Havealittletalk's Blog

April 17, 2010

How to Know When Death is Imminent, Signs Someone is Dying

I know that this post’s title is awkward, but these are the terms I used when searching for information when my father was dying.I knew nothing about the process he was undergoing, but then when would I have learned about dying? The basics of conception, gestation, and birth are covered in health courses, but not dying. So I started looking for answers. If the post’s title’s phrases have brought you here, I hope you’ll find these notes useful. 

Nearing the End of Life

There’s a lot of good material in Nearing the End of Life: A Guide for Relatives and Friends of the Dying by Sue Brayne and Dr. Peter Fenwick in association with the Clinical Neuroscience Division of the University of Southhampton (UK). Dr. Fenwick is a leading researcher in End-of-Life Experiences and their importance for the dying and the bereaved, a topic of interest to me.      

This document describes the physical signs of impending death, but is especially concerned with the psychological conditions of both the dying and the bereaved. Sections include advice on what people need as they reach the ends of their lives, how to talk with them, what to do if you can’t be with them, different types of end-of-life experiences that may — or may not — occur, and what to expect at the moment of death, noting that even though it’s impossible to predict how much longer a person has, the actual moment of death is just that– a moment–that is quickly over and easily missed.    

How Much Longer?

 One of the first things I found out was that when hospice nurses told me they could not tell me if my father would live for another day, or week, or month, they weren’t being evasive or attempting to make sure I wouldn’t blame them for telling me he had a week, when he had a day, or vice versa. Some doctors and nurses told me that their intuition about how long before a person died was generally, but not always, correct, but they couldn’t explain it.    

As I read more about this I was surprised to learn that  the “term ‘final hours’ refer to the last four to 48 hours of life“; this seems to me a fairly wide range of time.     

Care at the Time of Death

As best I can there’s no formula to use to predict how many hours or days remain. It’s not like you can plug respiration, pulse, blood pressure, and temperature into an equation and get a timeframe. But I finally found an article that presents data collected regarding several signs of impeding death, Elizabeth Ford Pitorak’s article “Care at the Time of Death,”  part of a series on palliative nursing published in the American Journal of Nursing. The goal of palliative care is providing relief to a terminally-ill person through symptom management and pain management. Pitorak reviews one study of a 100 terminal cancer patients that reported:   

the death rattle (if it developed) occurred first at a mean of 57 hours before death and was followed by respiration with mandibular movement at a mean of 7.6 hours before death. Cyanosis of extremities took place at a mean of 5.1 hours before death, and pulselessness on the radial artery occurred next at a mean of 2.6 hours before death. Consciousness was measured using a categorical scale of awake–drowsy–comatose. At one week before death, 56% of the patients were awake, 44% were drowsy, and none was comatose; in the final six hours of life, 8% were awake, 42% were drowsy, and 50% were comatose. . .   

I’ll try to save you searching glossaries: The death rattle is a gurgling sound. Mandibular movement refers to the jaw moving, like someone is eating air. Cyanosis of extremities means that arms and legs may become cool to the touch and bluish. The radial artery is where a pulse is felt on the wrist.    

(Note, however, that this study considered only people dying of cancer, not for other reasons. See “Predicting Active Dying” for more about this.)   

Unlike “Nearing the End of Life,” intended for people inexperienced with death and dying, the audience for “Care at the Time of Death” is nurses working with terminal patients. You can learn a lot from reading what isn’t necessarily intended for your eyes. Consider this passage:   

Written information, such as pamphlets, can be provided, but should be regarded as supplementary (see Final Days, page 47). Family members usually do not understand the implications of some of the observable changes, and these should be explained. For example, a primary nurse may tell the family that mottling is increasing, the patient is becoming less responsive, and his blood pressure is decreasing— and family members who have been sitting vigil continuously might decide to go home to rest, unaware that what they have just been told indicates that their loved one will probably die within the next few hours.

I appreciate Pitorak reminding her readers — experienced nurses — how easily people in one field forget that their language and knowledge are not universally understood.

More Resources

Growth House, Inc. : Here’s a source I came across very recently that I intend to look at soon. Its mission statement suggests it should be a good place to begin reading about this topic:

Our Mission: Growth House, Inc., provides education about life-threatening illness and end of life care. Our primary mission is to improve the quality of compassionate care for people who are dying through public education and global professional collaboration. Our search engine gives you access to the Internet’s most comprehensive collection of reviewed resources for end-of-life care.

Duke Institute on Care at the End of Life: This useful site has its own list of resources to follow up.

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308 Comments »

  1. My father had blue extremities, mottling over his whole body, a sudden drop in blood pressure to 70/50, frequent and violent vomiting, temp. over 100, oxygen sat. at <70, aspiration, didn't eat or get out of bed for 48 hours (final stage dementia), and he was fine 2 days later.
    How does one explain that?

    Comment by jep — May 20, 2010 @ 8:17 pm

  2. I wish I could. What did doctors and nurses say?
    By being fine I guess you mean his vitals returned to normal, since of course final stage dementia means never being fine again. But you know that all too well, I’m sure. Is he still alive?

    I had a condensed experience of this with my dad (see http://havealittletalk.wordpress.com/2009/12/28/i-didnt-know-dying-was-such-hard-work/). I thought he would die on the day [a Tues] that hour by hour his BP dropped, pulse dropped, etc. Then that night they returned to normal. The next day he was more alert than he had been for years. At dawn on Thursday, he died.

    I believe I read somewhere that when after a number of very low BP readings you get a normal one, it isn’t actually normal that you are seeing, but a high reading — high relative to what it had been — and that as the body shuts down things go out of whack — temps, pulses, etc. rise and fall because regulatory systems too are shutting down. So I’m curious to know if your father lived long after this episode.

    Comment by havealittletalk — May 21, 2010 @ 7:37 am

  3. Thank you for your well written piece. Many of us unfortunately have read horror stories about the funeral business. Regrettably there are companies selling cremation urns online which are not much more reputable. While they spend lavish amounts of money on web sites dripping with sympathy – many of these companies are nothing more than a site that drop ships product. Beware of sellers that do not have a physical address or the names of the principals of the company on the site – what are they hiding from? I had an issue with a company called Perfect Memorials ( Perfectmemorials.com ) and there was no one from the company that would talk to me. While I could call to order an urn – I could not speak to an owner or manager over the phone – they insisted that we only communicate via email. An evasive tactic if I ever saw one! Perfect Memorials is really a company that invested heavily in the web – but puts very little into the human contact part of the funeral/memorial industry. I would be careful of Perfectmemorials.com and others like them.

    Comment by Emes — May 28, 2010 @ 11:34 am

  4. I know I am a year later after your post…but I had to chime in to say thank you for the informative post! I too have been researching what to expect in my father in law’s death from dementia .. no one really talks about it – like it’s taboo – but otherwise, how does one prepare themselves for what seems to be an unending agonizing roller coaster? How much can they endure and prolong the inevitable. I do much better in dealing with the inevitable when I have some clues as to what to expect. Thank you.

    Comment by Anonymous — July 29, 2011 @ 9:28 pm

  5. Dear Anonymous,
    Thank you so much for writing. I have wondered if these posts were of any help to anyone because although they are the most often read on my blog, I receive few comments. But I haven’t expect them, anyway: if you are reading these posts, you have far more important things on your mind than commenting on a blog. Still, it is very nice indeed that after a year you have returned to offer your thanks. I appreciate it, I really do. Best wishes.

    Comment by havealittletalk — July 30, 2011 @ 10:09 am

  6. My father was taken to hospital last night, we were told by the doctor that his body is shutting down.
    He was in and out of consciousness. His breathing was very laboured and he stopped every now and then we all thought he wouldn’t make the night. However today he was wide awake and responded when we said his name. His body has jerky refelxes and his breathing is still all over the place, but all his obs have come back fine. I guess we will just have to wait and see how much longer we will have him with us. In the last 18 months he went from walking, eating living at home To being in a home to bedridden. I still can’t get over how quickly this has happened. Thanks for your research.

    Comment by Christie — August 14, 2011 @ 1:20 am

  7. this is really helpful – thank you.

    Comment by Anonymous — August 14, 2011 @ 1:49 am

  8. I’m sorry I’ve been slow to respond. This is a very intense experience for you, births and deaths, I believe, are. Best wishes.

    Comment by havealittletalk — August 20, 2011 @ 11:34 am

  9. It will be a month ago tomorrow that my wonderful sister passed away. She had a hideously aggressive form of womb cancer that normally affects older women, she was 45. My sister was taken (through the actions of an angel disguised as a paramedic) into our local hospice on Wednesday 20th July 2011 after a short but incredibly brave battle with this vile disease. She had only been diagnosed in February this year, and she had no real symptoms until around the end of May.
    She was admitted to our local hospital on the 1st July with breathing difficulties caused by the tumour pressing against her diaphragm. She was released the following day with a prescription for morphine to help her breathing. I personally feel that was the day the dying process began for real. I didn’t know it then, but with the knowledge from pages like this, I am convinced.
    She underwent another cycle of chemo 2 days after this which she slept through almost completely. She had reacted badly on 2 previous occasions to chemo and would normally be very anxious when it was administered. She was drowsy and unconcerned as the cannula was inserted and the drip started. I blamed the morphine.
    When she returned home she slept. And slept. And slept. Her appetite by this stage was almost non existent. She asked me to tell our Mum not to come in and see her as she was so tired. This hurt our Mum immensely as you can imagine, but she backed off and it was just over a week before my sister agreed to see her. They were so close normally, it was heartbreaking to witness my Mum’s distress.
    My sister was super organised. She was a perfectionist and used to get quite annoyed with me and my chaotic ways. But she stopped worrying about everything. The last 3 weeks of her life, she refused to speak to anyone but me and eventually our Mum. She ignored calls from friends and mail was left unopened.
    On her admission to the hospice we were told her cancer had spread at an alarming rate. Further treatment was not an option. We were told she was dying. On the Friday she was on constant oxygen, could hardly speak and refused food. I brought my daughter and my sister’s best friend into see her. Our parents were there too. My sister just gazed at us in turn. Like a child, wide eyed and it was like she was soaking up the memories. Filling her mind with our faces.
    The following morning she texted me. Told me she’d eaten some ice cream and that should ‘help Mum relax’ I was gobsmacked. I took my son to see her, she was off oxygen, chatty and talking about ‘getting organised’. I left her in the afternoon with our parents and returned in the evening. She was back on oxygen and showing signs of confusion again. The last thing she said to me when I left her was ‘I love you, take care’. Those were the last words I heard her say.
    I went in the next morning to find her really drowsy. She’d grunt if you spoke loudly to her but she was mainly unresponsive. Her swallow reflex had gone so her mouth was constantly open. I stayed the night at her bedside and by the next morning she was completely unresponsive.
    Our parents came in and in the afternoon I took our Dad home. He is 84 and was struggling so much with seeing his daughter like this. A dear friend came to see me later in the day at the hospice and my sisters best friend was also there. He came out of my sisters room and said he was going to get Mum some biscuits. He’d been gone a few minutes when Mum came out of the room and called me. My sister was taking very shallow breaths, quite far apart. She looked just like a little girl again. Mum and I held her hands and stroked her face as she took 3 last breaths before a grimace crossed her face and she was gone.
    The nurses had prepared us for those last moments and I am grateful they did although the horror of death is something I will never forget.
    Sorry for the essay, I just wanted to tell her story. <3 Sarah <3

    Comment by Claire — August 24, 2011 @ 8:30 am

  10. Thank you so much for writing. Death is a horror but we owe it to those we love to do as you did: to be there with them as they die. It is hard enough when it is a parent, but for you, to lose a sister, someone you should have had for many more years, and for your parents — no, I cannot imagine, don’t want to imagine, and want more than anything else never to know what it is like to lose a child. Peace be with you.

    Comment by havealittletalk — August 24, 2011 @ 10:03 am

  11. Thank you for giving me the opportunity to write. I feel I want to tell people about Sarah, talk about what happened. So much is still confusing and the pain so very raw. Pages with good, solid information like this are so incredibly valuable. I would never have thought my desire to understand, really understand what happened would be so strong. To read the facts and to read other people’s experiences is both comforting and reassuring. Thank you for your kind words and all the work it must take to maintain this blog.

    Comment by Claire — August 25, 2011 @ 3:28 am

  12. It does help to write, doesn’t it — but not just to write, but to know you are read, at least by one other person, but probably many, many more. And so we help each other and help ourselves. It has been a privilege to be able to offer even as little help as I have to people through the blog — definitely worth it to me. Thanks again for writing.

    Comment by havealittletalk — August 25, 2011 @ 10:42 am

  13. Thank you for writing this blog. My mother in law has been trending downward for the last few weeks. She has been hospitalized intermittently three times over the last 2 weeks. Her electrolytes were grossly imbalanced and the doctors couldn’t figure out why. So, they get her hydrated and send her home and then we watch as she becomes weaker and weaker and take her back to the hospital. She once again is very weak, her mentation is very poor and we are trying to figure out if she is dying or if her electrolytes are out of balance again. Your post helped to know what signs to look for.

    Comment by Christine Redding — September 7, 2011 @ 9:43 pm

  14. This IS a wonderful page….lost my mother 12 years ago, dad a year ago and Grandma is at Hospice right now….watching her die totally stinks but she is going through exactly what dad went through a year ago, I can see it, it’s all the things you describe here…so thank you for this!

    Comment by Anonymous — September 19, 2011 @ 10:29 pm

  15. My father passed away at the end of August and the fact the hospice nurse was so precise about when he would die was kind of haunting me so I did a search and ended up here.

    I took three months off work to care for my father at home in his final stages of cancer. He had it for 6 years but his decline felt rather sudden in those last few months.

    Over those last few days he stopped eatting, he was funnly conscious, but bed ridden. We had been here before but something felt different this time. It was like a light had gone out in his eyes, like he had given up the fight. “Was this it now?” “Was it another false alarm?” I called the hospice nurse who came to the house and spoke to my father. A week before he had been cheery and joking with her but this time he was quite drowsy. She took me into the kitchen and told me it would me two weeks max. Depsite always knowing this was the end game her words hit me like a bolt of lightening. Two weeks, how can she know, maybe she is wrong. She told me to think about getting things in order now, undertakers number, etc. Get the practical things ready while I was in a state I could do it. She allso ordered his pain relief in an intravenous form, incase he was unable to swallow at any point.

    Then a day or two later there seemed to then be more of a decline as he stopped drinking as much, I would try to encourage (Not force) but he didnt want to know. Oddly on the morning of his death he asked for something to eat, I offered to feed it to him but he declined and wanted to do it himself. I was out in the morning and hospice nurse came back to see him. He was sleeping a great deal. She told my sister we were now looking at two days max and felt he should have a pump to give him the drugs intravenously. Her collegue arrived with a doctor a few hours later. My dad was awake then, smiled at them as they explained what they were going to do and thanked them.

    The nurse took me to one side and explained that he had around 12 hours left. They included a couple of extra drugs in the pump – one to stop the death rattle (not what she called it) and the other to relieve anxiety and sedate him. I didnt want hm to be unconscious, I told her I want him to be able to talk. She said we had about 5 hours before he would drift out of consciousness.

    They asked us if we wanted a nurse to stay but it didnt seem necessary. Everything was under control. She also told us not to call an ambulance as by law they have to resusitate and we didnt want that ordeal.

    Me, my mum and sister sat with him that afternoon, his breathing became more shallow as the hours ticked my. He was very drowsy, I would call him and asked if he wanted a drink. He would nod or shake his head ( I used this moist sticks dipped in a drink as advised). Then as she indicated about five hours into it, I called him and he didnt respond. He would squeeze my mums hand, it felt in response to what we were saying but I guess you can’t be certain. Although the nurse did say he would probably be able to hear us.

    His legs started to get cold to the touch and this coldness started to travel up through the legs. The same with his hands/arm but not to the same degree. This started probably around 4 to 5 hours before he died. His breathing then became more shallow about 30 minutes before and at the very end he took a very short intake of breath, a few seconds passed and he took another. We waited but there were no more. My sister took his pulse and said he was gone.

    I can’t really describe the evening, it was rather surreal, still is. We played his music to him, laughed and cried. But if you have the capacity and time to care for someone at home I would really advise it. I was in a fortunate position to do that and totally appreciate it’s down to the indvidual and family. But I would not have done anything different. The hospice nurses were amazing.

    I still don’t know how they knew the end was nigh as he was conscious and talking. But they were so supportive and gave my father a beautiful ending. My descption won’t capture that but it truly was.

    Sorry it was so long.

    Comment by Colin — September 27, 2011 @ 7:04 pm

  16. Thank you so much for writing. To those who reach this page your story won’t seem long at all — so few people seem to have been able to be with the dying, or else they don’t want to revisit it in writing. It is so hidden — really, there must be a hundred accounts of the death of a pet for every one about the death of a person. Your hospice nurse must have been extraordinarily experienced and/or tuned into the rhythms of the end of life. Best wishes.

    Comment by havealittletalk — September 28, 2011 @ 11:43 pm

  17. I had the terrible privelage of watching my mom take her last breath two weeks ago. Your description is quite accurate. Mom was fairly responsive up until the last 2 days though looking back, the dying process started several weeks before. We probably knew it but chose to hang on to hope. We were totally unprepared for her illness, sepsis from infected heart valve, and had an 8 week roller coaster ride with the ups and downs of her prognosis. The most difficult part of her dying was watching my father watch his wife of 59 years die.

    Comment by Anonymous — October 8, 2011 @ 9:14 am

  18. A “terrible privilege” — yes, you are quite right. A perfect description. Peace to you and yours.

    Comment by havealittletalk — October 8, 2011 @ 9:44 am

  19. My mother passed away Sept 26 at 91 yrs old. My wife and I had been taking care of her for the better part of a year, since long ago, I promised her she would never see a nursing home.

    She had blood cancer and was getting periodic (monthly) transfusions since May 2011, but that was all that they could do to keep her alive. However, she became increasingly irritated about the trips to the hospital, and numerous needles to continue her regimen.

    A week before she passed, I enlisted Hospice support, though, worrying that I was giving her a “death sentence”, since transfusions would be terminated. Though, 3 days later, she went into “final stages” of dying and expired well before her next scheduled transfusion.

    I now believe the Hospice support was absolutely the best choice I ever made… The nurses were wonderful, and the only regret I have is not having resourced this site earlier, since it explained many of the changes in my mother that were initially puzzling / disturbing. Keep up the excellent work.

    Comment by Albert G. — October 11, 2011 @ 2:48 pm

  20. I have found all of the entries to be very insightful. My father-in-law is very ill and has stopped eating. He refuses all food except milk shakes. He grows more and more confused. He was hospitalized twice in Sept. and is now in a nursing home. I feel the end is near and found your experiences to be very helpful.

    Comment by Kris — October 12, 2011 @ 9:51 pm

  21. Hi all – 2 days ago I sat with my father as he took his last breath. He had Alzeimers Disease for the past 10 years – diagnosed 8 years ago. Going through the loss of his mental capacity was hard but transition into play with him was easy. I just regarded him as reverting back to childhood and adjusted the way we communicated into art, ball games, reading, music etc.. What a huge shock when – 3 weeks ago – he had a fall and his decline into death commenced. Before then there were really no physical issues at all. We had only placed my dad into a nursing home 1 year before. After this fall – he had 4 visits to the Hospital Emergency Dept for stiches, urinary problems and a cathetar was inserted, responsiveness etc. From then on it was a fast downward decline. He became inmobile and was continually lying in bed, his eating and drinking decreased to the point that one week ago he had major problems swallowing and then 4 days before his death could not really swallow at all. We met with the Government Pallative Care Team the day before his death – when they told us he did not have long to live. What a shock and confrontation to the system – he had been fine a few weeks before and to be told this was devastating. I made the decision not to leave his bedside from that minute and I did not. I started researching the final stages of life which helped me immensely in seeing the signs as they appeared. At first he was responsive and I played music, had aromotherapy, read and massaged him. The next stage he seemed to slip into a sleep but his eyes were open and he was responding to our touch and voice but his breathing was difficult – he was taking rather deep breaths but had long breaks in between which was scary. He was perspiring and hot. He had a look of fear in his eyes. Through that night his breathing patterns changed as they commenced giving him morphine. They became shallower and more rapid and consistent. All you can do is sit there and see these changes. About 2 hours before he died I went to massage him and his feet were freezing and were deep mottled blue. An hour before his death his fingernails became blue and his face began showing a blue tinge. As we held his hand he took his final breath – not the huge experience we had anticipated – but rather – he just stopped breathing. After approx 30 seconds there were 2 more breaths and that was it. I checked his pulse and lay my head on his chest. He had passed away. I do feel it a priviledge to support him through this stage although it is very confronting – but it wasnt about me – it was about him !

    Comment by Tracy — October 15, 2011 @ 2:18 pm

  22. Wonderful posts – thank you everyone. I’m reading this having just left the bedside of my grandmother who is dying in hospital as I write. Really helpful.

    Comment by Anonymous — November 6, 2011 @ 3:56 pm

  23. Watched my grandmother die of cancer at home under Hospice care. Now it’s happening to my father. I can’t do this again. All who post here sound so calm. How do you go on when you lose your daddy/best friend? I have a daughter who needs me, but I cannot imagine a future without my dad.

    Comment by Anonymous — November 10, 2011 @ 7:28 pm

  24. I am sorry to hear the pain you are going through with your dad. I posted previously about my experience.

    I think it’s different for everyone but I recall feeling the same way you do. I couldn’t comprehend it or imagine it. I thought when it happened the pain would be so immense I wouldn’t know how to carry on. But for me something else kicked in – a numbness, a need to be there for my dad. Not acceptance but an opportunity to have an ending of sorts. It’s early days for me now he’s gone and most of the time it doesn’t feel real. It comes in waves of pain, at times it feels like I’m filling up with an inability to cope but it subsides and a calmness comes in. I recognize I’m on a horrible journey and there is no right or wrong way to feel.

    I have friends who call up and say “I’m having a get together , you need to laugh” and I politely decline. I don’t feel like laughing and at the moment I will be selfish with what I do and I feel thats fine. It’s my journey.

    One thing someone said to me when I knew my dad was dying was to not have any regrets. I feel I used the time to make sure that was the case. Grief is a lonely place to be, but talking about how you feel and sharing it is really important.

    Comment by Colin — November 10, 2011 @ 7:54 pm

  25. Anonymous, I’m sure you know you answered your own question — you will carry on because you have a daughter who needs you. And may I suggest that being there for her is what your father would want for you to do — even what he would expect you to do?

    Colin, I think that cultures that make a big deal out of the first year have it right. It takes a year to begin to know that it does get better. It may take getting through the first holiday season, the first birthday — yours and his — and so on before you really start to believe that it will get better. And you should be respectfully allowed this time — at least you can allow yourself this time — to grieve.

    Comment by havealittletalk — November 11, 2011 @ 6:22 pm

  26. To Colin and havealittletalk – Thank you both for your responses. My father will be leaving me any time now. I know I must go on because of my daughter, but I can’t even fathom the concept of my dad not being around. I think I see him at the store, I almost pick up the phone to call him with a question or some news – and then I remember he’s lying unconscious in a hospital bed in my parents living room just 5 minutes from my own house. My body hurts from head to toe so badly it’s beyond words. I can’t imagine how bad it’s going to get when he’s truly gone. I wish the best to the two of you and hope that I can somehow get the strength that you obviously have to carry on and make my daddy proud. Right now all I see is black, and all I feel is pain.

    Comment by Anonymous — November 14, 2011 @ 11:30 pm

  27. Anon — You will find the strength because you must. And one day — maybe years from now — you will be able to assure someone else who is struggling that she too will survive. You will make your daddy proud. How do I know? Because you were raised by a man who taught you about love and respect and doing the right thing. Death cannot take those gifts from you.

    Comment by havealittletalk — November 15, 2011 @ 12:18 am

  28. It has given me some comfort to know that my feelings are ‘normal’ and to read everyones stories, it all hits home with me. My brave Dad passed away at 2pm on 20.10.11, my mum sisters aunties uncles and partners were all there with him. up until the moment he took his last breath i had never accepted that my dad was going to die. He had been admitted to hospital with pneomonia 5/6 weeks earlier and recently it dawned on us that Dad had known the outcome after a few days of being in hospital and he protected us from the worst until 1 week before he died. We took his precious grand daughters to see him on what turned out to be the last day that he was completley our dad, the deterioration after that was so fast! The last words my dad spoke to me were “love you too” as i left the night before. My mum spent the night at the hospital with him – this gave him comfort as they were rarely apart. I have so many precious memories and happy times with my dad in my head, but i will never stop missing him, the numbness is wearing off slowly and the pain i feel is over whelming but my little girl will get me through, i have to get through for my heartbroken mum, i am so proud of both my parents. Life has to end, but love doesn’t

    Comment by Kels — November 21, 2011 @ 4:00 pm

  29. “Life has to end, but love doesn’t.” How very true.

    Comment by Anonymous — November 21, 2011 @ 5:20 pm

  30. My mum has had alzheimers for over ten years and we have been through a lot. She doesn’t know me or who she is and cannot talk. But all day she smiles at anyone who comes into her room. The last four months have been hideous. She has had a number of small and one large stroke. She bounced back. We have other immediate family members diagnosed with cancer at the same time. Lots of body blows. Mum had a heart attack or three five days ago. We all went and kept vigil and were told she is shutting down. Her breath was laboured. She sweated and hallucinated. She was agitated and fearful. And she slept a lot. Morphine was administered. We kept vigil for 48 hours. She went rigid and could not be moved. Then hour by hour she relaxed, became alert and recovered. We have all said our goodbyes. She is now happy, alert, babbling away and almost giggly. She is drinking fortisip and is better than she has been in months. We have been told this may not last. But knowing her, it may. We made the decision not to resusicate years ago but it’s tough and we don’t want her back for the life she is living. I so much want to be there when she goes but I feel that isn’t going to happen. Do others have experience of loved ones coming back from the brink? It’s a rollercoaster. I don’t want to keep her with alzheimers but dont want to let her go either

    Comment by Jaybee — November 22, 2011 @ 2:22 am

  31. To Jaybee – yes totally. My mum was diagnosed with Lewy Body Dementia (Alzheimers & Parkinsons
    together with mental hallucinations) in April 2010. This year she was was admitted to a psychiatric
    ward for 6 weeks , then residential, and now nursing home. She broke her hip in residential home,
    went into hospital and they moved her to a “rehab” unit where the staff managed to break her hip
    again due to incorrect use of the hoist. She has not got out of bed since June this year. She weighs
    less than 4 stone and has recurrent c diff bowel infection. She has only a few words of intelligible
    vocabulary left and her arms and legs are as stiff as iron due to the Parkinsons and cannot be moved.. I have been told
    three times in the last 3 months that my mum is close to death but she always seems to rally at the
    last minute. She has started eating huge amounts in the last few days, even though she was previously existing on 3 teaspoons of pureed food a day. She cannot make eye contact with me any longer, doesn’t know me and doesn’t understand why I am there plus her hallucinations are extremely frightening for her. I feel exactly the same as you – I don’t want her to live, I don’t want her to die. Other family and friends have stopped visiting because they cannot cope . I can’t cope either but someone has to. I am angry, depressed, exhausted,bitter and truly cannot believe that someone is allowed to continue to live in this horrific state. The nursing staff are v good but keep telling me it is her will to live that is keeping her going. I find that hard to believe as my mum doen’t even appear to know that she is ill. On a good day, I accept that this is just the way it is and there is nothing anyone can do but those days seem to be to be few and far between recently. Anyway, sorry to go on – my thoughts are with you and your family. It sounds like like you’ve had a rough time and my heart goes out to you

    Comment by nicola — November 22, 2011 @ 5:36 am

  32. I was watching a ‘Cold Blood’ episode on the Discovery channelwhen a paramedic responding to a shooting mentioned the victim had a ‘death rattle’ & I didn’t know what that meant so I googled the phrase & found you. I was present at my ex husbands death where he was making this strange, gurgling noise. Thanks to this site I now know what it was. There was also a strangeflowery, medicinal smell that came over his room every so often but I was too embarrassed to ask the nurse what it was. I have a pretty good idea but not so sure I really want to know. Thanks for creating this site & Will share with friends & family.

    Comment by Sheila — November 23, 2011 @ 12:53 am

  33. With tears in my eyes from reading this thread… it is something I’m glad to have stumbled across but maybe I’m happy I didn’t find it before my Dad’s death a few weeks ago.

    Some of what has been written here I watched. I guess it’s what the nurses kept looking for so now I understand better.

    I’ll leave this one discovery for others to reap the benefits of… when it came time that my Dad could not talk, could not eat, could not squeeze his hand closed on mine…I would say, “Gimme a kiss Dad”. And as I put my cheek down to his lips he would form a slight pucker…so I knew he understood and was trying to deliver. I would reciprocate.

    And so it seems… that the mind, and the love & spirit within, holds on to stay around as long as it can.

    No matter how much we are “at peace” with the passing of a loved one (especially after a prolonged sickness) there is something about part where you keep thinking: “but just the other day they were a living, breathing, thinking, loving being” and then poof…they aren’t. No matter how sick they were… it’s like you want to “reel that back” and keep it alive because it just seems so, hummm, so ….. I donno.

    Thank you for the little talk.

    Comment by Life is Short — December 2, 2011 @ 5:41 pm

  34. I will say as a nurse and a family member it is still hard for me to watch my uncle die. He is in the active phase of dying. He is not eating,drinking and staring off into space

    Comment by Veronica — December 4, 2011 @ 12:17 am

  35. This is very hard for my grandmother my uncles mother. She is 102 and watching her baby die she is beside herself. She wants him to eat and I told her that he wont be eating anymore and may just take sips of water. I told her to just tell him you love him and just rub his hands and continue to talk to him. He may not prepond but he hears her. I gave her a book from my job St Vincent Hospice and it is called “Gone from my sight” I think that book is a must read for everyone experiencing the impending death of a loved one.

    Comment by Veronica — December 4, 2011 @ 12:33 am

  36. Veronica, I think it is good for others to know that even for someone who has seen dying, it isn’t ever easy. I have tremendous respect for you nurses.

    I feel for your grandmother. There are only two things I want in life. One is to live long enough so that both my children are launched. The other is not to outlive either.

    Jaybee, Nicola, Kels, Sheila, Life is Short, and anyone I’ve missed: I am grateful for your comments; sometimes, especially recently (see current posts), I haven’t responded. I never imagined these posts would get so many responses.

    Last month I made scrapbooks for my kids — so many pictures, too few words. I regret not writing more about them as they grew up. My point is that there is something special about putting your memories onto paper, the screen, whatever. I thought I’d remember everything — now there are pictures of my 16 year old I can’t date. I don’t know if they’ve read the posts about their grandfather’s death, but they will find them, eventually, maybe when they need to.

    Comment by havealittletalk — December 4, 2011 @ 12:39 pm

  37. Scrapbookin is a good ideal….!

    Comment by Anonymous — December 5, 2011 @ 1:09 pm

  38. Thanks to everyone for their posts. My 100 y.o. grandma is actively dying. I put her on hospice over 6 months ago and she has done really well. 2 weeks ago we threw a 100th birthday party for her with about 15 family members at the nursing home. She was up in her wheel-chair, dressed and did great! I am so thankful she made that milestone and we were able to throw one last hurrah for her. Hospice increased from 2x/week to daily 2 days ago. She hasn’t eaten in a few days, stares into space (eyes are clouded over and almost shut). Yesterday I visited her and she “talked” almost the entire time I was there (about 30 min). I couldn’t understand most of what she said, very mumbly, and then she’d repeat it over and over. I just held her hand and told her I loved her. Today I called to check in and it sounds about the same but she’s less responsive. They say her vitals are still really good which they’re surprised about. Hospice told me on Friday they didn’t think she’d go this weekend (of course no guarantee), but I just don’t know. She’s got to be close. I plan to go again tomorrow and sit with her. I’ve been torn about going today and don’t want to regret not going, but it’s so hard to watch. I have to be alright with knowing if she goes tonight, at least I saw her yesterday and told her I loved her. If she doesn’t, I’ll do it again tomorrow. I just want her to be at peace and comfortable.

    Comment by Kristin — December 10, 2011 @ 5:02 pm

  39. I forgot to mention…my grandma will have her 2 sons waiting for her (I hope). My father passed away 9 years ago after alcoholism related suicide, and my uncle passed away only 6 months later from cancer. I believe very much in life after death due to some experiences I had right after my dad died. I hope they will be together again, and I would love to get some sort of sign after she’s gone. It’s been years since I had any signs of my dad and while they were really scary at the moment, they also brought me some peace and comfort.

    Comment by Kristin — December 10, 2011 @ 5:05 pm

  40. Thank you for the time you have taken with this blog. I have just experienced my mothers death and did not under stand what was happening and it did it alone. I’m too distressed and exhausted to blog further now, but I will soon. Thanks for all your information which had helped me heaps

    Comment by leigh — January 1, 2012 @ 6:17 pm

  41. Peace be with you, and thank you for letting me know.

    Comment by havealittletalk — January 2, 2012 @ 4:31 pm

  42. My mum was diagnosed with lung cancer and within 10 weeks she was dead 26 November 2011. I triied to go round every day since the diagnosis but with working shifts and 3 weeks I have to admit I skipped a couple of days (something I feel so guilty about)
    Anyway the last 2 months before mums death she would see people/bugs/things,we put it down to the fact her sight had gone because of the cancer. I would go round and she would tell me she had The Salvation Army/Scouts outside the house singing! Talk to me normally then lok away and smile at a little boy that had been in and out of the house all day!!!!
    She went to hospital on the Friday night (don’t ask about the NHS service) thinking she may have a water infection. 5am on Saturday we had the call,when I saw her she was opened eyed but non responsive,I stroked her hair and hand as my eldest son,my dad,Auntie were there. The Doctor told us she had 12-36 hours to live.
    My Dad wanted to go home to pick something up but he would be straight back (1 hour tops),my Aunt went with him and I encouraged them. 10 mis after them leaving Mum died!!!!! I’m having a hard time with that but also if I knew before she was dying she would never have gone into hospital and the trials that contained(different story)

    Sorry everyone but feel your pain so much

    Comment by Sue — January 3, 2012 @ 7:56 pm

  43. Thank you so much for this site. My Grandmother was diagnosed with Pancreatic Cancer 3 weeks ago. She had never been sick and always taken care of herself. So this came as a surprise to us all. As her end is nearing. I have so many emotions going on sad that she is going to be gone, but at peacce that she will be in no more pain and be back with my Grandfather again. Hospice has been great with her they are so caring and I come from a very small town so our nurse went to church with us so that was better for my Grandmother someone that we all know.
    My thoughts and prayers are with everyone of you that have posted.
    “Life has to end, but love doesn’t” What a great saying!!

    Comment by Melissa — January 8, 2012 @ 8:36 am

  44. I really don’t have any particular fear of death, but the effects of the death of a loved one can have an influence on the survivors for a long period of time. My father died a hideous cancer death in the spring of 1990. I was a bit guilt-ridden because on the day he died I saw him for only a few minutes at the hospital prior to leaving to return to my home that was several hours away in a different city. I had taken some time off and felt I had to go back to work.

    Of course, he died later that very day.

    For many years afterwards I often dreamed about him… he was in average health in these dreams, but I still felt like there was always something odd or wrong about them, even as I was experiencing them. Finally, after years of these confusing dreams, I had one that was the crescendo of the experience. I was talking to my dad in the basement of a home that we lived in when I was a teenager. The basement was 1/2 finished with one half carpeted, painted and that served as the family room. The other side was always an ongoing project with my dad and he never did really finish it.

    In this dream he was showing me duct work that he was working on in the unfinished portion of the basement when I stopped him from talking and told him, “You’re not supposed to be here.”

    With that an expression of great sadness came over his face and he simply said, “Okay, come here.”

    I followed him out of the room into the finished part of the basement and when I got to the other side of the door way, he was gone.

    I haven’t dreamed about him since.

    Comment by Clark — January 16, 2012 @ 1:47 am

  45. [...] “One of the first things I found out was that when hospice nurses told me they could not tell me if my father would live for another day, or week, or month, they weren’t being evasive or attempting to make sure I wouldn’t blame them for telling me he had a week, when he had a day, or vice versa. Some doctors and nurses told me that their intuition about how long before a person died was generally, but not always, correct, but they couldn’t explain it.”   (more) [...]

    Pingback by Ever Present Question: How Much Longer? « HoardingWoes & You — January 16, 2012 @ 11:56 am

  46. @Clark that is interesting about the dreams you experienced. I have dreams about my dad on and off. Some are lovely and some where he is knocking on the door and can’t get in which feel quite chilling.

    It’s coming up to five months now since my dad died and I have really dark days. It’s weird actually because I have not thrown out his medication tools, like the syringe for oral application of morphine. Part of me feels like it’s holding onto the pain, perhaps to make sense of it

    Comment by Colin — January 18, 2012 @ 4:23 am

  47. My mother is in the final stage of Alzheimer’s. She was diagnosed only a short 5 years ago. At first it was simple memory problems and over the past 5 years her decline was very gradual. Last January she began to decline much quicker. The last 2 months have stricken her with no memory at all, stiff joints, trouble swallowing and overall severe dementia. I saw her 2 weeks ago and she was able to eat solid food however, a few days ago, this was impossible. She cannot open her eyes (I gather this is due to weakness), she mumbles constantly but when she is asleep her mouth is open constantly. Her hands stay cold all the time and remain a purple/blue all the time. As per her advance directive, we have stopped all life sustaining medications and they are only giving her medicines to make her comfortable. I think her time is growing near very quickly. Your posts have been very helpful, although I have already experienced this before with my father-in-law about 25 years ago. It was not easy then and is not easy now. I only hope mom does not linger in this state as she has been through more than her share of pain and loneliness.

    Comment by Renee Daily Hill — January 25, 2012 @ 5:12 pm

  48. Renee, I don’t think it will be long now. If she is taking no fluids, just having her mouth swabbed, ask to be told when her diapers show she has stopped urinating. That will mean her kidneys have shut or are shutting down. Then it will be maybe a day (although my father’s hospice nurse said it could be as long as three [it was about 18 hours for him]). Peace to you.

    Sue, the first lady I worked with as a volunteer with a hospice was 100 years old and had been diagnosed several weeks earlier with lung cancer. She was on oxygen and could hardly see, but was still able to live alone. When she developed bronchitis, her daughter took her to the hospital, although she didn’t want to leave her apartment. She died before the paperwork to admit her was completed. I think she was ready to go. Don’t feel guilty that you encouraged your dad and aunt to leave for an hour. You acted in good faith based on what you were told. Also, I’ve read many stories of someone dying right after a loved one who has been at the bedside for days leaves. It may be that while your mom didn’t want to die alone, she thought it would be too hard on your dad and her sister to be there, but that you needed to/would really have wanted to/were strong enough to be there.

    Comment by havealittletalk — January 25, 2012 @ 10:23 pm

  49. Thank you for this site. I’ve been on the computer for hours trying to find information regarding my 91 year old mother-in-law’s “cool to the touch hands and feet”. She is in late stage Alzheimer’s, non-communicative, and bedridden. I’m leaving the site with quite a bit of information and especially paid attention to those who wrote about loved ones with dementia.

    Comment by janet — January 28, 2012 @ 11:34 pm

  50. Hello, my father-in-law has been diagnosed with stage IV pancreatic cancer. He has been in the hospital now for almost 10 days. He had a stent placed for his jaundice and the day after seemed back to his active self (got up to relieve himself in the bathroom and shave) the following day his kidney stopped working (he has one kidney as he is a 4 time cancer survivor) and he was slurry and found it hard to stay awake and his eyes were glassy…we were preparing for the worst. The next day he picked up again and his kidney started working again. He has not eaten for over two weeks and is given fluids only through IV. It is very hard to understand what is happening as one moment he seems at his end and the next day he is still hanging in there. Does this happen often? Anyway thank you for your explanations and for publishing your very helpful article.
    Aurelia

    Comment by Aurelia — January 30, 2012 @ 12:56 pm

  51. I have been reading these posts..I feel blessed to have stumbled upon it..My friends nana is dying..he is asking me “what to expect”? I could only tell him MY experience..My husband died in 1996 at the age of 44 from a rare cancer..It came like a theif in the night and stole him from myself and my young girls..in just 10 months..I wish I had a place to go back then for peace..this site I feel, gives that..Whomever said “the terrible privledge” is so right..It was MY honor to take care of and be able to be there (my girls ages 7 and 10 were laying right next to him)..I was able to share that spiritual moment in time at the very end..he bacame very lucid..told our girls to be good and mind mommy..that he will be with them always and will love them from heaven and back..he then thanked me for being his best friend, lover and wife..blew me a kiss (I was at foot of bed) and died..It was Fathers day! The thing is..of all my memories in my mind for the 16 years we were together..it was that LAST one..that last image of him dying that etched in my mind..

    Comment by Kathleen O. Durden — February 2, 2012 @ 11:51 pm

  52. Aurelia — your father-in-law may now be at peace; I hope so. If not, one thing you might want to discuss with your family is how long to continue IV fluids. A large man can live quite some time without food, not so without fluids. But this is very hard for some people to do. If IV fluids are withdrawn, it is when there is really no hope of things getting better. In my dad’s case it was when he could no longer remember to swallow. There are swabs that are used on the lips and tongue to keep them moist and keep the sensation of thirst away. You will know best what he would want.

    Kathleen — your husband gave you and your daughters such a gift of love — maybe it is the knowledge of that love which brings that image to mind again and again. Thank you for writing.

    Comment by havealittletalk — February 3, 2012 @ 12:48 pm

  53. I personally have no answer to any of life’s mysteries and found myself on this website still searching for answers five months after the passing of my beautiful grandmother. Your honesty in your writing brings me back to those few months, weeks, days, hours, minutes, and seconds involving my loved one’s departure from her physical body. She slept more and more as she approached her exit. The night she was called back to be with the Lord, I prayed and prayed for it not to be lengthy. Her body had been through too much, it was painful for me to see my Grama struggling in her physical body. My compassion and love for her enabled me to pray for her to return to God, allowing her to finally be at rest.

    The hardest, most painful moments were her being thirsty, but unable to swallow, and my worries of her choking on water. We gently dropped individual droplets of water into her mouth with a droplet, and proceeded to moisten her lips with a moist towel. It was difficult to be helpless. My grama struggled to breathe, slipped into a coma, and peacefully drifted out of this world.

    I couldn’t comprehend initially if she was still in a coma or if she had passed. It wasn’t completely obvious and I was confused, even though I was expecting this. Even after hospice, which was excellent, later declared her gone, I wanted to be absolutely sure.

    My Grama was and still continues to be a source of inspiration for me. She best reflected God’s illuminating love through the love in her eyes, actions, words, and example. I miss her very much, but am certain that she knew her body could not endure anymore. She took some type of control over her circumstances to go.

    As you journey through this very difficult period in your life, I send you compassionate thoughts. Thank you for sharing. Your thoughts and reflections are comforting to those who seek information and answers.

    Comment by Grama's granddaughter — February 6, 2012 @ 1:41 am

  54. Thank you for this site and to all who have posted here and shared their experiences with us. I have been bedside with my 74 year old Mother who is dying from Ovarian Cancer. Her battle started five years ago and I can honestly say she started dying from the first chemotherapy infusion. We have been on a five year journey to this point. I have travelled to her home in Arizona from my home in Oregon every few months since her diagnosis. I arrived last Friday (it’s Sunday night) and she was in a hospital bed at her home being cared for by my Father. His compassion and determination to allow her to die at home fills my heart with such love and gratitude for him. My Mom’s breathing is erratic with 30 to 40 second intervals at times followed by recovery breaths and a gurgling rattle (not always but occasionally). There is a hread of her running through a veil that what was once a vibrant, head-strong woman. She opened her eyes this morning and said “I see your face” and I said “I see your face”. That was a very rare moment of clarity.. She is moving her mouth open and closed (mandibular movements/extensions) trying to get enough air. There is no certainty for a timeline with death. She is ready, we are ready. Now we wait until she takes those last breaths. I think each of us is aware that the last months, days, hours or minutes are about helping them get to the end.

    Wishing you Godspeed. Keep a strong bak and a soft, compassionate front.

    Comment by Mickey — February 13, 2012 @ 12:38 am

  55. I found your blog while I was trying to get information on hospice care. My niece just turned 9 and she has been in hospice care for two weeks now. She has cancer of the brain stem. In the last two weeks, she has gone from walking around and still going to school to being bedridden, on oxygen and has a feeding tube. I feel so sad for her family. It’s been a year and a half of pain and the worst hasn’t even come yet.

    Comment by Susan — February 13, 2012 @ 5:29 pm

  56. Thank you Grama’s granddaughter and Mickey for telling your stories.
    Susan — I am so sorry for your niece, for you, for her parents. I am so very sorry.

    Comment by havealittletalk — February 13, 2012 @ 8:19 pm

  57. Thankyou very much for posting this and helping me to understand the process of dying.
    My great-grandmother is dying, she has had parkinsons disease for a number of years. 7 days ago she slipped into a comatose state, we were told she would last a couple days Max. she is still with us at the moment but last night her pulse was stopping and starting, her hands & feet are very cold and purpleish & her breathing became quite heavy, we thought the time had come but she has surprised us all. She has had no fluids or food in 7 days & I’m astounded that she has lasted this long. Nurses fitted a syringe driver today so she could have meds pumped in & the Dr said this morning that the end was very close! Its such a difficult time for all my family but we are helping each other stay strong & be there for my nana.

    Thank you

    Jade

    Comment by Jade — February 16, 2012 @ 9:53 am

  58. hi there,
    my mom are now in hospice care and has cancer all over. at this very moment i am sitting next to her bed. She hardly eats or drinks, her urine is full of blood, calcium and proteien. she sleeps most of the time and gets confused a bit when she speaks. How long is she still going to suffer like this??

    Comment by mariaan — February 16, 2012 @ 6:15 pm

  59. Hello, it’s a little late to be writing, but I just wanted to share some thoughts. I personally truly believe that our loved ones not only rest from the pain while they sleep, but are protected while they sleep as they venture closer to their spiritual destination. Each time they drift off to sleep, they come closer, enabling them to acknowledge and accept their fate. I draw my belief due to personally feeling enveloped in God’s comfort, peace, understanding, and love right after having returned her back to our creator. This humbling care carried me during the next few weeks as I struggled with the loss and acceptance of Grama’s passing. It enabled me to both seek and receive comfort from others willing to share their experiences and prayers and walk with me during my difficult moments. “The veil” around me gently lifted a few weeks after her passing when I was able to move forward without it draped around me. My faith carried me through the darkest hours and helped me rejoice in welcoming her home although she would be apart from us for an extended time. Having been taken care of so patiently, lovingly, and kindly with God’s consent when I needed it the most only draws me to believe that our loved ones who most desire and require God’s ever radiant love receive it at their most vulnerable time. Prayer is ever important. Please pray for God to assist you to pray for what is needed. I recall having to change my prayers in a different direction only when the Holy Spirit saw fit that I was ready to accept. I only share my personal experience and hope to offer someone else some type of comfort.

    Comment by Grama's granddaughter — February 24, 2012 @ 2:33 am

  60. Jade and mariaan, I hope the suffering of your great-grandmother and your mother have ended. Thank you Grama’s granddaughter for giving hope to those who mourn.

    Comment by havealittletalk — February 26, 2012 @ 12:51 pm

  61. just found this website..thank you for everyone sharing your stories. My dad is late stage dementia now and I talk to my mother (who is with him) about very 2 hrs. I amso sad and feel helpless..I am 7hrs (by flight) away..it’s so hard.

    Comment by Kristin — February 26, 2012 @ 8:58 pm

  62. WOW, thankyou, i cant comment at the moment, too hard to write (can’t see for crying) but i have found a great deal of comfort in these posts. xxxxx

    Comment by Louise — February 28, 2012 @ 8:58 am

  63. All of your blogs are of great comfort to me. My father is 84yrs a beautiful man and I love him like I have loved no other. He has vascular dementia and is now I feel preparing to pass. He eats and drinks sparingly, does not urinate as much, spends a lot more time in his room at the nursing home, tends to hold back on swallowing, his hands feel cold, he does have a gurgling sound when he dozes off on his bed. Although he cannot communicate more than a few words, he try’s to talk but it is a mumble and jumble of words. His physical health is good but his weight is down to around 70Kg and dropping so at 6ft 2 inch tall he is very thin yet still managing to walk around and get in and out of chairs without assistance. I get so emotional when I visit now as I know he is soon to die. It’s so hard to see him in this state but for the first time I am dealing with the end process of life a natural process that we will all go through. It has helped me reading about what to expect and hearing from others that it is very emotionally tough. So thank you for sharing your personal experiences.

    Comment by Sarah — February 28, 2012 @ 5:13 pm

  64. Thank you so much for explaining about the final stages before death. My father had a second stroke 9 months ago. He is in a nursing home, is incontinent, can no longer move his extremities and is very hard to understand. He seems to enjoy the ipod we have in his room. We recorded all his favorite songs and is glad to have some fancy ice cream we bring him. He is refusing food and medications now, saying it is his right and no longer remembers his two careers: flying planes and building houses. I appreciate you so much for telling about what to expect. Each day is so
    miserable for him now- I wish I knew what more I can do for him. Thank you so much. Vicki

    Comment by Vicki St. John — March 5, 2012 @ 1:30 am

  65. I am a 33 year old mother of 4 beautifully children 3 i gave birth to and one i gained when i got with my fiance. his mother lost custody of him and then moved away so i have helped rasing him for the past years while at the same time battling cancer. I have a very rare cancer and have had many surgiers and chemo therapy and one go of radiation. the cancer spread to my lungs imediatly and while it has stayed undercontrol every where else they can’t get in under control in my lungs. So i am fearing it has spread to my abdomen and possible leg. I am fearful that the doctors aren’t going to do much more at this point because i keep deteroating. I am in general good health but feel constaintly overwhelmed and tired. My beautiful children have had no contact with their real father at all in almost 2 years now and before that had very minimal contact with him since he left us in 2007 I can’t die and leave my children with this man. They have been through so much already from their dad leaving them for another women to me getting sick to lossing a cousin who was like a uncle to them and a little brother to my self he died in a horrible car accident at just 19 years old. I am scared to death of dying and wish i was not givin a death sentece my grandmother has tried to tell me how lucky i am to know how i will die and to know that it is happing but i would rather have gone suddenly like my cousin did. I am more fearfuly of leaving my children and loved ones rather than dying it’s self i also do not like being in pain and i don’t want to suffer i also don’t want to have a breathing tube or tube shoved done my nose as i already had that done before it was only for 8 hours but it was horrible. I go for scans on friday to see if the chemo is working and if my lungs are finally undercontrol which we are hoping means the tumorms are staying the same and no new growths or the ones already there are not getting bigger as they have been doing in previous months. I know i am rambling but reading this site has made me more aware of the signs to look for in my own situation. I just want to fight as long as i can i only want enough time to raise my children. I am praying for a miracle at this point cause that is about the only chance i have but to have a miracle you have to have faith in it and that is my problem im running out of faith and i need to find away to have faith so i can get peace wheather i get my miracle or not god will do what he has planned for me. And if he is ready to call me home then i have to leave i just don’t see how he could call me home when my children so desprealty need me. they are already suffering with so many mental problems due to everything they have had to endure in such a short time of their lives i don’t want to bring them any more hurt they have been through more in their young lives then most of us have experienced our whole life. any advice on how to help them and my family adjust to the fact that i am most likely going to die would be greatly aprricated. And to everyone else’s stories i am sorry for your looses and thank you for sharing your stories as sad as they where.

    Comment by Anonymous — March 6, 2012 @ 3:37 am

  66. I’m really sorry to hear what you are going through and have been through, you are dealing with some much.

    What support are you and your children getting emotionally in all this?

    Comment by Colin — March 6, 2012 @ 5:56 am

  67. I am really glad to find this blog — desperately trying to figure out where we are. It is really difficult to find the information you’ve all posted here, so thank you for sharing. Right now, home with my husband, who is in hospice care in the final stages of metastatic bladder cancer. He was doing fine until early Jan, but the trajectory has been downhill since then. After 2 rounds of chemo last year, he started radiation treatments in Feb for a new fast-growing tumor that was pressing on his esophagus. After 2 treatments his esophagus was completely blocked and he couldn’t swallow anything, so he needed to have a stent inserted. Struggling now with hiccups, nausea, almost complete loss of appetite, pain, weakness and confusion and hallucinations. Guess I am wondering if anyone ever comes back from the brink. I keep seeing signs of hope. Or am I refusing to face reality?

    Comment by Karen — March 9, 2012 @ 7:40 am

  68. My husband and I have been taking care of my (our) mother since 2004. We moved her from Michigan to Florida. There are many programs her to assist caregivers to keep their loved ones at home. I could see the demise coming but as an only child I didn’t want to face it. She was going to a wonderful day care named Aging Grace, in Sunrise FL after she was discharged from another day care after she had been there for 3-4 years–because she was inappropirate. Toni, the owner of AG is so wonderful and caring. Through this program the daycare is paid for and the aide to come and get her ready for daycare. It had gotten progressively difficult to find an aide who was compatible with her. Finally got an aide who had just finished school Which means that I have to be more hands on than I had in the past. Yesterday morning when she came to take care of her, she found her in a large amount of feces even though we had put on two depends and a pants liner; surrounded by several chucks. This was her first experience and mind. I felt that my mother, 92 years young was reaching that point and I didn’t know what to do. I begin to goggle and read about the dying experinece and finally came upon this blog. It has helped me so much because I have no nursing experience. I can go back to bed for a few hours and when I wake up I will call Hospice. It is time. I do not want to take her to a hospital. We have had two experiences that I don’t want to put her through. I knew when the time was ready I wouild know when to call Hospice. Also, I don’t think I am going to have a funeral or memorial service because even though she had done so much for folks, but everyone that she helped seemed to forget about her because with Alzheimer’s she could have a conversation with them. However, she connected with their spirit.

    Thank you for everyone’s ability to express your feelings.

    Comment by Georgia — March 12, 2012 @ 5:04 am

  69. Like Colin, I too am very worried about you and your children, and I hope you are getting help with handling the anguish you must feel at leaving your children behind. Much depends on their ages, I imagine, if they are capable of understanding what is going on. It might help you now and them later if you were to write them letters, to be opened on their birthdays, graduation days, wedding, so on, and one for sooner, to let them know none of this was their fault and you would never leave them by choice. Some hospice programs have counselors to work with children whose parents are dying or have passed, places they can go where it is safe to be angry or to mourn. Thank you for writing. I think about you every day, and I’m sure that everyone who reads your post wishes with me that there were something we could do.

    Comment by havealittletalk — March 12, 2012 @ 12:03 pm

  70. Yes, it sounds like it is time to call hospice. Perhaps people do remember all your mother did for others, but they just don’t know how to talk to her now, so they stay away. I would hope that they would come to a memorial service for your sake. to help you say goodbye, but every community is different. My father had few visitors as his Alzheimer’s progressed, but more people than expected, people from way back, high school, etc. came to his memorial service.

    Comment by havealittletalk — March 12, 2012 @ 12:11 pm

  71. I am very glad I found this website and these comments during this time of my life. I feel this would be a closure for my self. [Please dont mind the mispsellings in my words, because I know once i begin i will start to cry]
    I never really knew what it was like to loose someone close to until now. At 24 years old I was very forutnate to have both grandma’s from my parents side be living. But unfortuntely that luck ran out. My grandma from my dad’s side passed away last Saturday afternoon before my very eyes. She stopped eating a couple days, had the mentality that if she ate she would choke. I was very lucky to have driven up from VA that friday, day before she pass [she lived in PA] As soon as I arrived I knew something wasn’t right. It was almost as if she were gasping for air, and she only answered short anwers such as “Yeap, Nope or I guess so”. Her eyes always seemed to glance at the ceiling and she seemed quite anxious from time to time. I kept thinking that she would somehow bounce back and make it. Since there were several times before she was able to bounce back with a comeback and be better. My father, my cousin and I stayed with her through out that day reading her book she created “Memories” to allow her to take a trip down memory lane. She laughed and sometimes smiled, and it was nice to see her be that way. She kept mentioning “Please dont forget about me” or “I am scared” and I kept reassuring to not be afraid and that everything was going to be okay. Before we left we kept reassuring we’d be back tomorrow to finish reading to her.I remember sitting beside her that friday afternoon, occasionally holding her hand and commenting on her neatly painted finger nail poilish she always mantained just to take her mind off. Later that night we received a call that her tempture had risen to 103. Quickly our family came late that friday night, and she had a small white towel above her head. She was still responsive at that time as we tried to make her feel comfortable. After the nurse said her tempture had dropped we left and promsied we’d be back in the am. Once Saturday was here we received a call from the nursing home that she was no longer responsive to touches and voice. We arrived immedately that morning 10:30am I remember glancing at the clock. Her gasping for air got more difficult to see, and I kept wondering if she was really sleeping. An also learned of the “death rattle” sound. I heard it the day before but really knew what it was. It was so strong and loud it became to startle me. All morning we stayed by her side. Hoping. Praying that she’d somehow pull through. I remember holding her hand from time to see to notice the discolorating in her fingers. I knew that hope was rather useless at this time. I just wanted her to not suffer. I remember feeling her forehead to notice it was rather warmer than her body. Her hands began to be icy cold and the nurse showed us her legs which were becoming blothcy greyish and i began to know the end would probably around the corner it was a matter of time.
    At 2:37 I had a rather odd feeling, at this point in time my cousin and I were talking about the news and I remember looking at her because i no longer heard her gasping for air. It had stopped. Both of us became spooked and ran out of the room. Although my dad stayed where he was and stared at her. Quickly my cousin grabbed the nurse and I remember peeping into the room to see her breathing starting to slow. The nurse came back in and said this was it. My dad kept telling me he did not want me to see. But I had this feeling i had to see. I remember i slowly peered in agian to watch her. I really could of sworn i saw her turn to me, with one eye open [white] might I add gasping harder for air. An than all was quiet. I have to say I never seen that ever in my life. In a way her last moments are almost haunting. Her face, the discoloration in her face, the gasps of air, that death rattle. Everything was just so intense. I never thought Id EVER see her go. I kept thinking she was going to be better. But God had a different plan. It feels now that she is more closer to me now than before. She was pretty much my best friend. I always calledher and got adivce from her. I should of takeb more days to see her. The distance of 6 hours. The new full time job I had I should taken some time. I did see her last month, and i had a strnage feeling when i was leaving that would be the last time i saw her walking. I just miss her, i know she’s in a better place. Please forgive me for my long writing. I need to vent and i saw this site read all the comments and it brought rather a geat deal of peace to me. THANK YOU TO ALL who have left comments. I thought I was alone. Being her only granddaughter, to witness that, I know her memory of passing will forever be there but also her memories when I was child and our time spent will never disappear.

    Comment by Eleni — March 12, 2012 @ 6:18 pm

  72. You were there for her when you both really needed to be — she because she was scared, and you, because you will come to cherish these hours. You don’t say if you have had a child, but to me that moment, when you meet at last the one who has been living within you for so long, and hear that first cry, is the only comparable experience. I was fortunate that my dad’s hospice gave him enough morphine to ease his breathing so there wasn’t the rattle, but not so much that he was knocked out. I like very much the idea of reading to her from her memory book. That was a lovely idea. Now print out your comment twice, once for her book, and once for yours. Those who later read these will know of her and your love for one another.

    Comment by havealittletalk — March 12, 2012 @ 7:00 pm

  73. I believe I saw a hospice related question in earlier blogs. We delayed calling hospice that summer hoping, anticipating, praying, thinking maybe there was a chance. We thought calling hospice meant “giving up”. In retrospect, we were wrong. Calling hospice earlier would have helped tremendously. It would have helped us come to terms sooner rather than later. The book they provided was insightful. The caring professionals eased my mother’s obligations. I have to admit my most awe inspiring admiration for my mother came from watching, observing, and participating with mom in caring for her mother, my lovely grandmother. The love that I felt for my own mom overwhelmed me by being in the company of her caring for my grandmother. Mother becomes the child and the child becomes the mother. I am grateful for those sunny afternoons we could coax my grandmother into taking her shower, assisting her, bathing her, drying her, placing lotion all over her body, drying her hair, assisting her into her pajamas, and being with her. Of all the wonderful and beautiful memories I have of her, I treasure those afternoon summer days the most. It was profound, accepting her slow, but quick demise and living in her moment. I knew I was going to lose her someday soon, and the world paused for us during those brief and intimate moments. Of course, my grandmother being as quirky as always, would always thank us and ensure us that she too, would assist us as well to shower when we too got to be 93 years of age as she was. My grandmother kept her spirit until the last couple of days. She then withdrew into her sleep and refrained from contact with us. That was the hardest part. She was generous, loving, kind, compassionate, insightful, understanding, intelligent, elegant, sociable, fun natured, quick, and witty. And then she was silent. She slipped into heavy slumbers of sleep that she would not awaken from. Now I believe she was transitioning between worlds. Those heavy days prior to her dying, she withdrew. Perhaps it was the pain, the transition, the complexity of it all, I’m not sure. But an hour before she passed, when I was speaking to her with all my heart, she finally heard me, understood me, and nodded her head in response. And she cried. Though her eyes were closed, I wiped her tears. Even now, I go back to that moment and appreciate it and am grateful for it. Tears run down my face reflecting on that moment. My body still aches remembering that conversation and her tears. I miss my maternal grandmother so very much and I will always cherish what she shared with me; her life, her time, and her love.

    Comment by Grama's granddaughter — March 13, 2012 @ 4:50 pm

  74. She was a fine woman; in her will since she loved animals and did alot of pet therapy, she wanted everyone to donate to the animal shelter rather than buying flowers for her memorial. Thank you kindly, and I will follow your advice & make two copies. One for her book and one for my future book! (hopefully soon)

    Comment by Eleni — March 16, 2012 @ 2:13 pm

  75. Your blogs have helped me to understand what to look out for and I thank you for sharing your experiences.

    Comment by Julie — March 17, 2012 @ 3:35 pm

  76. Thank you for this blog post, and thank you to all people sharing their experiences. Me and my family are keeping vigil with my dying grandfather, who is in a coma from severe bleeding in his brain after a fall. I’m doing the night shift vigil and it helps to know what signs can mean that he has only an hour or so to live. Now I can stop being so worried with every difficult breath he takes, whether or not to phone the rest family who want to be there when he dies, to surround him with love when he goes on his final journey.
    My sincerest thanks!

    Comment by L0E — March 18, 2012 @ 9:38 am

  77. I am sitting here at the bedside of my father. The death rattles have been going on for hours. This is so hard.

    Comment by Penny — March 19, 2012 @ 12:25 am

  78. I am so sorry to hear that your father is near the end. My father passed away 10 days ago. I did not see him at the very end. Three very good nurses held his hand and gave him one more sponge bath while they waited. May God bless you both.

    Comment by Vicki St. John — March 19, 2012 @ 12:38 am

  79. Sorry to hear what you are going though at this time. I have read a few posts where people have mentioned the death rattle. Although this is not a nice experience for the family it does not cause discomfort to our loved one. But in my fathers case they did issue him with some medication to prevent this happening. It is something you could ask about.

    Comment by Colin — March 19, 2012 @ 3:58 am

  80. Thank you so much for this web site!! My mum who is only 48 years old is dying from small cell lung cancer its every where now, both me and my twin sister are only 24 years old and we have a child each of our own… both me and my sister are soooo close with my mum this is truly heart breaking! she was given less than 10 weeks on the 23rd augest so shes done well but to watch her in soooo much pain is soooo heart brecking, she dosnt want to pass and is very anxious. I have been with her 3 days stright now, i watched my best friends dad die 29 December 2011, he had the death rattle but was in a coma when she had it, my mum is awake but has the death rattle so im confussed, she is on oxygen 24/7 in alot of pain, drifts in and out of sleep ( but is on alot of morphine) can still talk a little. Can any body tell me what to expect?

    Comment by lisa — March 20, 2012 @ 3:23 am

  81. Mums finger have now started twitching?

    Comment by lisa — March 20, 2012 @ 3:33 am

  82. Thanks so much regarding giving me an update on this subject matter on your web site. Please understand that if a new post becomes available or if perhaps any variations occur to the current write-up, I would be considering reading a lot more and focusing on how to make good usage of those techniques you talk about. Thanks for your time and consideration of other individuals by making this web site available.

    Comment by http://mensengagementrings.ca — March 20, 2012 @ 3:29 pm

  83. My Mum died an hour ago. She just stopped breathing. I had noticed her fingers getting cooler. Perhaps bluer.An hour ago I was busy talking to her, kissing her, stroking her or quietly sitting. totally in the moment
    Couple of hours before I could read my book and listen to her gaping breaths, apneas and know we had time..
    She neve opened her eyes. She never acknowledged anyone for several days

    Comment by fibsedan — March 29, 2012 @ 1:18 am

  84. fibsedan – I am so sorry for your loss. I am currently caring for my 92 year old mother-in-law and I fear that the end is coming faster than any of us had planned. I’m glad this site is here to help me know what to watch for. I’m so paranoid though, I see all of these signs now. I just want her to have peace. I hate to see her in pain and suffering.

    Comment by aknott — March 30, 2012 @ 10:45 pm

  85. To each person assisting their Loved ones through hours upon hours of your own unanswered questions, unresolved emotions, forever lasting love, gratitude & kindness towards family or friend, may you find at least one post here that enables you to find strength to carry forth without wavering in spirit or purpose. May you, too, transition forth with a compassionate soul at your side when it is your turn. You each make a difference for the person you love, respect, & admire. Your loved one lives within you in your actions & contributions to our world.

    Comment by Grama's granddaughter — March 31, 2012 @ 3:05 am

  86. Thank you for this site, it has really helped me. My 87 year old mum broke her hip 4 weeks ago. since then she has had two different infectons and now last weekend she developed pneumonia. She has been very ill since then, and my sisters and I have been by her side almost constantly. She has been very sleepy but also very restless, clawing the air and shouting out. She sips a little drink occasionally and eats a mouthful or two, she itches constantly – which i don’t understand – and her temerature keeps going up and down, She sleeps nearly all the time, but yestaerday she wanted to get up and got in a wheelchair. She did the same this morning (at the home she;s in) and even had her nails done. But this afternoon she kept sleeping and crying, and calling out for people like her mum and dad. She didn’t recognise me or my sisiter and appeared very scared. Whe she eventually went to sleep, she didn’t really respond just opened her eyes occasionally, stared at us then closed them again. We’ve left her asleep at last. I keep thinking that she’s slowly going, but then today she seemed to be better for a bit. I feel guilty for thinking that she might die but I donlt want her to live bedridden and confused like she is. I just feel very confused.

    Comment by Sarah — April 12, 2012 @ 2:56 pm

  87. Dear Sarah,
    My mother is dying as we speak, going through much of the same that your mum is. As I am writing, I am thinking that your mum is probably at rest by now. These are all signs of impending death. I have been sitting with my mother and it is hard to watch the process. I pray for you and your mum that she will soon be at peace, if she isn’t yet.
    Suzanne

    Comment by Suzanne O'Toole Capannelli — April 15, 2012 @ 12:45 pm

  88. I know it is redundant, but thank you once again for your encouragement and advice on how to help loved ones transition from their lives. I lost my dad three years ago – after watching a strong, vibrant man succumb to heart and lung disease, and now I learned two months ago that my very dear cousin (who was like a sister to me) has stage 4 cancer. Her doctors made an “appointment” to meet with her next week… both at the same time (although their offices are miles apart, they are taking their time to explain what’s to come). She hasn’t tolerated her chemotherapy, had one problem after another creating delays in continued treatment, and at this point, I feel deep in my heart that this meeting will be the beginning of the end. Thanks to you and your fellow bloggers, I am going to try to help her and her two adult daughters through this terrible time. Will collect music for her to enjoy, and find things to read to her when she can no longer read for herself. I will try to encourage her daughters to call for hospice care when the time is right, to ease everyone through this passage. I will try to spread the word to her friends that it doesn’t matter what they say to her, but it means everything that they take time to speak with her and listen to her. I’ll do everything I can for her and feel much more comfortable knowing I’m not “doing it wrong”, thanks to you and your contributors. God bless you all.

    Comment by Maurya Beckum — April 17, 2012 @ 10:25 am

  89. I just read the various posts on here. We lost my dad in March of this year (2012). We never did find out what type of Cancer exactly he had. As much as we have National Medicare here in Canada, the doctor(s) at times are vague on a lot of answers. All we know is that the Cancer was in his lymphnodes but they never identified a primary site. This was troubling and the story is too long to get into I feel right now. We fought with him till the end and he refused to go to hospice as he felt that would be giving up.

    I stand by his decisions. I just wish we had been given a better understanding of what was goiing on. his blood pressure dropped and they said his magnesium and some other readings were all off. I think at the end he may have had an additional stroke – he had had one and survived it about a decade prior.

    I hope he is at peace now. He had been deemed terminal last summer, but like someone else said on here with their relative, it is wierd to see someone go from driving, walking, mobile functional, to more and more wheelchair bound, not driving, not walking to basically bedridden and then dieing all within basically 9 months. And this was someone who got checked by the doctor for various health issues.

    I’m trying to live my life and carry on but it is very hard without breaking into tears as I type this to think of how I miss him so much. I love my dad and always will. Thank you for letting me type this and thanks to all who have posted.

    All I can say to anyone who goes through this is keep fighting and surround yourself if possible with good people. It seems at time the information is limited and there is alot of bureaucracy in the system.

    I will fight Heart and stroke, cancer and many other things whatever way I can to help people. I hope I never suffer in my last days. I don’t think dad suffered much. I was able to talk with him the day he passed and I am thankful for that. I love you dad.

    Comment by mw — April 18, 2012 @ 12:22 am

  90. I am so glad I found these posts. I lost my dad, then my brother, and now my sister is in hospice care. Three completely different situations and paths to death. My dad died with such dignity and peace after a three year battle with brain cancer. I thought that was what death was all about. Peaceful, not scary. He died at home with his loved ones gathered all around him. He kept saying, “I love you very, very much.” He saw loved ones who had already passed, so I suppose he was hallucinating, but otherwise he was clear-headed until his last breath. The hospice nurse could tell when he was close. She showed us the various signs that said he was near death. His open mouth. Staring into space. One sign was how he held his hands in the air and moved his fingers as if he needed to sort through things.
    When my brother died suddenly in a car accident, I was devastated. I didn’t have a chance to say goodbye. I could actually feel grief course through me like an electric current. After about a year, I slowly started to be able to remember his life instead of going over and over in my head the events of his death. So I think it’s true that it takes a year of anniversaries to move forward. First Christmas, first birthday, first whatever.
    That was five years ago. My grief is softer now. Life does go on.
    But now, my sister is dying and the process is horrible. She has MS. She can’t speak. She can’t move. But the worst of it is that she is so very much afraid. It breaks my heart. She’s far too young to die.
    The hospice nurse just told us that my sister has probably less than a week left. From when I last saw my sister, this news wasn’t a surprise because she was so tired and barely aware of visitors. But, when I went to see her yesterday, she seemed stronger, more alert. Except that she was extremely agitated, couldn’t get comfortable. Calling out constantly. Moaning. Angry. This was new. And then, even though she was alert, she seemed to get confused when I tried to get her to answer ‘yes’ or ‘no’ questions (with a shake of her head, since she can’t speak). She would furrow her brow and look away like she couldn’t sort her thoughts. She can’t swallow on her own and has to have her throat suctioned. She can no longer eat and is on a feeding tube.
    So, to me, these new signs were confusing. I told my mom that maybe my sister was rallying a bit, but after reading the previous posts, perhaps what I thought was improvement is actually an indication that she is slipping further and the hospice nurse might be right.
    ??
    I’ve no idea what to say to comfort my sister and help her to not be afraid. This is so, so hard.

    Comment by MBT — April 24, 2012 @ 3:23 am

  91. Dear MBT, I am so sorry you are going through this and I hope that any readers familiar with the dying process those with MS face will write. It must be so much harder when you are young and still have all your faculties to deal with dying — and it must also be so much harder to watch happen.

    Can I offer another idea about what might be going on? I hesitate because I know so little — just what you wrote. I am glad that no one urged us to use a feeding tube or even an IV when my dad stopped being able to swallow. But for him it was just at the end — maybe it has been that way for a long time for your sister. He had been eating less and less, as is natural for those who are dying. I was told and have no reason not to believe that he had ceased to feel hunger. So he wouldn’t feel thirst, he had his mouth swabbed regularly. He probably would have “lived” longer with IVs — but why? But your sister is so much younger. It must be harder to stop nutrition for a younger person. But if the feeding tube is a new development, maybe her anger isn’t so much a fear of dying than a frustration at being forced to continue to live when there is no hope.

    Comment by havealittletalk — April 24, 2012 @ 11:48 am

  92. Thank you so much for your reply. Things have gotten worse today and I know the hospice nurse wants to discuss the feeding tube. I have first position medical power of attorney (probably not what it’s called, but I’m the first name designated, then others if I can’t or won’t). I told my family that if we decide to remove her tube that it’s a decision we all must make together. I can’t make that decision by myself. Too hard.
    Your blog is comforting and seeing your reply makes me feel like there is someone out there who understands. Living with a dying loved one is a lonely (and confusing) place to be.
    Thank you!

    Comment by MBT — April 24, 2012 @ 12:32 pm

  93. I will be thinking of you today. You are wise, I think, not to take on the burden of the decision alone. It is so sad that your sister cannot communicate her wishes. Are you ready to go? to stop fighting? — those questions might be too vague, but how much harder to ask, are you ready to die? I feel for you. Take care.

    Comment by havealittletalk — April 24, 2012 @ 1:03 pm

  94. Wow, i appreciate all these stories. my mom 68 yrs old has been unhealthy for yrs. finally diagnosed with operatable pancreatic cancer in june 2011. she had the surgery margines were clean. started chemo low dose. but kept on declining. months into chemo docs did a body scan due to her decline and weakness. cancer is still there and has spread to liver and colon. i live in Ga. mom lives in Il. they called hospice- i knew in my gut now was the time to leave my life and be with mom. she lives alone my sister is about a hour away but does not come everyday and only stays a few hours.i have been here since the end of march. and love that i can help her with “everything” she was here for me growing up in this world and i will be here with her leaving this world. everyday seems diff. she sleeps most of the day not really eating or drinking. i never know if today will be the day! i m afraid to leave even just to run errans cause i want to be with her as she takes her last breath. i cherish the talks we have when she is awake.is it wrong for me to pray for the end? mom has said she is sooo tired of being sick and is looking forward to where she is going. she has even mentioned seeing my dad calling her who past 1 1/2 ago. i don t know if she has weeks or days. her blood pressure is good- she is jundice and alert when woken- i am a little un easy not knowing when. i pray for all going through this- i feel blessed cause mom is not afraid therefore i am not afraid.however my days are long -her sleeping all day and my not knowing when. but i am very grateful to be here with her.

    Comment by lauren — April 28, 2012 @ 10:49 am

  95. Tonight my favorite aunt lies in our local hospital dying. A week ago 3 Dr.’s told her that her heart was just quivering and her lungs were full of fluid. She had an infection in her leg and a kidney infection as well. The Dr.s talked to her about being put on a ventilator and she refused. She was in ICU with tubes running everywhere. All of a sudden the medications that she had been unresponsive to started to work and on the 3rd day she was alert, laughing, and joking. Everyone thought the Dr.’s were wrong and maybe she had more time.

    I worked as Nursing home nurse for 6 years and as a hospice nurse for 3 before I got sick and had to go on disability. I loved being a nurse and I had to quit 6 years ago. There’s not a time I go to the hospital that I don’t shed a tear because I miss nursing. Your article was spot on and worded in an easy and understandable form. I’d like to share a couple of things I learned while working for hospice and at a nursing home. Many times people who are dying will seem like this is the end like my aunt did. But it’s been my experience that anywhere from 2-3 days to 2 weeks before dying, a terminal patient will rally and want to go places and do things they enjoy. They are alert and want to visit with friends and family and just when people start thinking the Dr.’s got it wrong, the person crashes and dies within a short amount of time. This rally time–I believe is a gift from God. A chance for the person who is dying to get their thoughts of death worked out, repair relationships, spend time with those they treasure most, and begin saying goodbye and pulling themselves out the world.

    Another observation I made is that sometimes a loved one will linger on an on. I would ask the family if there was someone who was important to the paitient who had not yet come and said good-bye. About 1/2 of the time the families were waiting for another family member to arrive and when they got there, the patient would slip away and die. The other 1/2 of the time the person who was dying just could not let go. There was so much love holding them back that they couldn’t go. My personal belief system is that our lives and our families continue on when we die. I believe there are loved ones on the other side that are encouraging the person dying to let go and move on. I imagine it’s like a tug-of-war holding on to what you know and love or letting go to those who have died before and want you to come home. At those times I would explain this to the vigilant family and tell them they might want to leave and get something to eat or go home and rest. Many, Many times within a short period of the family leaving the person could let go and die.
    By that time most of the family who had vowed to be there at the end could understand the dilemma their loved one might be going through and could leave and not feel guilty for not being there. That is why I am here writing this now. I had 2 wonderful days reminiscing with my aunt. Friends and family came and saw her and some even thought she might get well enough to go home until yesterday. Tonight she is lingering and I don’t want my love for her holding her back.
    God Bless all of you who have lost a loved one. I know what is is like by what I’ve seen and observed as a nurse but there’s nothing like personal experience. I lost my dad to bone cancer 3 years ago and 1 1/2 years ago I lost my 31 year old son suddenly. He laid down because he didn’t feel good and never woke up. The Dr. said it was Acute Respiratory Failure and most likely a heart attack. So I have walked this road with you.

    Comment by LuAnn — May 3, 2012 @ 1:57 am

  96. My Father passed away 3 months ago with Lung cancer. He had the death rattle only I did not know it was that until reading these articles. He was in a nursing home and the staff there told us his chest was congested so we did not think anything. Funny thing though, when I walked into his room that morning, I knew in my heart that it was the day he was going to die. He had the look of death on his face and it was heartbreaking. He was given something to dry up the congestion in his chest, along with a lot of morphine (which I believe eventually killed him). He was in a deep sleep and his chest was heaving up and down with that terrible sound. I had heard that the finger nails start to turn blue when the time is near, so when that started to happen, we all knew his time was near. Most of the family was with him and we kept talking to him and telling him it was okay for him to go as he suffered enough. About 3 hours later (just as is stepped out of the room of 5 mins) he passed away peacefully. I regret leaving the room but was assured that it was quick and peaceful. He just stopped breathing. We stayed with him for the next 4 hours and watched the changes in his body occur. I held his hand as the blood drained and my sister and sister washed his body and prepared him to be taken away. We were all so glad to be with him to the end. It was my first experience with death. I have to admit, I am now no longer afraid to die after witnessing this. They do go to a better place.

    Comment by Andrea — May 3, 2012 @ 3:05 am

  97. Thank you all so much for sharing your experiences. I lost my dad to lung cancer 9 years ago. He passed just 12 weeks after his diagnosis. My father-in-law might pass at any hour now and I am just sitting waiting to lend support to my grieving husband. I came to this sight after my husband came home briefly for dinner tonight to describe what I am reading to be the death rattle. All of the syptoms you describe are what he seems to be experiencing. What is most earie is my husband got up quickly after dinner and said he felt the need to get to the nursing home fast. This was a hour ago. Bless you all.

    Comment by Anonymous — May 6, 2012 @ 6:21 pm

  98. My Dad died 11 days ago, 2 weeks after we took him home on hospice. Up until this past fall, Dad was very active, shooting pool every morning, taking long road trips with my mom. He was diagnosed with bile duct cancer shortly before Christmas. He had radiation, and we had hope. We put him into a rehab nursing home to get him stronger, but he continued to be unable to eat and declined fast. He lost 60 pounds in 5 months, and the last two weeks of his life he never got out of the hospice bed. The last few days he began to hallucinate and would have times he didn’t recognize any of us. It was a horrible, beautiful experience. He was surrounded by his 9 kids and wife of 56 years round the clock the last two weeks of his life. the day he passed he was unconscious and began mottling in his hands. his last 10 minutes were beautiful–church bells were playing outside, and we opened the window so he could hear. I was holding his hand when he died. I am suffering huge waves of despair now and wondering how to replace some of the terrible imagery I have in my head of his last few months with happy memories. Watching the strongest man I know become a weak shell was awful. At times I feel so angry. The last few days he was seeing his Mama and Papa, so I pray there is an afterlife. But how do I know? I want a sign from him. He told us to pay close attention, and I have been… but all I see is a less beautiful world and I feel empty. I am grateful for this page, to see that I am not alone in these feelings. God bless you all.

    Comment by Missing Pops — May 10, 2012 @ 12:22 pm

  99. This is a great sharing site. I am with my 83 year old mom now as she is breathing her last breaths. She had a stroke 6 days ago and made it clear she wanted to die. She came to my home with hospice 3 days ago. She hasn’t eaten or drank for 5 days. Her family has been here and until today she was able to communicate. She has been sleeping considerably but arousable and could make herself clear. She said ” I want to die” and “it’s time”. We have been giving her oral morphine to help her drift off and until later today she has been aware. She is no longer responsive now and her eyes are closed and glassy . Now she is having cheyne-stokes breathing and is quite obtunded. Before the house was noisy with a 3 year old great granddaughter, two barking dogs and the activities of living. She was hearing the sounds of life (the life she created) around her. Her son (my brother) and his son had to return to Arizona today so the house is peaceful now. She is trying to make that transition from the body to the spirit. This shallow breathing has been going on a long time. It is an honor to have her here with me, even as I cry and have rushes of memories.

    I’m not religious nor is she but I know there is another world that her spirit will encounter. I told her I wanted to hear from her what is on the other side and she mumbled in slurred speech “I’ll never tell”. I believe she is at peace with no anxiety or pain right now. I am glad I was able to give her sips of oral morphine to ease the passage.

    Reading the experiences of others has been so helpful. My heart goes out to the mother with cancer and I hope she will get help and support now no matter what happens ahead. The children are so lucky to have her and she must get help now.

    Comment by nuwoman — May 13, 2012 @ 11:28 pm

  100. Wow! I am reading all of these stories and I feel comfort. My mom away passed august of last year and I saw all the stages of death before my eyes not knowing what was happening and still hoping she would wake and be ok again. And dr’s don’t tell you till the last final hours that a person is going to die, which makes waiting and hoping so much harder. Well, now I am watching it all over again with my husbands grandmother whom I love dearly and is like my own grandmother. Being that I’ve seen my mother pass and see all the same signs again, I feel like I know what’s to come but the family is still so hopeful and I don’t dare say “she won’t make it” but I feel so much hurt, especially for my husband because she was a mother to him. I saw her today, she didn’t recognize me and she is mumbling, talking about other things, has the glassy stare, yet, she ate really good, she evens looks good! Once again the hope comes into play. maybe it’s not her time? she IS only in the hospital for a urinary tract Infection? Will she be ok? I don’t know? I’m confused about her situation?

    Comment by Anonymous — May 15, 2012 @ 7:54 pm

  101. hello,I was looking on line for something to help me understand if my mom is starting to show signs of body shuting down..my mother has been diagnoised with liver cancer 4 years ago and in Dec. they said its now in her lungs..she has been doing great for the most part..had some close calls but she always pulls through..but i noticed 2 weeks ago a change in her..food doesnt taste good,lose of appetite,nause,vomiting,bodyaches,sleeps more..But she always tells me she is ok..I have this feeling in my stomach that its starting..the one thing i have feared the most..the thought of loseing my mother..sorry Im just lost..thanks for listening…

    Comment by Anonymous — May 17, 2012 @ 12:53 am

  102. Oh dear, I really don’t know. But you know moms will do that — say they are OK — protecting your child endures through all else, I think.

    Comment by havealittletalk — May 18, 2012 @ 9:49 am

  103. No one, it seems, can ever really answer that question definitively. What I have heard is that even hospice nurses are surprised — it seems, I think, more often how long someone lives than the reverse. I wish I had more to offer you.

    Comment by havealittletalk — May 18, 2012 @ 9:54 am

  104. Dear Anonymous, Missing Pops, Nu woman: Thank you for writing. I am sorry I haven’t been tending to my blogs this month; I am moving out of state, a fairly sudden but absolutely necessary event.

    I apologize to EVERYONE that there was an obscene comment on here for the past few weeks that I have just removed. That has never happened before. I will make sure I check in every day to make sure that doesn’t happen again.

    It seems so cruel that someone would choose this post and these comments as the one where they would place their filth. I am terribly sorry for the distress this may very well have caused any coming here for solace.

    I just discovered a second obscene comment. I will try to see if WordPress has a way of dealing with these wretched people, and I will try my best not to let another day go by without checking this isn’t recurring.

    Comment by havealittletalk — May 18, 2012 @ 10:02 am

  105. Thank you so much for writing because these questions regarding both rallying and guilt at not being there at the moment of death may well be most frequent asked here. I shall refer people to your comment.

    Comment by havealittletalk — May 18, 2012 @ 10:08 am

  106. I am sorry I am late getting back to you. Maybe by now your mom’s suffering is over. The comment just before yours (LuAnn’s) is very helpful. Peace be with you.

    Comment by havealittletalk — May 18, 2012 @ 10:14 am

  107. My heart goes out to all who have suffered through their loss. Thank you so much for hosting this blog and to all for sharing your experiences. It is true that there is not enough written about dying.
    My Dad was diagnosed with bile duct cancer and given “6 months maybe more” 4 1/2 years ago. I live far away from my folks and have traveled home since the prognosis several times thinking it would be the last Thanksgiving, Christmas, spring, summer I would spend with my dear Dad. He seemed to rally each time. I cherish the opportunity I had to spend quiet moments with Daddy.
    It is not to be so this time, I am not able to go home to be there for this final journey he is taking. I am dealing with it in knowing that my Dad understands and also the belief that we have a deep spiritual connection and that everything happens the way it does for a reason.
    My brother and sisters live closer and have been a tremendous support system for my Mom and Dad.
    There is much, much more to write but I will spare the details.
    Since I am not able to be there, I spend a lot of time researching and looking for answers dealing with the physical, clinical and spiritual aspect of death.
    My Dad said he was ready to go several times, he has gotten to the point where he does not speak anymore, hospice even called my family in a couple of days ago, saying he would probably go within a few hours. He is still hanging on, body deteriorating rapidly, it is gruesome and horrifying, but his nurse says his vitals are still strong. My sister says he looks like a mummy, just a fragment of our strong athletic Dad. We can prepare ourselves for the loss, but I don’t think anyone can be prepared to watch for hours, days, weeks, months. The signs are all there, but the body just does not want to go. We all seem to be on this journey together, it is painful, surreal, living in the in-between. Sometimes it is as if time has slowed, everything has blurred except the slow, loud ticking of the clock. We have gone through not wanting to lose our Dad to wishing for this long hard road to end, wishing for his peace, praying for Gods mercy and angels to guide my Dad home. My Dad will always live on in our hearts and in the values he taught us. I pray all the time for him to fly away and be at peace.

    There must be others out there who have stood by and been amazed at how much a body can go through before finally succumbing.

    It is all truly in Gods hands.

    Thank you so much for your kindness in keeping this blog

    Comment by From a distance — May 18, 2012 @ 3:54 pm

  108. Thank you for writing. I think one of the best decisions my mother and I ever made was to agree with hospice not to start an IV when my father got to the point he had forgotten how to swallow. Even without fluids, he lived four or five days — he was a large man, and I was told he had a lot of reserves to draw on. When he stopped producing urine, we were told it was likely he would die in the next 24 hours, and that proved correct. Take care.

    Comment by havealittletalk — May 18, 2012 @ 5:17 pm

  109. wondering

    Comment by wondering — May 18, 2012 @ 8:32 pm

  110. sorry about that error, was wondering about some symptoms and how to help my mother-in-law whose cancer has spread and is now on home hospice, not really talking, sometimes responsive, maybe a smile or a grunt, sometimes staring off at a religious picture, my sister-in-law asks her for a yes or a no answer and she’ll eventually do it but how much should we be expecting her to talk? and from the previous posts, it sounds like they understand and hear even though they are not responsive?? please clarify

    Comment by wondering — May 18, 2012 @ 8:38 pm

  111. also wondering if she is truly aware that she is dying? and should the family be talking about it w/ her? and also w/ a priest? thanks

    Comment by wondering — May 18, 2012 @ 8:47 pm

  112. My mum followed the pattern you brought to my attention. She died yesterday with no warning, she was poorly and living with me, but yesterday morning she seemed odd, out of sorts and I had that feeling that she was going to go. So I stumbled across this blog yesterday morning, read it trying to find out how someone dies and from 11 am to her death at 7.19 that evening she followed exact your example but in a quicker time frame. We don’t know why she went so quick she had not been diagnosed with any life threatening illness she just was poorly and weak. An autopsy will be done on Monday and I have to be interviewed by the police because her death was sudden. What I want to say is that I felt comfort with the knowledge I learnt on here from you and other posters I took refuge in just watching her jaw counting the time between breaths and as soon as the doctor said her oxygen level was getting low I knew we had about half an hour left.
    I got comfort from reading this forum and I express deep thanks to everyone who has shared their feelings. Xxxxxxxxxxxx

    Comment by Anonymous — May 19, 2012 @ 3:47 am

  113. Anonymous, blessings to you in this very hard time, and thanks for taking time to write.

    For Wondering: Has anyone been through a similar experience, wondering when or how to broach the topic of dying if you aren’t sure your loved one knows she is (and you and nurses are)? So much it seems to me might depend on family dynamics over a lifetime, how comfortable mom-in-law is with talking to her kids and spouses — and just yesterday I was reading a comment about a mom who insisted to her daughter she was OK, when obviously she wasn’t — as a mom that made perfect [irrational] sense to me. Maybe if the priest has been involved steadily he would be one to best sense Mom’s willingness to talk? Any ideas?

    Comment by havealittletalk — May 19, 2012 @ 8:20 am

  114. I am sitting next to my mothers bed in the nursing home. She is dying. Your post brought me a little peace during a horrible time. Thank you.

    Comment by Anonymous — May 19, 2012 @ 5:51 pm

  115. Working for hospice allowed me to see many family dynamics during the time a family member is dying. If there is any one thing I could say as a blanket answer as to whether a person should be told they are dying, it would be that “honesty is the best policy”. There is nothing worse than not telling someone they are dying. You can tell everyone in the family you can think of not to tell them but there is always someone that spills the beans. The dying person feels so betrayed and those who have kept the secret come down on the person that let the secret out. Before long sides are being taken, the dying person doesn’t trust anyone, and it just goes down hill. In these situations, I would ask myself, “How would I feel if this was kept from me?” I’d be angry and distrustful. I would want this time to put my life in order and if I hadn’t been told, I would have wasted precious time not saying the things I wanted to say to those I love.
    There may be a few situations you might hold back on not telling like an Alzheimer patient and having to tell them over and over. Everytime you tell them they hear it for the first time and they go through the intense grief over and over again.

    Comment by LuAnn — May 20, 2012 @ 9:21 pm

  116. I think it really depends on the person. In my dads case we never sat down and said it. It was unspoken because that’s the kind of man he was. He didn’t want to know. But he did know from things he said but it was never a decision to sit down with him and break the news.

    That’s what my dad wanted, but everyone is different.

    Comment by colin — May 21, 2012 @ 7:15 am

  117. My cousin is 43 years old, she diagonised with breast cancer 3 years ago.
    She had her breasts removed, then chemo and radiation treatments. The cancer came back last January in the form of 11 brain tumours. She fought so hard and in March she was told it was terminal and she would die in 2 months.

    Jacqui is a wonderful person, a terrific mum with an amazing husband and 2 beautiful girls. Jacks never gave up hope, even when her eye started to close she reasurred everyone ‘her eye was just resting’. She went into a coma, on Tuesday, she became unresponsive and taken by ambulance to the hospice. Her palative care nurse has been with her since March. Her husband is the most incredible person you could meet and he has been with Jacks constantly – supporting her while her body was slowly shutting down.

    I went to say goodbye and cried, laughed, shared memories and I let her know it was okay to go when she was ready that I would be okay. Many friends and family came in to sit and talk to Jackie. Her daughters birthday is tomorrow and she promised her she would be there to celebrate it. I don’t know how she is holding on, but she is, Jacki is stubborn and headstrong to the end, her breathing is shallow and rattling. The palative care nurses are incredible and are taking good care of her. I am slowly learning about the importance of being powerless, I am not afraid of her dying anymore, nor could I stop it.

    I can’t run away and hide, I won’t desert her because she matters to me, she matters that her last moments of her life will be to die peacefully and to live until she dies.

    I found great comfort in this site and thank you for allowing me to share my feelings and thoughts. There is a rainbow after the rain.
    Shelley

    Comment by Anonymous — May 21, 2012 @ 7:55 am

  118. We discussed dying with my father (passed away in January – lung cancer). For us it was the right thing to do. Dad already had funeral arrangements in place and had been paying it off for years so that is one thing the family did not have to worry about as most of his wishes was in the funeral plan. We were able to talk about what it would be like without him and how much we would miss his but that we would all be ok. We were able to assue him that mum would be taken care of. Dad talked about how he wanted to be dressed for the funeral etc. Him knowing he was dying made all the difference because we we all able to say the things we wanted which may not have happened if dad did not know he was dying. When the time finally came, we had already said our last good byes and was now telling him to go when he was ready. Everyone is different. For our family it was the best option.

    Comment by Andrea — May 21, 2012 @ 7:45 pm

  119. My 87 year old Mom is in the living room in a hospital bed dying. She was officially diagnosed one week ago, although she and I suspected that it was cancer that had spread to various organs. She had a total hysterectomy back in November for uterine cancer but was always talking about pain in different areas of her abdomen. I contacted Hospice the following day because I wanted her home and wished to be with her when the time comes. They are wonderful and very supportive.
    I lost my younger brother and older sister to cancer. The end was terrible to watch, especially the gasping for breath and noise. My mom awoke yesterday morning unable to get out of the bathroom and I had practically carry her back to bed. She had difficulty breathing and could not get enough air into her lungs. The hospice nurse suggested that I give her 0.2mg of morphine orally right away and he came soon after and gave her .2mg of Lorazepam. This helped immensely and she calmed down and was able to breath better. The nurse suggested that I give her 0.5 mg of morphine each hour as needed and every 4 hours the Lorazepam.
    Mom was awake for about 6 hours afterwards and has since drifted into a deep sleep. In the past 11hours she received 10 doses of morphine and 4 of the Lorazepan. Her breathing is gurgley but not labored. I pray that when the rattling starts it will not be too intense. I believe that the comfort care package that Hospice provided is just that. My mother and I had discussed her dying several times and we both agreed on a DNR. I will continue to administer the morphine because I think that it is helping her breathing and not struggling.
    I talk to her about seeing her two children that have gone, her mother, brother, husband and friends that are all waiting to see her. That Gods arms are open and he is calling for her. I am her sole surviving child and feel really blessed to have the strength, love and compassion to see her out. I will miss her terribly but am comforted by the knowledge that she will be suffering no more and will be in peace. God bless all those that have and will make this journey with their beloved.

    Comment by George — May 22, 2012 @ 5:54 am

  120. Ma’s gone. She died this morning in peace and without struggle. God was merciful. I continued to give her morphine throughout the night and some medication to dry out her mouth. Hospice was a God send. A man came this morning , we bathed her and dressed her. When we finished, she was gone. I am very sad but also very happy that she died without suffering and went quickly. Peace be with all.

    Comment by George — May 22, 2012 @ 12:29 pm

  121. Im thinking about everyone that has posted on here. Bless you all x

    Comment by Laura — May 22, 2012 @ 8:08 pm

  122. My brother is 52 and has been in hospice for 1 week. He’s had a brain tumor and stage IV lung cancer for 4 years. We were told he wouldn’t live longer than 6 mos to a year in 2008. He was doing pretty good when I saw him on Saturday, but now can’t stay awake, so he’s not eating or drinking anything. I feel in my heart that it’s coming quickly and even though i’ve been trying to prepare for it for 4 years, i feel like my heart is breaking… but, my strength comes from knowing that he’ll be welcomed into heaven by my grandma and most importantly that he won’t be suffering and hurting anymore as he has been for so long. I want to rejoice his life with God and no more pain. Thank you for letting me share this.

    Comment by RLP — May 23, 2012 @ 1:14 pm

  123. God bless you George….

    Comment by RLP — May 23, 2012 @ 1:18 pm

  124. wow i posted on here about 1 month ago i lft GA. for IL. to care for my mom on March 24, she had end stage pancreatic cancer- they said 4-6 months i could tell they were wrong. when i got there mom and i were curious “what is going to happen” they told us and gave us littature. we read it together. mom was like wow- but she wanted to know and so did i. as mom got weeker i kept reading all the info on the process of dying i took it all to heart. it helped me cause as it was happening i could see the process even though it was gradual. mom died in her bed as she wanted on may 12 2012 5:20 am i know cause i was laying next to her. it got bad towards the end but i had the knowledge of what was happening which helped me. i know alot of people do not want to read about it- but it is important to know the natual dying process that all our bodies go through. not reading about wont make it go away but it can help you understand what your loved one is going through.i ve been reading these blogs and appreciate everyones story.

    Comment by lauren — May 24, 2012 @ 7:10 am

  125. I too want to thank you for this blog and the post. My dad is in a hospice care facility as he has finally come to the end of a 12 year battle with non hodgkins lymphoma. It’s very difficult, but I’m so glad my dad will find peace very soon.

    Comment by Renae — May 24, 2012 @ 10:11 am

  126. Thank you all for writing. I am so glad that all who have found comfort here found this page.
    George’s moving posts remind me that with my father too he had morphine so his breathing wouldn’t be so labored. In his case this did not mean he was too drugged to come back to us for one final day, which I wrote about here: http://havealittletalk.wordpress.com/2010/10/18/imminent-death-and-spontaneous-return-to-mental-awareness/.
    Perhaps not being in pain even made this possible: who could ever know?
    Lauren, you and I think alike. I find it easier when I know what to expect. Maybe easier isn’t right, maybe it is more a matter of being able to detach a bit: now this is happening, and next will come that. Or maybe I mean easier in the same way that sometimes it seems the worse thing for me about illness is the not knowing — the waiting for a diagnosis is so hard.

    Comment by havealittletalk — May 25, 2012 @ 6:24 am

  127. It’s interesing reading everyones experience. I first posted here when my father passed away last August, now nine months in but I still have a niggleing question.

    I knew my father was near the end, I was looking after him at home, he was eatting less and drinking less, but he was still very aware, still talking, still eatting, and drinking. On the morning of the day he passed away he asked to feed himself. I gave him his medication which he swallowed as usual. My mother had hurt her wrist a few weeks before and we had to visit the hospital to have the plaster removed.. I told my father and left my sister with him. He was worried about my mum and joked that he could walk better than she could.

    I’m not really clear what happened in those interveneving few hours. The hospice nurse arrived with a doctor and they decided to have a pump to inject all his medication. They told me he would pass away in the next six hours.

    My father looked concerned when they put the pump in, but he was so pleased my mum was ok.
    My mother is still haunted by the fact that he was talking and eatting and I guess I am a little. He wasn’t at the point some have mentioned on here.
    It was felt like the medication sent him on his way. It was so peaceful, it was beautiful.

    But I’m still not sure why they decided to do that. Can anyone shed light on this? Would they have decided it was his time and use the drugs to hurry the process?

    Comment by Colo — May 25, 2012 @ 6:59 am

  128. i understand what your saying- when they started the pain meds for my mom it seemed to go faster. but when her pain was gone she was more relaxed in accepting what was going to happen. hospice is about comfort and dignity. i guess there view is why pro long the pain and agnony.the drugs did nt kill my mom the cancer did- but the meds let her mind and body relax so that it could go through the shutting down process.when my moms pain was under control then she started the “terminal restlessness” that was hard- she was not her self any more wanting her weak and frail body to get up and go or do things but she did nt know what or where,then she started seeing and hearing people in her room. they seem to bring her comfort. me to knowing that she was not alone going on this jorney. are biggest fear was her falling and ending up in the hospital for broken bones.that would of been really bad when we knew her outcome and she wanted to die in her bed. so they sadated her-after that it was meds every 4 hours- liquid morphine and ativan.this stopped the
    “terminal restlessness” she could still hear me and feel me but her mind & body was now in fast gear for the shutting down process and her soul had already begun to transition to another place.i liked hospice and there ways.they were loving and compassionate to me and my mom.if it were nt for the meds she would have suffered a very painful end. like i mentioned in a previous blog- i read all the info on the dieing process i took it all to heart cause i wanted to know what could happen and how to respond. reading that and having that knowledge help me as i saw my mom transition to another place right in front of me. i am sorry for your loss,let your mom know i also learned it is human nature for us to think eating and drinking means we are better- not when you are dying,when your dying the body requires no food but we still have our favorite foods- however it does not change the outcome. i believe i will see my mom and dad again when it is my turn. again i am sorry for your loss.

    Comment by lauren — May 26, 2012 @ 5:45 am

  129. What a blessing to be able to actually have my questions answered openly and honestly. I thank all who have shared and pray blessing and piece upon you all. My mom has been told she has a couple months to maybe a year.

    Comment by MrsT — June 4, 2012 @ 2:49 pm

  130. a week ago my brother went to the hospital because he couldnt breathe, they said he had pnenomia and took fluid out of his lungs, he was sent home the next day, two days after that he did not look good so his wife took him to another hospital (because he did not want to go back to the other one because they were mean to him and actually dropped him because he cant get up by himself due to a stroke 5 yrs. ago) they took tests and found out he had cancer in his liver, chest cavity wall and it had went to his brain, I went to see him the next day and he was so out of it I could not believe in that one day he turned for the worst, Hospice was called in and they ended up taking him to a nursing home the next day, rigtht now he is holding on but they have him pretty much drugged up and mostly sleeps, the one thing about this and what bothering me is that they have no IV in him at all, and he can not eat by himself becasue he is out of it, and they come in once in awhile to wet his lips with one of them spongie things, I guess he always said that if anything ever happened to him he did not want to be on life support, Is an IV life support, to me they are starving him, someone please help me to understand this, he still has the fluid in his lungs from the pnemonia and coughs and gurggles every once in awhile..

    Comment by tina — June 11, 2012 @ 3:37 pm

  131. oh wow, I realy feel for you. I am in Canada, so don’t know where you are visavis the medical system; while we have publicly funded medical, it is really strapped, and I know when my dad passed and near the end, I still – 3 months later – question some of the way things were handled. Trying to get answers, trying to get clear understanding of when certain symptoms present themselves(e.g. he was very tired…and I thought a blood transfusion which they did do, would perk him up – but in the end he still passed of cancer which they never determined an origin for – only that it was in his lymphnodes).

    Try to ask the questions of them, and demand to speak to someone in charge or find out who (e.g. your brother’s wife) will be given the info and answers you need. Half the time the staff is so afraid I think of lawsuits by giving wrong info, they won’t tell you anything. I would rather have been told a few more things like “if XXXXX’s wife is up here, she can talk and we will answer the questions …” or “dr. XXX will speak to XXXXXX’s wife about XXXXXXX’s condition”.

    We had prepared as much as possible for his passing – when I left the hospital each day for the 1 1/2 months he was back in there (after having trouble breathing), I always prepared like it might be the last time I saw him alive; turns out I was up there later in the day on the day he passed (before he passed) and him passing was not a huge surprise, more like shock; the doctor had forwarned us that he was going down hill and probably near the end.

    btw he was off iv as they were going to move him to some kind of seniors facility – and said he couldn’t be on IV; I think that really caused him to spiral downward. Just my opinion

    Good luck to you and god bless; my thoughts are with you.

    Cancer is such an awful disease!

    Comment by mw — June 11, 2012 @ 5:30 pm

  132. Wow i feel for you. going through this with someone you love is very hard. i stayed with mom from the time they called hospice till the end it was about 6 weeks. i left my life in georgia to be in illinois with mom to die. it was a hard journey but one i was glad to be on. what helped me was the info about dying. i took it all to heart. i learned dying is a process that we all go through with a terminal illness. i learned when the body begins the shutting down process much comes into play- one is food is no longer required as there is no more hunger.they say food can cause more stress on a dying body. this is hard to think about cause as humans we think of food as health and nutrition. but at the end of life it is not a requirement or a need. what your going through is personel. that is how i felt with my mom, but i swore i would not leave her alone and i did nt- i watched the whole thing and do not have any regrets. be strong and be there.we seem to transition to another world or place if you will when our end is near. so that said near the end i felt way more stress then my mom did. one week before she passed she was talking and seeing many people that i could not see or hear- she seemed comforted by them- entertained and not afraid of them. so even though i could not see or hear them i knew she was nt alone and i to was comforted..again your journey is personal where they are going we will all be someday. i am sorry for your pain- stay strong.

    Comment by Anonymous — June 11, 2012 @ 5:53 pm

  133. Thank-you for the replys, they are helping me to understand this ,and also i am sorry to hear of all your losses and pain.. He also lays there and reaches for the sky, one time he grabbed at his wifes hand and held it up with his, like he wanted to take her with him, and he mumbles alot so we really don’t know what he is saying, he opened his eyes yesterday when my mom was talking to him and said ma, she is 83 yrs. old and is taking this really hard, she says no one should go before their parent, he is the oldest of all of us and their are 10 of us, but she is staying strong just like the rest of us for him. and as we all are for her..

    Comment by tina — June 11, 2012 @ 7:44 pm

  134. My mom is 82 years old and has been diagnosed with dementia. The doctor has given her about three weeks to live. This seemed to have all happened so fast. She lost a daughter and sister in the last three months, which he feels affected how fast she got sick. She has been in and out of the hospital with dehydration. Basically, she gets to be unresponsive. She won’t eat, drink or take her medications. We are all very saddened by this, but we don’t want her to suffer.

    It was good for me to read the comments that you have all made. Sharing is good for those of us who are going through what you have already experienced. Thank you all so much

    Comment by Dorothy — June 13, 2012 @ 3:24 pm

  135. You have obviously touched on a subject hidden from us our entire lives. We all face this stone cold ignorant don’t we? If it weren’t for hospice educating me step by step as my mother lay dying I don’t know what I would have done. Modeling? Mottling? I still don’t know what the word officially is, but I certainly know the process now. Man oh man. Who would thunk? Not me,
    The whole thing became a technical lesson in biology mixed with the emotions of “oh my god my mother is dying,” It was an awful lot to take in all at once. I wish, somewhere along the line, maybe in school when we were learning about birth, we could have learned a bit about death. I would have been extremely grateful for that knowledge during those 4 long sleepless days and nights.

    Comment by micah mcdaniel — June 14, 2012 @ 9:55 am

  136. Look for my poem under my blog called “As My Mother Lay Dying.” My name is Maidensolo

    George, my mom went peacefully at age 87 also. It took her 4 days. The hospice nurse called her superwoman. She died as she lived. She would rally. Her blood pressure would go down to 40 over 10 and then bounce back up to 70 over 40 and 8 hours later it would slip back down. She did this for 4 days so when she “went” none of us really believed it. We waited 4 minutes to see it was for real. When we realized it , we just stood there looking at her, realizing this bull of a woman, this pioneer spirit, this unstoppable force of nature was still and quiet. She was gone.
    She wasn’t in there any more. I think she floated up and out of the room when we weren’t looking. Even though we were all standing around her bed. My Dad, Grandma, Uncle, Aunt; basically my entire family was together now and I was alone. Suddenly I got really really sad, but I was so so grateful that God blessed her with so much mercy that none us knew she had even slipped away. It was the first thing she had ever done in her life that she didn’t turn into a huge production.
    My mom lived in fear most of the time. The depression did a lot of that. She feared poverty, loneliness, hunger, illness, and certainly death. I was grateful that the dementia made it so that she did not realize she was dying. She was so fearful that every ER visit caused a stroke. I did not have power of attorney. I couldn’t convince my sister of that, of the nurse at the assisted living center. They were constantly sendiing her to the ER and I was constantly begging them not to. And it always wound up in another stroke. I still have things I have to work out too. My mom was a bad judge of character and gave it to the wrong child. She waited until it was too late to try to change it.

    Comment by micah mcdaniel — June 14, 2012 @ 10:25 am

  137. Last night at 8:30 pm. my brother lost his battle with cancer, he is now in a better place and is pain free.

    Comment by Anonymous — June 14, 2012 @ 3:28 pm

  138. My beautiful husband of 50 years was diagnosed three years ago with Stage IV metastatic prostate cancer and last year he was diagnosis with an uncommon form of dementia – frontotemporal lobar dementia. While his cancer care is palliative he is holding his own with the latest form of therapy. The dementia however is more than heartbreaking – he had a mind that was brighter than the heavens, a marathon runner, a triathlete, a Master SCUBA diver and a scientist. I thought for certain he was dying the other day – sleeping long hours and long naps during the day. I looked up “how to know if someone is dying” and found this blog. Reading everyone’s responses and comments has tears streaming down my face – what loving kindness is expressed for those that were with their loved one at the time they left this world has touched my heart and just what I needed in the way of comfort for this moment. My sweetheart is napping now but today is not the day he will be leaving. Thank you all for sharing your experience. For me – knowing what to expect and the process is easier to cope with than constantly wondering. Blessings to everyone that took the time to write – you helped.

    Comment by Laurie C. — June 15, 2012 @ 3:30 pm

  139. I found this vary, vary,vary helpful I lost my great grandmother 6/19/2012 but about to weeks before that she was on a ventilator the family and I decided to take her off so u know what came next how much longer no one will give us a straight answer it’s not like I was asking for the date and time it was just that she was in an out of the hospital so much I knew her body couldn’t take much more and did I mention she was 88 years old with cancer and for about three days before she passed her blood pressure was 70/40 and I knew that wasn’t good so that’s when I started my sruch and came up on this and it walked me through till the end

    Comment by Anonymous — June 22, 2012 @ 6:14 am

  140. I also found the blog and stories incredibly helpful. My grandma (who is 93 and in a nursing home) has not eaten in almost a week and only gets her mouth swabbed. We have thought that death was imminent for a number of days now, but especially last night as her vitals dropped even lower and signs of mottling started showing up in her feet. My parents even spent another night at the nursing home with her, but this morning her vitals are all back up (not normal but higher than they have been in a few days). It’s hard living this “waiting” game at times when we know that she’s mentally wanting to leave this earth for better things, but her body just doesn’t seem to want to let go.

    Comment by Kristin — June 24, 2012 @ 1:49 pm

  141. My Mom’s cancer is now growing outside of her body, and she is in so, so much pain. I live two thousand miles away. I just got back from a week visit with her a week ago. As soon as my husband and I left her place, I told him now that she has seen all her kiddos recently, she will probably die.

    We have been told today, that she is now on a downward slope. I am not to let on to her that I know she is dying, she does not want her kiddos to know. But, I knew, just like when I saw her last year at our first family reunion, I knew she was very sick, sure enough she wound up with cancer returning, and into the hospital within weeks after the reunion.

    I want to be with her, but she doesn’t want that. I don’t want to wait til that “CALL”. This is so dern hard. She rally’s for people, just so they won’t see she’s sick. She doesn’t want to seem weak, plus she does not want pity. I don’t pity her, I pray with and for her. I don’t like that she is in so much pain, and cannot truly get relief.

    I know that God has some reason for her to still be alive, I just pray that reason is fulfilled quickly and she has no pain and is at peace. I pray her suffering is not drawn out any longer.

    I don’t wish for her to die, but I don’t wish her to live in so much agonizing pain. The other day she told me, there’s a 38 in the night stand, I might as well get it out and use it. I know she does not want to live like this. She is no longer living at home as of this week. So I don’t have a need to worry about or remove the 38.

    But, when she mentioned the 38, I told her I’d be the one cleaning the mess that I wouldn’t like that. Then, I broke down and cried and told her, I actually understood why she would even go there in her thinking. I also, know she would not have done that. She loves Christ, too much to kill herself.

    I am rambling on. Bless you all who have taken the time to read this.

    Comment by MrsT — June 29, 2012 @ 10:05 pm

  142. I was with my mother (85) when she passed away last week. Death rattle, apnea the last half hour of her life. Just before that she lost control of her bowels and it was the worst smell I have ever smelled. She had kidney cancer metasticized to lungs and bone. In February of 2012 she had a spell where she passed out for a second and then said she felt like her throat split in half. She lost her appetite and ate about 500 calories a day in February and March, but by April was consuming less than 400. In May she consumed maybe 100 calories a day and even less in June, she died on June 19, 2012. She had never been sick at all before the spell she had in February. She lost probably 50 pounds. She was in a coma for about 36 hours prior to death. She had difficulty swallowing but some moron doctor prescribed her oxycontin for the pain from the bone cancer in her spine, but she couldn’t swallow a pill, so vomited incessantly. Oxycontin cannot be given in liquid form. And it cannot be crushed. I think it was really wrong for a doctor to make a person who can’t swallow, swallow a pill. When my mother passed, the nurse told me to rub her shoulder. I did and suddenly her heart started beating again for a few seconds, Maybe she had a message for me. I am completely spooked by having witnessed her death – the smells, the sound, the image haunt me every day. She was in a nursing home and their main concern is getting the drugs into these elderly patients. I was surprised at the way they kind of euthanize them, always there with more pain meds even if there is no pain. I had to fight Hospice every step of the way about the morphine because my mother was allergic to it. Hospice is so gung ho on morphine. The nursing home told me she was going to die two weeks earlier, but she rallied for a few days before she began her final decline. Prayers to all of you who have lost or are losing loved ones. Listening to the last breaths was horrific but had I not been there, I am certain my mother would have died alone. My mother had no facial expressions for 36 hours before her death until the very last second and then there was a slight grimace or raising of eyebrows. She fought death every step of the way, wanted to live to be 98 like her own mother did. She went to the hospital on April 30th, walked in on her own and never walked again because they wouldn’t let her. Slept most of the rest of her life mostly because of the drugs. Still hard to believe she is gone.

    Comment by Jayne — June 30, 2012 @ 1:33 am

  143. The comment about “not walking again because they wouldn’t let her” seems to be a story I’ve heard before, and I’ve seen it before. There seems to be “agism” where someone can walk into hospital and the system allows them to lose their walking and not let them get it back; they will say the person is too tired etc….I think the system just won’t make the effort for some reason. I don’t blame the workers, I blame the hand tieing that is done on the workers in my opionion.

    Comment by M — June 30, 2012 @ 1:39 am

  144. “She had difficulty swallowing but some moron doctor prescribed her oxycontin for the pain from the bone cancer in her spine, but she couldn’t swallow a pill, so vomited incessantly. Oxycontin cannot be given in liquid form. And it cannot be crushed. I think it was really wrong for a doctor to make a person who can’t swallow, swallow a pill.”
    This is so very familiar!! My Darling Dad lost the fight 3 weeks ago, Advanced Metastatic Adenocarcinoma with un-known primary. It was in his bones, lungs,stomach. The ‘specialist cancer nurse’ changed Dad on to Oxycontin so that ‘he would be more aware of what is going on around him’……I lost it then, why would my dad want to be more aware of dying? And yes the vomiting and retching started again. He was ‘rescued’ by a sympathetic nurse who ordered a return to morphine . I think the oxycontin is cheaper, that it was a cost cutting exercise .He didn’t die peacefully.

    Comment by Eddie's Las — July 6, 2012 @ 7:05 pm

  145. Re the poster whose father “didn’t die peacefully”; I am so sorry. The wording you used …cancer of unknown primary, that was my dad who passed in March. In his lymphnodes but too far advanced; diagnosed in Aug 2011, and passed in March. approx 7 months and they gave him approx 6. I don’t know what to say; so amazing how someone just goes downhill; value your health and those of your loved one’s; you don’t know when it could change in a heartbeat; god bless my dad and yours (op).

    Comment by M — July 7, 2012 @ 1:18 am

  146. Thank you so much for the original blog and subsequent posts, all so helpful as I searched for information to soothe my distress when my 83 year old mother broke her hip just over two months ago. Already deep in dementia, this turned out to be an off the cliff catastrophe for her. She died this morning at 5:30, less than 90 days after the fall and successful surgery to repair the hip. The surgeon explained there were those who fought back and those who gave up; she gave up. Hospital staff couldn’t persuade or cajole her to walk again. We moved her to a nursing home where, I have to say, they took incredibly good care of her, and she deteriorated very quickly over the last month. She lost the ability to speak or communicate, began experiencing involuntary movement of hands and head, made sometimes quiet and sometimes quite loud involuntary noise (which we don’t think indicated she was in pain although the moaning quality could have suggested that) and gradually lost the ability to swallow. Everything I’ve read indicated this would be her demise. She stopped swallowing entirely three days ago and they switched to palliative care. I saw her two days ago and she seemed agitated but the movement of her head and hands could have been involuntary; by yesterday, the day before she died, she was still and peaceful. The nurse commented that she seemed at peace, wasn’t fighting the process, and she thought there were hours or days left, not longer. It still came as a surprise but overall it’s a merciful release as there was no quality of life for her and hadn’t been for some time. Thanks for this opportunity to share and begin the grief process.

    Comment by Clare — July 14, 2012 @ 8:35 am

  147. This whole week I have had the weirdest dreams. Actually, they are more like nightmares. I just wish I could wake up now. One week ago I was out with mom and enjoying the day together just the two of us(7-9-12). We actually had 2 good days together. On Sunday, mom called me early and said that dinner was ready. She said she felt great so she wanted to cook something and she was hungry. I told her to go ahead and eat and we would be up shortly. When we got there she had fixed meatloaf, corn dogs, corn off the cob, green beans, spinach, scalloped potatoes, cornbread, and I am sure I am forgetting something. Oh she had fixed peanut butter pinwheels. She wanted to take something over to the Oncologist on Monday and she wanted to take peanut butter pinwheels and chewie charlies. So after dinner mom wanted me to make chewie charlies because she can’t do a lot of stirring which is what is involved in making them. While I made the chewie charlies she sat in the kitchen. Then after they finished and dried she wanted to make 4 plates up to take over to them. Marissa and I fixed them up while she watched. When we left there we kissed her and hugged her and told her that we loved her. She told us the same thing. That night we talked on the phone and then Monday morning I picked her up and she was outside ready to go. Mom and I went to her Dr. appointment and I should have known something was up, but it just didn’t register. She gave out the goodies and said that she wanted to thank them for everything that they had done for her. She joked around with them and she said no matter what you always have to have a positive attitude. They talked about how good she looked and about how she was so positive. When we left there we went to walmart. She refused to get in a wheelchair and said that she would walk to get what she needed.She said in the car on the way home that it was just like old times when we used to run around together when we lived in Florida. After that we went back to her house. Mom was a little tired, but that was to be expected. She hadn’t gone anywhere except when she went with me. When I left there I kissed and hugged mom and told her that I loved her and she told me the same. Then when I went toward the door she same and gave me another hug. I wish I would have known that would be the last time that I would see her alive. We talked that night and she said she was tired and she was going to go to bed that she loved me and she would call me in the morning. At 8:56 A.M. I got a call from dad that mom was dying. I said what do you mean he said she is dying. She drank some coffee and then she slumped over. He said he was giving her cpr and that the rescue squad was on their way. I was there by 3 after 9 and I started to do cpr ( which I never thought I would have to do and really I didn’t want to see her that way). Mom was already gone. When I opened her eyes there was no light in them anymore. We tried to save her, but she was gone! I wish I would have known that she was leaving us. I should have known though because I had a dream about 6 months ago that she died. But I thought if I could get her to the Dr. that I could change that. I am still in shock and I will probably be for a while. Whenever I had dreams like that I always told mom. I hadn’t told her this time because I didn’t want her to know. Mom always said when it was her time to go she would go. She told us a story that happened when she first had the reaction to the 1st chemo they did. She said it was beautiful. All of these colored bubbles where coming at me and then it all went down to 1 and as it went in her mouth she was gone. I think the only reason she came back then was because it was on my birthday. She said when she woke up there was about 20 drs around her. Her first chemo treatment was 3-29-12 and she was diagnosed on 2-5-12 with stage 4 lung cancer. I still don’t get why it took them 2 months to do her 1st treatment. I know mom would be mad at me now and telling me to stop second guessing yourself. Well it is still hard for me to deal with. Mom was my world and now she is gone. Sorry for the super long post but I wanted to relay everything that had happened.

    Comment by Karen McReynolds — July 16, 2012 @ 1:19 pm

  148. {{{Karen McReynolds}}}Thank you for sharing.

    Comment by Anonymous — July 16, 2012 @ 1:27 pm

  149. Karen McReynolds: Your story made me want to pray for you – it was so touching. The events are similar in ways to my mom’s passing in May. I had been out with her during the day; we did some errands, and she was tired in the evening. We had even been to the doctor the day before. She said to me it was ok to leave her for a few minutes as I was just going to another room at her place; She (the medics figure) had a cardiac arrest and fell to the floor. My efforts fo CPR and the medics effort was non successful. I second guess whether I could have done more if my CPR technique had been more precise (my thoughts?); I was scared of hurting her; I was in shock; her eyes as I recall (Again – the shock has blurred the memory a tad), her eyes looked empty. I had gone thru this with my father earlier this year. Now, just like that, she was gone.

    She was my world. I loved her. She was my rock in a lot of ways. I cry as I type this. I miss my mother and I love her so much.
    I guess it was her time. God bless you mom. And for you Karen, god bless your mom and you too – and thanks for sharing

    Comment by M — July 16, 2012 @ 6:43 pm

  150. Anonymous and M. Thank you for replying. I had a question for you M. Did you think or have any idea that your mom was going to pass? For example, a lot of people say that they do a “death rattle” where the sounds of their breathing is just horrible. Mom never did that so I thought things were fine.

    Comment by Karen McReynolds — July 16, 2012 @ 9:09 pm

  151. When I found her (after i heard a bang/thud..she was I think doing a death gurgling sound, and that’s what made me realize it didn’t look good (I think I was in disbelieft and just kept hoping I was wrong…); I had heard that kind of noise as my father passed in hospital, and thought he was still alive, but I think it was the death rattle thing….. there was no indication that mom would pass (until Ifound her), but that day she did say she had back pain – lower – but didn’t seem too concerned and I even said to go to hosp – thinking it was arthritis -but she didn’t want to go; had I not been so tired from all that had been going on, I might have maybe – big maybe – pushed to get her to hospital that night, hours before it all happened…but I had no idea…. I’ve been told to not beat myself up or be so hard on self….. Hope this helps Karen

    Comment by M — July 16, 2012 @ 9:23 pm

  152. Thank you M. I was just wondering because other than the occasional breathing problems and needing oxygen mom did great with the chemo. She had told me that she was having pain in her chest area and asked if it could be heartburn I told her I didn’t know. More than likely that was the cancer causing her pain. But she wouldn’t like to tell me when she was in pain. She knew how much I worried. That morning dad said she was fine until the end. He heard this god awful sound and that is what made him turn to her. They were sitting on the couch together. She was gone that quick though. He tried to do cpr. When I got there when he did the breath for her it was the weirdest sound that I have ever heard coming out of her. When I did the chest compressions I think I may have broke a rib or two. I tried to bring her back, but she didn’t want to live in pain. It was her time to go, but it doesn’t make it any easier for me. No, don’t beat yourself up about it. As my mom told me several times, especially in the last week, when it is my time to go I will check out. Neither of our mothers would want us to dwell on the what if’s because it wouldn’t have changed the outcome. It was their time to go and someday many years from now we will be reunited with them.

    Comment by Karen McReynolds — July 17, 2012 @ 12:57 am

  153. Karen, thank you for your thoughts. I’d be lieing if I didn’t say I was crying right now. I guess things get a “little” less painful each day, but then there are days that feel like a roller coaster..the low lows and then feeling ok (At the peak of the roller coaster). I guess the mystery of life is we don’t know, and even when we think we have a good idea of when something might happen we are not always right. With dad (my dad), we had been told he probably was going to pass within 6 mths of Aug 2011..and it was fairly close to that …1 mth more he survived. Mom , we had no reason to really think she wasn’t going to weather his passing, but maybe her not expressing her emotions clearly (not her fault) and just everything happening (so much emotion from losing dad etc), it set it up for things to be missed. Don’t beat yourself up about the CPR either; they often said to us with dad – and he had a Do not resucitate (DNR), but mom we hadn’t got to that clarity of what to do, so we did try it. They say there is a risk to break bones, and that was my fear, but I would rather have her alive today (assuming she wasn’t going to live as a vegetable). But this was not “the plan” I guess.

    Just a side note (Without you giving out too much personal info), I am always curious where in the world people are; I am in the Western part of Canada (There – that’s pretty generic : ) ) … curious where you are? Canada? US? Europe?

    Comment by M — July 17, 2012 @ 10:38 am

  154. M I am in the US. I live on the east side of the US. They didn’t give us a time for mom. The Dr. said that it wasn’t possible to pinpoint and that everyone was different. Oh believe me it was a week ago today that I got the call from dad. I have cried, cried, cried so many times. I have gotten better and on occasion smile when I think about her. But then a song, food, place, or even something someone says will remind me of her. I talked to a woman yesterday who came over to mom’s house. She lost her dad 30 years ago. She was in her 20′s when he passed. She said it never goes away and she misses him so much. She knew how close mom and I were and she said she was the same with her dad. I know that we have to go on without them, but it is just so hard.
    I am the youngest of 5 and I am in my early 40′s right now. I am the only one living close to mom and dad. Now i have to help dad get through this.

    Comment by Karen McReynolds — July 17, 2012 @ 11:54 am

  155. I would like to comment on your recent losses, I am truly sorry you have lost someone very close to you. It is the most difficult event we endure in this life, to see our loved one thriving and then withering away and leaving. My family and I compare the loss of my grandmother to that of a beautiful flower. Just as a flower blooms, my grandmother bloomed and provided so much love, joy, comfort, peace, appreciation, beauty, laughter, and memories. Just as a flower slowly or quickly fades, we saw my grandmother fade. We weren’t ready to let her go, but eventually seeing her in so much pain and living a life she herself would not have wanted, we “accepted” her loss. Personally, my own beliefs in my own faith helped very much. That is a personal belief. The one thing I did want to share with you is that reaching out and surrounding yourself with people who will “walk” this journey with you including family, friends, neighbors, strangers, and internet supporters will help tremendously if you allow it. I am surprised how many people comforted me during my initial pain and were open and vulnerable themselves to share their personal stories. Again, I am sorry for your loss. Please don’t underestimate that there will be people who will not take away the pain, but will help you get through it.

    Comment by Grama's granddaughter — July 17, 2012 @ 12:42 pm

  156. Karen,

    I am on some off time right now -thus how I can respond so quickly (in case you might wonder); Karen, I didn’t clue in that your loss is so recent – only a week ago. My thoughts – again – are with you. I completely get alot of your comments; first off, I don’t pretend to know your thoughts as they say each person’s grief can be so unique – even over the same person, two people can be completely different.

    I since the time Mom has passed – just over two months – have experienced maybe some of what you have (so you don’t have to feel isolated); I Was very close to Mom and Dad, and I am very grateful for my experience/time with them. But losing Mom is so different than I probably ever imagined.

    I have tried to cope through: seeing a minister my parents both knew to some degree; I’m going to a support group through local hospice (which I found about only because Mom passed suddenly – victim services they call it up here; the lady came to moms house that night and I had a bunch of brochures and this was recommended).

    One neighbour a few days after mom passed, saw how much of an emotional wreck I was, and invited me over impromptu for dinner; that neighbour was a god send. Another did the same thing another night. I was so grateful – they are true friends. The first neighgor shared stories that made me smile about how she would run into mother when mom was walking our little dog (my dog, but her and dad took care of it too – and it was /is their friend too).

    I have been in a store that mom used to go to, and stopped at an aisle, spot on shelf where she would buy some certain item, and I break down or almost do. I have been parked in my car at the same mentioned store and break into tears.. It has become “better” in that I don’t do this quite the same. But there are so many things that you mention – only child closest to parents geographically – that ring true to me.

    Just do your best; make sure you seek out support for you …and I mean for you….. I wish I had done a few other things maybe for mom and me independent of each other after Dad passed…. but there was literally less than 2 mths between their deaths. So I try not to beat myself up too much. Just do as much as you can for you, and solicit support from community resources, friends etc as much as possible. Realize that there are people who won’t “get it”, and be ever so grateful to those who do get it.

    All the best to you. My thoughts are with you.

    M

    Comment by M — July 17, 2012 @ 1:07 pm

  157. My Mama passed away Monday morning at 6:55AM. Previously I posted that Mama did not want her kiddos to know, nor to be with her as she lay diing. Apparently that was not true. My sister did not clearly convey exactly what Mama’s wishes were.

    3 days after my husband and I returned home from visiting my Mama in her home, where her sister was helping her out, and Hospice personnel were visiting, Mama ended up in the hospital with severe dehydration and a very painfuli UTI that had a couple of very bad bacteria in it that was causing Mama’s skin to burn from her urine.

    Apparently this type of UTI or the fact that Mama didn’t have, much of an immune system any longer due to the AngioSarcoma that literally invaded and took over the inside of her body.

    After 3 days in the hospital Mama was moved to a Nursing Home. One that also does rehab. after her cancer removal surgery which included removing her rectum and part of her lower bowel and needing a stoma for a colostomy bag, that lead to blood clots cutting off all circulation in her left leg and caused her to have to have that leg amputated off above the knee. My Mama was 72 years young at that time. (Mama was in this Nursing Rehab facility last year and requested to be sent back there, because she really like the people there.)

    Mama was informed by the doctors that they believe there was a minute part of the AngioSarcoma that was not removed, that she may need to do some chemo. That was mentioned just before the removal of her leg. Nothing else was mentioned after that.

    Mama went through rehab, and finish mid November and got to return to her home. She was doing really well, had a scan for cancer follow up to see if it had grown or spread. Docs come back and say all looks great, no sign of cancer. What I did not know at the time was they did not use contrast, which for is very important to use for the cancer to show up, if it is small. They could not use the contrast due to Mama’s kidney problems. It could have thrown her into kidney failure.

    Because of the good news about docs seeing no cancer, she could wait at least 3 months before the next scan. She went for her next scan around March and, again it. Came back clear, and again they could not use the contrast. Mama started having severe pains. And not feeling well, constantly having UTI’s, partly due to her having to have a urinary cath. The reason for the cath was that the cancer was right near her bladder, and when the doc cut the cancer out he also snip nerves that the bladder needs for a person to have control over when they wish to urinate, or not to. Mama had no bladder control, thus the cath.

    With Mama having so many infections and an extreme amount of pain, the doc took out Mama’s last scan and, looked it over, and over like with a fine tooth comb, to see if he could find any thing. Sure enough, he says get Mama back in for another scan, this time the doc made sure in advance that her kidneys would be healthy enough for contrast to be used.

    They came back on May1st saying Mama has a tennis ball size tumor growing next to her kidney… Mama was given a choice right then to either do chemo or Paliative care. Mama chose chemo. A few days later the doc calls and says Mama cannot do chemo, her body is not strong enough or is her immune system strong enough to handle it, chemo would definitely kill her. So he sends her home for Paliative care and Hospice did home visits.

    The 26th of June was when she went into the hospital for the dehydration and the UTI. During the hospital stay they did a scan to see how much the cancer may have grown. By this time the cancer was invading all inside of her, under her ribs around the spinal column, and exiting her body through the only opening below. The 29th of June Mama entered the Nursing facility. On Tuesday the 3rd of July I flew 2000 miles to be with her (I do not work), not knowing exactly how long she had left. My only brother (younger than I) flew over on the 4th. My younger sister just had low back surgery on the 28th, so she’d ride up with her hubby on the days he worked I the area. My baby sister and her hubby drove over on the 6th. On Monday the 9th all 4 of Mama’s kiddos were together visiting with her. That was a really good day for Mama.

    My baby sister returned home that day, the 9th, my younger sister came up again on the 11th, while my brother and I were still there. My younger sister returned home the 11th, my brother returned home Thursday the 12th.

    I, the oldest, was now alone visiting with Mama daily for as little a 4 1/2 hours one day to 12+ hours other days, and some days visiting 2-4hours, leaving for 1 1/2 – 2 hours and coming back for a couple hours and leaving again for a couple hours and return for a third time that day, for a couple hours.

    Thursday the 12th Mama was alert and communicative for a good 1 1/2 hours,she even asked about all of us kiddos, each by name. She ate and drank a little for me. Mama slept off and on later on and would chuck or say things. She must have been either remembering, dreaming or communication with…???

    Friday the 13th Mama was trying to get out of bed, and between a tech and myself we had to try to keep Mama from falling. She only has the one leg, and thought she had two. Because she seemed really agitated and in some pain, she was given meds for anxiety, pain, and an antihistamine for itching (due to the pain med she was on). She fell fast asleep. Infact she slept the rest of the day. At one point this day her temp went up to 99.1* from 97.5* (her norm) the day before.

    Saturday the 14th Mama was in quit a bit of pain and discomfort. When the nurse tried to give her, her meds she would spit them out. The nurse finally was able to administer her meds mixed in pudding. Mama has done very little physical moving around this day. Her speech was extremely slurred, and her jaws seemed somewhat stiff. She only ate a bite or two of food and a sip or two of fluid during the morning hours. In the evening, more fights with nurses trying to administer meds. But, Mama allowed me to administer them to her without a fuss with the nurse looking on. Mama stayed on her left side now for over 30 hours, I couldn’t get her to let me help her turn to her right for a while. Over all not a great day for Mama.

    Sunday the 15th Mama has refused any and all meds. She has been extremely restless, agitated and in allot of pain. She even cried out to let her go home to live with Jesus. She calls my name and says let me go. And, she asks, calling my name, why won’t He just take me? My only answer was,”I know that Jesus hasn’t taken you home yet because you still have a purpose, and when that purpose is fulfilled, He will take you home. She seemed to have a peace about that answer. She smiled, and I felt maybe she knew something I didn’t. I prayed with her, “Lord, in Your timing Mama is ready to go home.” she would say yes Lord, I want to come home please. No more, no more pain, please. She also, tried crawling out of bed. When I saw her leaning over the bed with one hand on the floor, I’d ask, Mama whatcha doing? She say, I’m looking for…….(blank, she couldn’t finish her sentence) when I ran to KFC to get her favorite mashed tators n gravy, which took all of 15-20 minutes. I get back and find out Mama crawled out of bed and into the hall. Oh goodness. Finally, meds get changed from pill to liquid. The first administered liquid pain med, Mama took a sip of water swished it around in her mouth, pulled the trash can over and spit it out. Thankfully the liquid penetrates quickly, so she couldn’t spit it all out. Nw, for the first time today, she is actually resting some. It is about 12pm now. Her vital are normal. She rest a little, then jumps up to her hands and looks around. I reassure her I am still there, that she is not alone. She settles back down. She drank 1/2 her milk(2oz), a big bite a scrambled eggs and refused the KFC. It is now 1:05pm, I pray she has a better afternoon.

    Around 3pm, extreme restlessness was driving Mama to move this way, that way and nothing helped an antihistamine was administered. Around 7pm I noticed something that I thought was mottling going on in her left stump, and her right big toenail was a pale light blue. A little after 7pm, because she wasn’t sleeping really restful, I took out my iPad and sat it on a chair in front of me so that she could see it. I played solitaire for a couple hours. She watched off and on as i played. It helped to keep her mind busy when not sleeping, so that she prayerfully would not become restless or agitated. It is now around 9pm and Mama has been resting for a few hours, and actually sleeping some. Not real restful, but no real agitation either. Now around 10pm there is nothing that looks like mottling in her left stump, and her right big toe nail is now pink again.

    A little after 10pm I asked Mama if she thought it would be okay for me to go to my hotel which is only 1 mile away, to get some sleep. She just stared at me. Then, I said Mama if you don’t want me to go, I won’t, I will sleep in the other bed here in your room with you. Now, she has done very little movement since about 6pm. Her eyes and her head were moving. She reach her right hand (which was covered by her sheet) over and placed it on my right forearm and looked at me. I said Mama, I am staying right here with you. You will never be alone. Mind you, at this time I had no idea that she would be dead in just under 9 hours. She watched me set up the bed and crawl into it. I kept her cd music playing quietly (very calming music), and kept her tv on, on mute as a back ground light. For the next 3 hours I slept fairly well, when hearing a few rustling from Mama, I would say Mama I am still here, you are never alone. She’d settle back down.

    Around 2:20am she became very figity. I called the nurse for meds. Thankfully Mama took without any problems. I stayed up with her from that moment on, holding her hand, caressing her, talking with her(I’d let her know she will never be alone, that I believe Jesus is coming for her, and when He does, it’s ok to go to Him. You’ve raised your 4 children well, and we will be just fine. Your GrandBabies and Great GrandBabies will remember you warmly), praying for her out loud (asking, besieching our Lord to please be finished needing her, and take her home, run to Jesus Mama, you can run now you have two legs), and singing to her praise and worship songs.around 4am I had the nurse take her vitals. Mama was sweating, cold, clammy. Her vitals are at this time are lowering considerably. Around 5:30am Mama’s eyes became fixed, her extremeties became cyanotic, no body discoloration other than pale. Her breathing was hard for her but, she was not in distress, so an oxygen mask was placed, and pain meds administered. She swallowed the liquid med. she stopped blinking. The around 6:50am her breathing was not hard, but breaths became fewer and fewer. A small smile came upon her face, as her breaths were longer between each. I called the nurse and told them she running home to Jesus. When they started to take her vitals I saw her draw her last breath. I said I believe she is no longer breathing. They tried to find a pulse, listen for a heart beat, nothing. I asked if they minded if I took a listen. Nothing. Praise Jesus, she has no more pain. She is at peace.

    Comment by MrsT — July 18, 2012 @ 5:50 am

  158. I am sitting here after reading the information above and peoples experiences and although we have been told our mum (80) is in the final stages of Alzheimers and is dying I am not willing to accept it. Mum was poorly several months ago and we were told she may not live but she rallied round and only three weeks ago when I was last able to visit her she was laughing, I do not know what about but we laughed with her and she seemed happy. She does not know who we are and is no longer able to have a conversation and what she does say does not make sense and she can no longer walk. I cannot believe though that in three weeks she has deteriorated so much. I just do not understand, I am cross that the doctor at the hospital have told us that she is dying and my sisters decided to take her back to the nursing home where she is comfortable, its alzheimers not cancer or a terminal illness. Surely they should have kept mum in hospital and be peg feeding my mum if she can no longer eat and have a saline drip for fluids. I know the nursing home have said they do not want to be in the position of trying to feed mum and her choking as they have had to use suction on her lately several times. I need to know all that is possible is being done for her and again do not understand why people are giving up on her. Is it because she is 80 and regarded as old? Im so distressed with it all.

    Comment by Lorraine Eccles — July 23, 2012 @ 7:24 pm

  159. Lorraine,

    I don’t know what country you are in – Canada? USA? – or if you want to say; I know in Canada – at least in the province I am in, I begin to wonder if there is an “unofficial” agism in place; I say this, because I found out last fall when my father was still relatively ok, but had been diagnosed with cancer, that once a patient is “stable” they will push the patient to a care facility or home, or they will start charging a considerably large per day rate. They were doing this with another gentleman in my dad’s four bed room.

    I am still angry a bit, because I lost some confidence in the system with Dad in the hospital. I don’t know what to say, and sometimes when there are multiple family members involved, it might not be the best scenario as if there are differing opinions on care, then unfortunately the majority might think they have the right to do what they want (for your mom). My thoughts are with you. I would suggest trying to look into what to expect as someone with alzheimers goes downhill.

    My dad died of terminal cancer, but in one month, he was on oxygen, then off I V, and then slowly but also rapidly deteriorated. A bunch of his vitals went poor and we at least were told near the end that his end was near, and got up there and saw him pass. I was in denial that some alternate treatments might do more than they did – and that’s a whole other ball of wax as the medical people have no interest in talking about naturopaths. I am not a doctor, but I do believe the treatment was helping my dad.

    As we get older, I think sometimes the system will decide age is against the person. Do some searches on even in the USA with private medical, they debate about spending the money on a hip replacement for an 80 year old lady (I rmember reading that at one point). My prayers are with you.

    Comment by M — July 23, 2012 @ 9:33 pm

  160. I thank you for your reply. I live in England and I have become despondent with our National Health Service of late. It seems there is a great lack of respect for our elderly in ours hospitals and I agree that the system surely does decide that age is against someone. I, unlike my sisters, am not ready to give up on mum and feel that life, no matter at what cost, is worth saving. I do not live near my mum and work long hours but my three sisters all live close by and can visit mum at any time in the nursing home, they all seem to have decided that mum is not to have any intervention of any kind and have told me that “things are in place” as she deteriorates. I am angry with them for just accepting the situation. I want to fight for her at all costs as I believe there is hope for her. If we give up on her then we are failing her surely……..
    I am saddened to hear about your father and my heartfelt prayers are with you also.

    Comment by Anonymous — July 24, 2012 @ 3:45 am

  161. I have spent the last 4 hrs going over every1′s comments and stories and my thoughts are with every1 that has had to pass and leave loved ones behind and every1 that goes through it.
    I’am at this moment sitting at my mum’s bedside waiting on her making that journey to the other side she has had a long 20+ yrs of battling all different Cancers we were told 9 days ago she had 2-3 weeks to live she requested she wanted to die at home as she is currently in hospital she was due to get home yesterday but on Thursday she took a turn for the worst and we received a phone call to go to the hospital when we arrived she had been sedated to calm her down she was seemingly anxious about getting home and it brought on a seizure me and my sister have been at her bedside since. Reading all comments I would say she has had all the things mentioned for the last journey yet she is still hanging on yesterday she was pumped full of drugs and anti sickness jags
    to help her sleep yet never went to sleep and started being sick which looked like blood as she hasn’t eating for weeks and came off the iv fluid 2 days ago it was the only thing it could be we got a nurse to tell us if it was and they said yeah it looked like it was old blood then used the name coffee grind or something like that am unsure to what this is and dont want to ask they had administrated a tube up the nose so she wasn’t physically being sick which didn’t work as it was coming thru the tube yet she was still vomiting also it seems to be a bit settled more as its coming thru tube only now and it still just looks like blood. I had left for home last nite purely to freshen up and see my kids and my sister had texted to say that my mum had just told her she was going in an hour asked where she was going and she replied she was going to die in an hour so I rushed back to the hospital cause they say the person knows themselves when its time so I didn’t want not to be with her I had spoke to her and she had said she was going to try and go as much as I dont want her to go I know she wld be better off as she wld not be suffering anymore and altho she had told me she was going to try she never u cld see her fighting it I thought she was maybe trying to hold off till my sister got here which she made it here this afternoon now that she has left again I am kinda hoping she’s at some kind of piece now but am not sure I just dont want her to suffer anymore I dont know now if she is maybe looking at us for permission to go and how wld I put it across to her without sounding heartless

    Comment by pamela — July 28, 2012 @ 2:32 pm

  162. Dearest Pamela,

    It sounds like your Mum is ready for her last journey. Let her know that you understand she is ready to leave, and that you all will be ok. She did a great job while here and now her job is complete. Although you will miss her, she will continue to live on in your hearts and memories. That it is ok to leave now. Let her know you love her, but don’t wish for her to go on suffering.

    She will understand. You are in my prayers. Bless you. MrsT

    Comment by MrsT — July 28, 2012 @ 3:23 pm

  163. Oh if only leaving our earthly bodies was not so difficult. Then “arriving” as in birth is a struggle as well . . . for the mother and for the baby. I do remember when my grandmother was passing on I held her hand and told her she was free to “let go” that her task on earth was complete. I assured her that my mother (her daughter) would be well and that Grandma could rest easy now. I left the room for just a short while and in that time Grandma passed away. This is not an easy journey … for those that are struggling to leave and those that are struggling to let go. Going through this long journey now with my husband of 50 years – cancer and dementia. These posts have been such a comfort and I have found such enlightenment here. Thank you all for sharing your very personal journey. Lovinging sent . . . Laurie in Ohio

    Comment by Anonymous — July 28, 2012 @ 5:33 pm

  164. Thank you Mrs T and Laurie
    i found it in me to tell my mum she was free to go whenever she thought she was ready and that we all would be fine as long as she wasn’t suffering anymore. I am scared to leave her as i dont want her to go through it on her own i want to be here with her but i am really struggling seeing her in so much pain and i cant do anything to help her. i didnt understand there was so much to dying until tonight when i found this blog and reading every1′s posts has made me understand a bit more now and i know what to look out for know where as b4 tonight i didnt know what to expect i am still trying to get it all together in ma head and i think its running overtime at the moment as i keep thinking i can see the blueness in her hands but not sure if its the way the light is shining or if my mind is just racing its hard .

    Comment by pamela — July 28, 2012 @ 7:02 pm

  165. My mother passed away yesterday after a long battle with cancer. I was by her side, holding her hand at the moment of death. Mum was semi unconscious for the past 4 days but two minutes before she died, she opened her eyes and looked at me, I tearfully told her that she needed to let go as I couldn’t bear the pain of watching her suffer with the pain she had clearly been in from being full of bone cancer. She looked at me and had a tear in one eye, it was so emotional for me, I said “mum, please let go, go and be with dad”, she closed her eyes and then unfortunately I had to watch an awful grimace which no one had told me about (this does not always occur I have found in reading on the web today). after the grimace it seemed like a huge breath in and that was it, my beautiful mum who I am already missing so much was gone.

    I love you mum, I miss you terribly and I wish you were still here but not in the pain you were in. I cared for my mum the past 2.5 years and the last four months in my home. I gave up my life for two and a half years but I would do it all again for her. It brought a previously difficult relationship into a very close relationship and to be there right till the end, holding her hand was the most precious thing I could do for my mum.

    Now I feel so distraught that she is not here, that I cannot just pop into the bedroom to see her. I am thinking about things I have to do and then think “I need to get someone to watch mum”, but mum is no longer here, I am not sure when I will feel normal again, I am crying all the time, it is all so raw.

    Reading these stories above make me realise I am not the only one, of course you feel like you are the only one with this pain but it is happening to people every second of every minute somewhere in the world.

    Thank you for sharing your stories.

    Lee

    Comment by Lee — August 7, 2012 @ 8:06 am

  166. So sorry for your loss Lee. My father passed away 6 1/2 months ago and I cannot say that it gets easier. You will miss her forever, but that is okay. She will not want you to be sad, so eventually you will move on but for me the pain is always there. Take care of yourself and give yourself time to grieve. Take comfort in the fact that your mum is now with your dad and they will be watching over you together.

    Andrea

    Comment by Andrea — August 7, 2012 @ 8:27 pm

  167. Hi I am going to be going through this with my dad. He has been on dialysis for almost 8 years. He is a type two diabetic and he has a pacemaker and a weak heart. I dont know how he survived thisnlong. My stepmother died May 26th of 2012 and then he went back into the hospital May 30th. He went into the hospital in Feburary and was in and out from the nursing home for rehab. Then his hemogloban was low and he had to go back to the hospital again. So they found ulcers that werw bleeding . Then he got better. Went back to the nursing home for rehab and kept going to dialysis. Then it was coming up to his discharge date . We tried to get him to stay in there because uis wife was not home she was in a different nursing home. With.dementia and althimers and parkingsons. Anyways his bloo dpressure started to drop after he would have his dialysis and get really low. But we did not know. He would not get yp and do things for himself he made ke come an ddo them begging me to come over just to get a bite to eat out of the fridge for him. He also never followed the diet he was suppos eto. He also says he will never die. Or get so sick that he wil die. He went to the hospital May 30 th because he was weak an dcould jot get out of the chair. He was also having problems breathing. We called 911 and he went in after about an hour or so he was getting aurine test and he became non responsive and stopped breathing an dflatlined for six minutes. It took them quite awhile to get him back when they did he had a tubenin hi sthroat for

    Comment by Anonymous — August 7, 2012 @ 8:39 pm

  168. He was in ther efor a full month. Then they moced him to a rehab hospital to get.him off of the vent he was doing good then hi sblood pressure started to drop. Well they put a traech in also. Eveytime he does dialysis his bp drops he got as loq as 70/30. They have him on dopamine drip and he was on it when it got that low. He ha sto b eon full vent when on the drip. So he is still breathing. But the vent is up to 80% it was 90% but they turned it down some. He cant handle it lower. I just know when he goes its going to be really hard. The doctor said there i snot a chance he weened him off the drip for a fewndays and then took him off and his blood pressure dropped so low they had to put him on it that same night. So his body i sdieing he can barely talk. He say she is not dieing but he is. We plan on doing end of life this thursday. How do you deal with a situation like that. The doctor said he had a chance last week and since his o2 level went up and his bp is staying down. We are making the dreadful decision. He is swelling up because they cant take a lot of fluid off because of his bp while even on the meds. I just want praywr of comfot throughball of this and he goes easily and doea not strugglwe. Thank sfriends.

    Comment by Anonymous — August 7, 2012 @ 8:50 pm

  169. It’s a little hard to follow your post..I guess you’re typing fast and there are typos….. I don’t know what “we are going to do end of life” means; if it means taking him off drugs and that, I don’t know what to say; I would have medical opinions as to what is best. I know with my dad – whom died of cancer in Mar this year – he seemed to go down hill once off the IV. They said they needed to do that as it was what he would need to be used to (no IV) if going into a care home (whatever the right term of housing is called – care home/extended care). In the facility he would go to, they wouldn’t have been able to do IV apparently.

    I’m still battling with what else if anything we could have done for him. Feb 14 he was home…knowing he was “terminal” but doing OK…then he couldn’t breath one night very well….911 got him to hospital and than a month later Mar 24 approx (I’m blocking the date deliberately as I don’t want too much info – so deliberately non specifc) he passed.

    All I can say is get good advice, and try. I have some comfort in that I’m glad we tried the naturopath; had we continued, then maybe it may have made a difference.

    God bless you. It is not a happy time, and I feel for you.

    Comment by M — August 7, 2012 @ 9:08 pm

  170. Although this passage was very resourceful, i still have many questions. Before my grandfather died, a week before it was as if everything was ok and things started looking good for him. Everyone was happy and we figured things would be fine; This wasn’t the case. Again this happened with one of my friends relatives and even now in a book I’m reading called “The Good Earth”. I wanted to know if there is a certain name for this or if it just natural in ever death. Thank you!

    Comment by Nathalie — August 15, 2012 @ 2:35 pm

  171. Hello Nathalie – Sorry for your loss. I have read that this does happen (not with every passing) but it looks like the person is actually recovering as they are alert and eating and the family think they are going to be fine but then they pass away. It is a cruel thing to happen, but it does. Not sure what the word is for it though. Stay strong.

    Comment by Andrea — August 15, 2012 @ 8:56 pm

  172. This site is a wonderful resource of information and consolation. Thank you very much.

    Comment by Jack — August 19, 2012 @ 2:21 am

  173. My beloved sister passed away last year. She was 64 and I had just turned 59. I had read everything I could about death and dying and although she was in a hospital, the staff allowed me to lie down next to her and hold her for hours. Although she was unresponsive for two days it seemed like an instinctual thing for me to do, I sang to her and put hand lotion on her hands and face. My other siblings couldn’t understand how I could do these things. They kept vigil in their own ways. THERE IS NO RIGHT OR WRONG THING! I felt that if I were dying, it might be comforting to be held so that’s what I did. I was not with my sister at the moment of death but her daughter was. It was peaceful. This site is invaluable. My sister-in-law is now very close to death and I’m reminding myself that we are not alone. Thank you for this site.
    Terry

    Comment by Anonymous — August 21, 2012 @ 10:15 am

  174. I understand that the last of our senses to leave us is hearing and touch. I sat with my grandmother a few years ago and did the same thing – held her hands, whispered words of love and telling her that she was free to leave when she was ready – her task was complete. I am walking a journey now with my husband of 50 years – cancer and dementia. Daily and moment by moment I must remind myself that this is all we have – this very moment. I ask myself how I would like to be comforted at the hour of my death – or the days and hours leading to that moment – having someone gently holding my hand . . . we should all have such a loving and gentle death. Thank you Terry for sharing your experience. What blessing this site has been reading the experiences of those that are seeking answers and those sharing their most profound life and death experiences. Is there anything more personal than the birth of a new being or the departure of a long and well-loved one. Thank you, all. Laurie

    Comment by Anonymous — August 21, 2012 @ 11:30 am

  175. My fiance’s father, age 82, passed away this morning after being diagnosed with stomach cancer only three weeks ago. Five weeks ago, he was seemingly fit and normal, still doing twice-daily long walks, cooking and working in the garden. About two months ago, I noticed he had suddenly lost all energy, took long naps in a chair and became irritable. To me, he looked like someone who was suffering from something very serious, perhaps cancer. I’m a two-time survivor of cancer myself, so I know what it does. But I was shocked when the general doctor he visited said there was nothing wrong! I told my fiance this doctor didn’t check very closely, that there was something very wrong with her dad. For several days after, he rebounded and became his former active self. Then a little over three weeks ago he was taken to emergency after complaining of severe abdominal pains. Tests revealed he had stomach cancer that had spread to his spine and other organs, and he was stage 4 terminal. He was hospitalized for a few days, stabilized and came home, then after a few days he started vomiting severely. He returned to the hospital for a few days and then for the past 12 days he has been in hospice care. He stopped eating soft foods a week ago because he vomited everything, but continued sipping water. However, about five days ago, he could no longer sip water, as he vomited even that. When this happened, I knew his time was near. Three days ago, he suddenly opened his eyes and looked around the room. When he saw me, he gave me a faint smile, then raised his arm slightly and gave a thumbs up, pointed at me and then pointed at his heart. That was the last time he had the strength to move his limbs. He was aware of all of his visitors up till two days ago, although he was no longer talking, but he would keep his eyes closed and gently nod his head when asked questions. He passed gently at 7 a.m. today. He was very kind to me and I will miss him very much.

    Comment by Mike — August 27, 2012 @ 6:46 pm

  176. Mike, my thoughts are with you and of course your fiance. My fathers cancer was also missed by the doctors until it was too late. I am still very bitter about his treatment , I know that doesn’t solve anything but it still hurts <3.
    It sounds like your father-in-law passed peacefully, that is a blessing,he was lucky in that respect xxx

    Comment by Eddieslas — August 28, 2012 @ 6:42 pm

  177. I had to write in when I saw this site. I wish I had seen it before although nothing prepares you really. My Dad had been fighting cancer for the last 5 years. He was what is called a “responder” and reacted very well to chemo and radiotherapy treatment for what started as bladder cancer before moving into the bones. That was until he contracted Swine flu and Pneumonia while in the middle of chemo. But, he got through it while younger and fitter people were dying; even the Dr called him a miracle. That was Jan 2011. It took him a while to get over that, but he did. However I believe in that time, the cancer took hold. The chemo stopped working and in April 2012 Dad was admitted to Countess Mountbatten Hospice. The care and the staff were fantastic. Their upbeat attitude suited my Dad who never ever complained about anything. I lived abroad and whenever I spoke to him it was hard to believe anything was wrong. Dad wanted to come home and that is what he did. I was due to fly back to see him on Wed 13th June; I had spoken to him on the phone the previous Tues and he was still so optimistic. The cancer was pressing on a nerve in his neck and in turn he had lost the feeling in his hands so it was difficult for him to handle the phone so I would speak to him and Mum on the loudspeaker of the phone, then eventually just Mum as Dad would be sleeping a lot. He had been confined to bed and a chair since being in the Hospice and he was determined to get mobile again. A physio even came to the house and he managed to get to sit on the edge of the bed. Whether it was the effort of doing that or the realization that he would not be able to do it, he then went down hill fast. I was called on Sunday evening and told to get back on the first flight. I arrived on Monday afternoon and he had not been conscious all day. He had not had eaten for the last 2-3 days. When I got there, I started speaking to him and he struggled to open his eyes and tried to talk or to smile. He was like that for a couple of minutes and then he closed his eyes and never opened them again. He had a syringe drive for the morphine as he could not swallow. We would give him water on small sponges on sticks.
    Carers would come in twice a day and the palitive care nurses. We convinced my Mum to accept the help of a Marie Curie nurse as Mum had been sleeping on the sofa ever since my Dad had been at home and was exhausted. They did not come in every night but twice a week just so Mum was able to have some sleep. One night the Marie Curie nurse was there was the night after I arrived and I too could not go upstairs to sleep and so stayed nearby. She would speak to My Dad in low, soft voice whenever she needed to check him or give him water. These people are angels. My Dad had the “Death Rattle” which is the collection of mucous in the throat as they can’t swallow. The nurses told us that this is more distressing for us than them but I did find it awful. On Wednesday Dad was still with us but his breathing was more shallow. It was horrible as you just seemed to be sitting around waiting for him to die. The nurses told us that the last sense is the hearing so it is thought that they can hear you. All the family were coming round and we would sit round his bed looking through old photos, laughing, talking to him. That evening his breathing seemed to slightly change. An hour later, while all of us were there, he suddenly went quiet. His breathing suddenly turned to a jerky movement. In a moment of panic we called the 24hr nursing team who told us that this was normal and to call back in 5 minutes if we needed them to come out. They obviously knew this was the end. Dad took one long breath and then he was gone. My first feeling was in some way of relief that Dad was now not in any pain or discomfort. The person laying there had not been my Dad but just his vessel. It still all feels very surreal, like he has gone away and will come back as if he has been away on holiday. Living abroad, I don;t really have anyone to talk to about it so I apologize that this has been a long post but feel it has been very cathartic.

    Comment by Tania — August 31, 2012 @ 6:48 pm

  178. Tania, I am so glad you shared. I know the jerky movement you are talking about. My Mama had similar breathing towards the very end. Though I didn’t know she was that close to her end here.
    I, too am very glad this sight is here for those of us interested in knowing more about the dying process. It helps so much to read others experiences. It helps those of us watching our loved-ones in the dying process know, that we are not alone.
    It’s been less than 7 weeks since my Mama’s passing. I still want to just pick up the phone and call her, or expect her to call me. My siblings and our families will be Celebrating my Mama’s life in 8 days. I wish, we could have done this much sooner. I feel like waiting like this has done nothing but draw our the feeling of non-closure. I am excited to see family, but not the reason why, we will be together.
    Some believe that when a person is cremated, that that gives you time to plan to Celebrate the passing persons life, that the time will also give one the opportunity to grieve, and cry before we all get together. To get it out of your system, to get your closure over with. I do not believe that is the case. I believe it prolongs the closure.
    I am sorry Tania. I got off subject. Forgive me please. This is still very raw for me.
    Blessings to you.
    MrsT

    Comment by MrsT — August 31, 2012 @ 8:33 pm

  179. Tania,

    When I read your post, it brought me to tears at the end. I have replied to a few people on here before. Your story ( not to minimize its impact on you) could have been my dad’s story – so upbeat, then downhill; the one thing was he refused to go to hospice; he felt it was a place to go and die. I wish now, he had gone, as the care in the regular hospital left something to be desired; he was shunted around room to room it seemed. In the end, we were left in limbo as to what to expect etc; this was in March of 2012.

    I don’t know where you are located, but here in Canada, I found the local hospice was very helpful with a grief support group. I wish I had found it sooner – found it in May.

    I think I can relate to what you are saying about (from memory of what you said) thinking it’s not real etc. My thoughts are with you. I hope you can find some support wherever you are (you said you are overseas I believe, and I don’t know where your dad was living) but I know locally I would recommend our local hospice support group for support to those who have gone through losing someone, and is maybe finding it a really tough time.

    I have lost both my parents this year, and the hospice here was a blessing and continues to be.

    My thoughts are with you.

    M

    Comment by M — August 31, 2012 @ 9:39 pm

  180. My mum passed on the 23rd of August and Thanks to every1′s comments here i knew what to expect and the day she went i was getting ready to go home then i looked at my mum a she lay there it was 2 o’clock in the afternoon i had noticed that her chest had stopped moving and her stomach muscles had took over her breathing so i phoned home and told them i would nt be home as i didnt want to leave my mum plus my stepdad would not have coped with what happened on his own at 3.20 there was a gargling sound i didnt put it down to it being the rattle a she had been doing it for a few days before at 3.50pm she was gargling again i phoned the nurse to come down and see if they could clear her throat now when i think of it i feel a it stupid as at 3.55pm she had passed as she going and gargling all this black/brown fluid was coming out her mouth then they 3 big breath’s and on the 3rd she was away so i phoned nurses back and told them they came straight down and got her cleaned up. That death rattle sound will stay with me forever

    Comment by pamela — September 18, 2012 @ 8:55 am

  181. This is so hard to write. My mom is “actively dying” according to Hospice. She has had a long struggle of strokes and seizures, which have already taken mom from us as she doesn’t know anyone. She is in the unresponsive sleep stage, with her feeling cold to the touch (face, hands and feet). She is resting comfortably and is peaceful, for which I am grateful. She hasn’t eaten in two weeks or more and no fluids in the last 3-4 days. Reading the info here has helped me know what to expect and I appreciate that. I talk to her and I’ve let her know that although we’ll miss her, we love her and want her to go when she’s ready. Thanks so much to everyone for sharing your stories. Peace to all.

    Comment by Beatrice — September 18, 2012 @ 11:11 pm

  182. The correct thing for me to say is so tough. I haven’t read my past posts before posting this so I apologize if I repeat, but having the right info on what to expect I’m sure makes a big difference.

    The information flow was very weak for my father, but then he chose not to go to hospice which was probably a bad decision – but it was the info we had to work with that made us make that decision.

    My thoughts are with you.

    Comment by Mark — September 19, 2012 @ 2:18 am

  183. I wrote yesterday about my mom’s long struggle with strokes, seizures, and dementia. The Hospice nurses were wonderful and I appreciated the info I obtained from reading stories on this site. A Hospice nurse told me this morning that we should call all relatives who wanted to say goodbye, she predicted less than 24 hours. Mom passed 8 hours later. It was peaceful and that was my prayer for her. She is at peace.

    Comment by Beatrice — September 20, 2012 @ 12:13 am

  184. Hello – I posted on here in April about my father who passed away from lung cancer in January this year. My husband and I are now waiting on news from California (we live in Western Australia) for the passing of my father-in-law. He was diagnosed with pancreatic cancer in February 2011 and was given 2 months to live last August. He has survived for 18 months since then, but the time has now come for his passing. It is so hard to lose 2 fathers in one year. It is even harder not being able to be with my family to support them in this hard time. We heard this morning that dad’s feet are cold and that they are swelling. He no longer has a feeding tube and cannot eat. The hospital has him on a morphine drip. We plan on booking our flights and flying out soon. Unfortunately we cannot make it before he passes but will be there for the family after. Thanks to everyone who posts on here. It does not ease the pain of losing a relative, but it does help to see that others are going through the same thing. Be kind to your family and friends for it is only when they are gone that we realise how precious they are to us. Thanks for reading. AW

    Comment by Andrea — September 24, 2012 @ 10:19 am

  185. On Physical Manifestations of Dying:
    I found this blog through the exact search that the blog author did. My father’s death was ‘good’ in some ways and not so ‘good’ in other ways. It would have been helpful for me to understand, at the time, what the sequence of events meant. As this blog has so clearly shown, no two deaths are ‘alike,’ but there were stages that appear to be nearly universal that would have helped me understand better what was going on, if I had been familiar with them.

    My father was 85 years old and had congestive heart failure and vascular dementia. The vascular dementia meant that he would obsess about certain thoughts, but overall, he was lucid enough to know that he couldn’t articulate his thoughts. This frustrated him and he became partially nonverbal over the last year or two of his life because of it. He was able to speak, it was just too articulate the thoughts in his head. His doctor told us that, given the extent of his illness, he was amazed that my father was still alive at age 80. My dad was a fighter. I expected him to live for at least ten more years, as did his assisted care giver.

    On Thursday, July 21, 2011, my father fell trying to get the bathroom. The paramedics weren’t even going to take him to the hospital, thinking he had not injured himself. However, both his caregiver and I were very concerned that my dad was saying he hurt. He was an old WWII vet who would NEVER admit he was in pain, so the fact that he was reluctantly saying his side hurt, made me insist upon the medics taking him to the hospital.

    LESSON ONE: Always listen to what your patient is telling you. It turned out that my father had fractured his ribs, which, needless to say, required medical attention.

    Once at the hospital, I noticed cyanosis — blue-ing of his mouth, nails, etc. I was not surprised or unduly worried, knowing this was likely a response to the shock of the fracture. The emergency doctor wasn’t concerned with that either, for presumably the same reason. We both acknowledged that it appeared my father was going into congestive heart failure, although I don’t think either of us thought that he would not come out of it.

    Once my father had been diagnosed, treated (as well as you can treat a fractured rib), and put on a pain killer drip that knocked him out, I left the hospital, as they were simply waiting for a bed for him. I had been explicitly told that he would not be released that evening (He had been in ER for about 12 hours at that point). About an hour after I got home, later, the hospital ‘social worker’ called me — at midnight! — to ‘tell’ me they were moving my father to a nursing home instead of admitting him. I think she expected that I would not know my rights toward my father; however, after having to have moved his wife from an abusive facility with the help of an elder advocate, I knew that the hospital could not move my father without my permission.

    LESSON TWO: Know your rights! The ‘social worker’ was assuming that I was unaware that I could say no, and assuming, also, that I would roll over me and give implicit permission to move my father. I was horrified. I told the social worker, no, absolutely not, he was not to be moved under any circumstances, except to a hospital bed. I said several times that I was denying my approval to move him. The ‘social worker’ became very frustrated with me, and even threatened me, telling me that there was no medical reason for my father to be checked in, and that he could likely be billed for the entire cost hospital stay himself, which, of course, was patently ridiculous.

    LESSON THREE: While most hospital staff are wonderful, do not think, for a minute, that they will not try to trick you into agreeing to something not in the patient’s best interest, or that they will not try ‘soft threats’ to gain your compliance. In retrospect, I wonder if my father would have gotten better treatment in a nursing home, but there was no way I was going to let them move him while he was in such terrible pain from the rib fractures. I was astounded they would even try to force me to do so.

    Friday, July 22, my father was doing great. He was lucid, he was eating (his appetite was not great, but he was eating), his color was returning, and the young woman ER doctor was absolutely confident that he was going to pull through this. We agreed that my father would remain in the hospital for observation for another day or so, after which he would be moved to a nursing home for recuperation of his ribs, and then he’d be moved back to his assisted living. They were going to start hospice for him, but this wonderful young doctor kept saying, “you’re dad’s a fighter. I bet he ‘graduates’ from hospice!’ I was at the hospitable all day and finally left, thinking everything was okay late Friday afternoon. Oddly, a colleague of mine whose father had died just a couple of years earlier in similar circumstances, urged me to go back and check on my dad that night. She seemed so concerned about it that I almost got dressed to drive back downtown to the hospital, but ended up thinking, no I’ll see him in the morning.

    LESSON FOUR: Trust your instincts! I would never speak to my father again because I failed to listen to my instincts to return to the hospital just to check on my dad.

    When I got the hospital the morning of Saturday, July 23, my father appeared … unconscious. The nurses assured me that he was just sleeping, and that earlier that morning he had eaten breakfast and even said he did not want apple juice, he wanted orange juice. Then he ‘fell asleep.’ Check back to LESSON FOUR. My father did not appear to be sleeping to me. He seemed unconscious. I should have acted on this instinct much earlier than I did. Meanwhile, the nurse informed me that they had been forced to restrain my father the evening before, because he lost track of where he was and began fighting to get out, pulling tubes from his body and even striking a nurse, trying to get out of the hospital bed. I have no idea why no one called and told me this.

    LESSON FIVE: I now know, anecdotally, that this is a sign that the process of dying has begun. I’ve heard it from too many other people not to believe there is a connection. It’s almost as if there is an instinctive knowledge on the part of the patient that he or she is dying and an equally instinctive urge to unconsciously escape it. Again, I have no scientific proof of this, but I have talked to at least a half a dozen people whose elderly parent’s death began with exactly this kind of fight. Even in the sweetest, nicest people you can possibly imagine end up hitting nurses in their efforts to escape the restraints of the hospital bed.

    After sitting at my father’s bedside and listening to his labored breathing for several hours, I finally walked out and demanded that the nurse do something. I said he was not sleeping, that he appeared unconscious and that I needed someone to tell me exactly what was going on. Again, refer back to LESSON FOUR — I should have trusted my instincts. My father’s oxygen saturation levels had sunk so low, that I believe the emergency nurse they called in was frightened of losing him. There was a flurry of activity, and when the emergency nurse finally said, relieved, that the oxy sat levels were stabilizing, I literally moved the person out of my way to see what it was. It was 82. God knows how low it had sunk. The emergency nurse seemed agitated with the regular nurse and I overheard him telling the doctor, who had rushed over, as well, that ‘the daughter (me) had to point it out several times.’ Again, trust your instincts.

    Following this, the doctor took me aside and told me that my father was not going to recover, and that the best they could do was put him on an morphine drip once the family was all gathered to say their good-byes. So, the entire situation turned around completely in under 12 hours. My father went from alert and eating to unconscious. He would never regain consciousness.

    LESSON SIX: My father’s temperature spiked extremely high by Sunday/Monday, July 24/25 before it began going down. Again, I am told this is consistent with the dying process and usually occurs 2-3 days prior to death. This was true in my father’s case as well. My brother flew in from out of state on Sunday, July 24th. The hospital said that they would be arranging for a private room for my father. They never did.

    LESSON SIX: you must hold people to their promises. Although my father remained unconscious, my family wanted to talk privately to him in his final days. We were unable to do so, because he was sharing a room with a patient on the mend from surgery, who was walking about, having a lot of company, etc. My father’s dying process was witnessed from start to finish by a whole coterie of total strangers to him. My father was an intensely private man all his life. He would have been horrified to have known that the most intimate processes of his dying was a quasi-public spectacle.

    My father lingered until the morning of Tuesday, July 26. We were reassured repeatedly that hospital staff would know through changes in my father’s breathing, when it was time to notify the family to gather. Instead, I received a call Tuesday morning, as I was on my way into the hospital, that my father had just died. The nurse who was with my father when he died, was young and seemed fairly new at her job. She was very capable, but if she were not new, I don’t think she would have been as forthcoming as she was.

    Specifically, she said she walked in on my father’s agonal breaths that morning. My father died, while she held his hand amidst a blitz of activity as staff tried to sweep the other patient from the room so he was not there at the moment of death. There are many things I am grateful to this hospital for, but their lack of sensitivity towards a dying man and his family is not one of them. However, they did assure that my father was not in any pain for his final days. They were much attuned to changes in my father’s expression that might indicate he was suffering, even though he was not conscious.

    Comment by One Person's Story — September 26, 2012 @ 2:23 am

  186. Thank you for your extreme candidness. I’m speechless, other than it reminds me in a lot of ways of my father’s passing. I know my dad would probably say to me to try to carry on the best way I can, and not to dwell on this (speaking of my dad’s situation that is).

    As we go through life, we are confronted with so many things, and sometimes only having gone through it do you fully understand as you can draw on your experiences.

    I often want to go back to the hospital and talk to some of the nurses, thank them etc..I did do one brief visit – Dad died in Mar of 2012.

    There are times I am so sad, I miss him terribly. However, I would only have wanted him alive in good health (e.g. not lying like a vegetable).

    God Bless you Dad, and my thoughts are to the author here also. Thank you for sharing. I hope you find the right mix of outlets and channels to discuss with caring and understanding people what it is you are experiencing in the aftermath.

    Comment by M — September 26, 2012 @ 1:49 pm

  187. Thank you for your kind words. I am so sorry that you just went through this yourself. I am reminded me of what a good friend told me — that you know it’s going to be awful when your parent dies, but nothing in this world can prepare you for how horrible it actually is.

    As badly as I feel some things were handled, I’ve been told since that my father actually had a very ‘good’ death. He was alert, conscious, happy to see his family one day, then he just never really woke up after that. I’m told that we are also very fortunate that he departed this earth as rapidly as he did once he was put on the morphine drip. Clearly, even the hospital staff was taken aback by how quickly he died subsequent to getting the drip — they apparently thought they had ample time to move him to a private room and give us some alone time with him, and just as clearly they did not have the luxury of time.

    My father died within 24 hours of being placed on the morphine drip. I’ve since heard horror stories about eldery parents lingering for days or even weeks while being given only ‘comfort care’ and I’ve been told emphatically that no child should have to watch a parent go through that. So, we are grateful that my father was spared any of these very distressing side effects we’ve heard that other families suffered. I truly hope the same was true for your father.

    You know, just taking off like he did was so totally my dad’s personality! He was a never a person who wanted a big fuss made over him. So he pretty died the same way he had lived. I guess I just didn’t ever expect to miss him so much.

    Again, thank you for your kind words, and my thoughts are with you too. I know the situation must still be very raw for you — it was a year before I could even speak of my father without breaking down. I hope that you have family and friends who are there for you as well.

    Comment by One Person's Story — September 27, 2012 @ 5:42 am

  188. My husband died just over two months ago. He had untreatable cancer of the throat that began at the base of the tongue. He did not want to go into hospital or into a hospice, so we had hospice treatment at home. Everyone, even the doctors felt he had more time to live, but for a week he had been complaining of pain in his stomach. One night, trying to get up himself to go to the bathroom, he fell badly and cut his head which had to be stitched. Just after the doctor left, my husband asked for a bedpan and he passed a lot of blood. I phoned the hospice, but the doctoe on duty said that my husband was not hemorrhaging, that he had just left him after stitching his head and he was alright. I did not insist. The next day my husband was white, even his tongue was white, so I called an emergency ambulance but he died half an hour after arrival in the clinic. He was conscious until the last few minutes, and responding to the nurse, but suddenly there was one shudder and last breath and it was over. His eyes would not close for some time. I am left distraught that I did not do enough to insist that the doctor return, that if I had done so he might have had a transfusion and lived a few more months, that I failed him right at the end. And this traumatic end is terrible to remember and live with; together with the loss is a feeling of guilt. The professor over the hospice explained that all relatives of terminally ill cancer patients would like their family member to drift into a coma and die in their sleep, but the illness has a way of developing of its own. Sorry about this sad story. I wish I could be more comforting but I cannot.

    Comment by Anonymous — October 14, 2012 @ 6:22 am

  189. Dear “Anonymous” (from Oct 13): I am so sorry about what you went through. We can only – as a reader of your post – imagine from your description the exact surroundings and scenario that took place.I

    I Have replied on here to many posts. Yours is one of many that has made me sad and my heartfelt condolences goes out to. From what you describe, you did try to do everything. You called the doctor you said, and he brushed it off (for lack of a better term).

    We put our hope and confidence in the doctors and if they don’t carry through (right or wrong), that’s their decision. I have the same thoughts about a doctor not maybe doing enough or responding to do with a relative I lost in the last 6 mths.

    For any of us who have been thrust into dealing with a loved ones illness and resulting death or sudden death – where the death we feel could have possibly been prevented – it is a horrible situation to have thoughts afterwards of what we might orcould have done.

    From what I have read, I am confident you tried to do all you could. The sadness I think comes from losing the loved one, and you feeling that the doctor errored in not responding to your concern, and saying all was fine. My relatives death may have been somehow related to a heart/brain issue that was not detected properly or acted on when signs were there last year. I pushed and pushed for the doctor to do things and we seem to run into a constant “Don’t tell me how to do my job”. It’s almost like a pride /saving face type approach comes into play from some in the medical community, rather than listening to those who might know the patient just a little bit better.

    I don’t know what else to say, other than my thoughts and prayers are with you, and I hope you find comfort in my writing that I feel you did all you could – as it was up to the doctors to listen to you – and they didn’t feel there was urgency.

    I continue to work through grief. I have learned alot about it. The local hospice grief counsellor/group has been a god send. I still wish I could have my relative back and healthy, but knowing I can’t, the support has been helpful. My thoughts again are with you.

    Comment by M — October 14, 2012 @ 3:31 pm

  190. My father is in a long term care facility, he had a stroke 3 years ago when he was 84 and he has had many smaller ones since, I have watched him come back from his strokes as he is a man of strength his whole life so he would do the fight to come back as well as he could, he had hopes of tending a garden again, he would have dreams during his sleep and let us know he had just been on an amazing hunting and fishing trip and he would describe these trips in details, he was diagnosed with dementia and I believe this is the way his mind coped with all that he lost in having the strokes that he had. Yesterday the nurses contacted me and let me know that my Dad’s conditioned changed drastically and that he wasn’t responding to them and he had the shallow but labored breathing and that he was also having long periods in between his breaths, When I went to be by his side his breathing was exactely as they said, and he was not communicating and just sleeping deeply, they made him comfortable and started morphine in small doses for any pain he was having, we were offering thickend water but since he was in and out without being alert we began the swabs diped in water to make him more comfortable, his eyes wern’t closing completely so we placed drops in them for comfort, when his buddy :my husband walked in the room and spoke to Dad he perked up a litlle enough to manage the words:” where ” and then went back to sleeping when I left him last nite he was resting well….I called for a report this morning before I could get back to him and they have let me know that he is more alert today and they would be offering nectar water and keeping him comfortable until I could return, It was hard for he to leave last nite but I have a disability and could not stay :( They have told me that this process of death can be hours or days so we are supporting him and loving him, my Mom passed in 2006 and will be waiting for him with open arms…..

    Comment by Linda Hoyle — October 20, 2012 @ 2:50 pm

  191. To Anonymous on October 14: I am the poster who wrote above of the things that I learned with my father’s passing, and what I would have differently had I only known. Please know that you are not alone, feeling this agony of regret and helplessness. I believe it is more profound when the death is sudden, even if the patient is terminal already. A very good friend of mine sent me this quote from Augusten Burroughs, in the Wall Street Journal. It speaks so profoundly to my feelings that I still find it amazing, and would like to share it with you. Burroughs wrote:

    “A corollary to the idea that we must be happy and positive all the time is that we must all be “healed.” When I was 32, someone I loved died on a plastic-covered twin mattress at a Manhattan hospital. His death was not unexpected and I had prepared myself (for it) years in advance, as though studying for a degree. When he died, I was as stunned as if he had been killed by a grand piano falling off the top of a building. I was fully unprepared.

    I did not know what to do with my physical self. It took me a year to stop thinking, madly, I might somehow meet him in my sleep. Once I finally believed he was gone, I began the next stage: waiting. Waiting to heal. This lasted several years.”

    As you know, if you read my post above yours’, I experienced many of the same emotions you have — that I should have been more aggressive, that I should have challenged the hospital staff more, that if only I had spoken up, my father would have lived for a time longer. I was so troubled by the situation that I sought answers everywhere. I am not litigious; I was not wanting to file a lawsuit, there was just a fire in me to know why? Why did the situation change so suddenly? What could I have done differently?

    I want to share with you the most profound advice I received. I got the records from my father’s final hospital stay. The only clarity I received was the confirmation of my assumption that whatever happened on Saturday morning, July 23, meant that my father’s condition became terminal. It was all very vague about what exactly happened, though; clearly, the notes were complied with an eye to a possible lawsuit down the road. So, after checking out various other entities, I was advised to call the county coroner’s office. I wanted to hire a deputy coroner to read the records and tell me what happened. I was very clear that I was not looking to sue anyone, I just needed to know for myself what exactly happened to my father that morning.

    The Deputy Coroner seemed a genuinely caring person; he talked to me for nearly an hour, and convinced me that I wasn’t going to find anything new out by spending hundreds or even thousands of dollars to have a coroner read the notes. He told me something that I will never forget. He said that, in 28 years of service as a Deputy Coroner, he had learned that, once you reached a certain age, or a certain point in a terminal illness, and suffered any kind of medical crisis, the question of whether you lived or died depended entirely on the luck of the draw — the doctor that was rotating through when you came in. He said some doctors would fight with everything they had to save a patient, no matter how old or how ill, and other doctors would consider it a kindness to simply provide comfort to the patient as he or she died.

    He said it sounded like my dad’s first doctor was a fighter. She went off shift on Friday though, and the second doctor had a different view of how to treat these things. Further, the coronor said, either method was medically defensible. He said it was an uncomfortable thing for him to realize, but that he was sharing it with me so I understood the dynamics of what was going on more fully, and understood also how indifferent the bureaucracy was to any input from me agaisnt the decision of the attending physician. I am sharing this knowledge with you for the same reason.

    There is nothing you could have done to change the outcome. Your husband’s doctor had a particular mindset and that was the luck of the draw for your husband. And you were there for him at the end — even given the insular process of dying, what a comfort that knowledge must have been for your husband. I think you were very brave, and I wish you peace as time passes and the joyful memories begin to push through the sorrows of your husband’s death.

    Comment by One Person's Story — October 21, 2012 @ 5:30 am

  192. Thank you for sharing such an insightful journey with illness, dying, death and grief. I stuggle daily with my emotions and coping with the eventual death of my husband of 50 years. Three years ago he was diagnosed with stage IV metastatic prostate cancer. A year ago he was diagnosed with a fairly rare type of dementia – frontotemporal lobar dementia – which eventually will leave him mute. The man that he once was has slipped slowly away from me into a state where there is no rhyme or reason. I think I have a handle on “letting go” until morning comes and the demands of the day bring me back to reality. I know the outcome will be what it will be but meanwhile I question myself and am I doing the best I can to care for him – keeping him at home rather than a nursing home or mental care facility. Waiting. Waiting. Waiting for evening. Waiting for morning. Waiting for this horrid slow death. Wanting to stop crying, wanting to laugh again, wanting comfort for my lovely husband and always struggling with what is the right thing to do for him. I think I am prepared for death until the thought of having to take him to a nursing home or memory care overwhelms me – more tears. I realize I am totally unprepared to let him go and question as well what will I ever do with my physical self when my life’s companion is gone? mad thoughts swirl and will I ever heal? I am waiting now for him to awake to begin yet another day of caring for his body and what mind he has left . . . and now I am crying once again. This site has been a God-send of hope and comfort hearing and knowing that this struggle is universal and there is comfort in knowing that we are not alone – someone understands. Thank you all for sharing such personal journeys.

    Comment by Laurie — October 21, 2012 @ 10:38 am

  193. i just have this negative feeling of death around me. I think i am traumatised by my dear cousen’s death. He was diagnosed with a tumor in his stomach in june and an emergncy operation was done unfortunatly they did not remove all of it and sticked him up bad. He lost a lot of blood and developed internal bleeding. we took him 2 a different hospital he got blood and looked better. After a biopsy it was down hill. He would loose his mind at times and hav a blank look on his face. He was thin! D tumer was puting pressure on other organs and his ribs(right chest) were swolen. He was on ox2 one way. Nt just his waist but his wole abdominal should his pulse. He past away in september a day aftr he lookd better. At age 25. I felt it was nt d end. A month later my friends brother died aftr a bad fall at age 19.

    Comment by katia james — October 25, 2012 @ 1:41 pm

  194. sorry about the grammer errors!
    I saw my friends brother 2weeks before his death. He stopped speeking to me and greating me 2years ago. I was standing with my uncle when he came greeted me and my uncle than he apologised for mistaking my uncle for somebody else, than he asked permission to go!and apologised again. It was weird he seemed confussed. Aparently he became paranoid the next day and was taken to the hospital 2weeks later he tryed 2 escape and fell to his death. My cousen past away on the 16 sep. And he on 16 oct. The feeling of death glooming around me just wont go! Is this normal? Is it grieving? Mybi im just paranoid. My cousen had hope that he would survive. I just prayed for a miracle. Im sad courz its d fist time i loose a loved one and the pain he went through was realy sad.

    Comment by katia james — October 25, 2012 @ 2:53 pm

  195. im talking 2 much! Not just with my cousen but i have heard many people say a very sick person looked much better(2 the families relief)the day before their death (shock). “and we thought he/she was getting better” i hear that quite often.

    Comment by katia james — October 25, 2012 @ 3:00 pm

  196. Katia,

    You have experienced two losses in the last few weeks and, it sounds to me like you are grieving those losses. I believe it would be very beneficial for you to talk to someone. Maybe find a grief support group where you can share your losses, and your experiences.

    Grief left untreated sometimes can lead to depression. I pray you find peace.

    Bless you, MrsT

    Comment by MrsT — October 25, 2012 @ 6:51 pm

  197. Hi,
    Thank you for this blog. I am wondering how people deal with the death of a parent who has been abusive. My own Mom was and I was glad to not have to be there when she passed. Now we are responsible for my husband’s father who was also abusive to my husband and his Mother. It has caused a lot of problems for my husband who is now in counseling. The counselor finally let my husband (and me ) off the hook for feeling I had to keep going to visit him. Now he is beginning the dying process and it just so difficult, because if we say my husbands father in dying they assume we are losing someone we loved deeply when reallyit is just the end of a long burden and grief that my husband will never have the father he deserved to have. Anyone else?

    Comment by Becky — November 15, 2012 @ 8:37 pm

  198. My Mother was very abusive to me in my early childhood years to my very early twenties. I am now in my upper 50′s. I have found peace with our Father in Heaven. Jesus has taught me to forgive, and has taught me to hate the sin, NOT the sinner.

    I have been seeing a psychotherapist for over 25 years now. Through them, I have learned that there are reasons that a parent may be abusive. One is that that may have been how they were raised – which was the case of my Mother. Two is that they were not taught how to properly raise children, because they did not have a great role model.

    Becky, you and your husband need to know if you are alright with the passing of your parents and not saying goodbye. Or not talking to them about other things. If you are okay with that, then do not feel guilty for not being there. You need to do what is best for you, not for every one else.

    I personally, was there with my Mom by myself at the very end. I feel blessed that I was there for her and with her. I made my peace about my past, and I would NOT have been okay if Mom passed without me saying goodbye. I took care of myself.

    I don’t miss the abusive Mother I had, I do miss the wonderful woman I came to know as an adult and as a Christian.

    Blessings to you Becky and your husband. May you all do what you need to do, to take care of yourselves, and not be pressured to do otherwise.

    MrsT

    Comment by MrsT — November 16, 2012 @ 2:34 am

  199. Becky, If what you are asking is how to deal with expressions of sympathy, you could consider, “It is hard to lose a parent” or “It is hard to have lost a parent.” No need to elaborate. Your husband lost his father a long, long time ago — maybe even before he was born, and has been dealing with the grief of being an unfathered son for a long, long time. You don’t need to explain more.

    Comment by havealittletalk — November 17, 2012 @ 9:23 pm

  200. My father passed away at the age of 78 on December 17, 2011 after battling cancer for 25 years. I was very informed about the physical stages of the death process, however I was not prepared for the spiritual occurences that my father experienced along with me and others in my family. I would like to share a few of them because when I am missing my dad, I find great comfort remembering my experiences when he died because I know I will see him again.

    My dad died 2 months after beginning hospice care at home. On a Thursday evening we played cards and chatted. The next day we began giving him morphine and he died a week later. I remember going outside for a good cry and I somehow knew my dad could hear me and I said, “Dad I know you will visit me, but when you do please leave me a sign so I know it’s not my imagination.” All of a sudden the wind chimes started banging like someone was beating them together. I thought, wow that was strange. A few nights later my parent’s dog (their baby and extremely spoiled) began acting very anxious and cowering under the table. The hospice nurse mentioned that animals are very sensitive when someone is going to pass. I asked her if she had any other signs when a patient was going to pass and she said, “Don’t you hear the windchimes?” I never told anyone about the wind chime so I was speechless that my experience was just validated.

    That same evening my father woke up and he said, “Who keeps turning on those bright lights?” I told him the lights were not on and asked what he was seeing. He told me the lights were so bright and his mother was waiting for him, but he was scared. I told him I was going to take his hand and we would walk to the light together and when it was my time that he should wait for me there. He calmed down fairly quickly and we walked towards the light. He did not pass away that evening and the next morning he told me they had really good food where he was going….I still chuckle about that. It’s nice to know his heaven has really good food.

    My father was waiting for my son to come home from college and did not pass until he saw him. All the other grandchildren had been there, but my son was 9 hours away and finishing college finals. I told him grandpa would be upset if he didn’t take his finals and I was so happy my dad waited so he could say good bye. It was now a week after he needed morphine and other medications to keep him comfortable, he was mottling, but did not pass. I couldn’t figure out why he was hanging on and then I remembered he told my mom that he wanted to die at home with her and his 3 kids. The grandkids were there and I knew he wouldn’t let them see him die, so I sent the kids away and within 8 hours he went to heaven.

    The morning he passed, I cut his finger nails and combed his hair because my father never left the house looking unkept. I was sitting with him and talking to him. I got up to get a cup of coffee…the family room is only about 8 feet from the kitchen so I was gone less than 5 minutes. By the time I returned, my father looked 20 years younger, he did not have a wrinkle on his face, the age spot near his temple was gone, his mouth closed and he had a peaceful smile on his face. My daughter said, “Mom, did you see what happened?” Oh boy, I couldn’t miss it. Obviously I have no explanation and I have never heard of something like this happening, but I believe he was letting us know he was happy and at peace.

    There were many other physical and spiritual things that happened during his final week that I still go through in my mind, but I learned that when a loved one is approaching the end of life that it is very important to pay attention not only to the pysical signs, but the spirtual signs. Those experiences bring me comfort and peace. God bless!

    Comment by Lois — December 28, 2012 @ 2:41 am

  201. Thank you so much for sharing this experience. My husband is under hospice care now with cancer and dementia and it is the unknown that takes me by surprise where these illnesses are concerned. Your posting is a tremendous comfort and help to me. Thank you.

    Comment by Anonymous — December 28, 2012 @ 9:34 am

  202. Thank you and I hope that sharing some of my experiences will bring some comfort to others. The death process can be very scary to loved ones and I think because I knew my father was tired from his long battle with cancer and accepted death, I was able to be more in tuned with the spirtual aspect of death which is quite powerful. If the conditions were different, I may have only been concentrating on all the physical signs and missed the gifts our family was given when my father passed. I remember the hospice nurses saying it was a priviledge to be with someone when they died and God allow us to pick who will be with us at the time of our death. At the time, I truly did not think this was a priviledge to watch my father suffer. Of course the week leading up to my father’s death, the signs, the experiences, watching him take his final breath and having the time to sit and be with him after his passing was one of the most beautiful gifts of my life. It was a priviledge.

    I will share one more story – The past couple weeks have been extremely difficult because it has now been a year since my dad passed away and Christmas was especially hard this year. I only heard my father once since his death. I was resting on my couch and I heard him call my name several times like he always did when he stopped by to have a cup of coffee calling out to see if I was home. It was his voice and I was not dreaming. Last night I wrote my first post on this blog and went to bed crying because I miss him. I was confused that I don’t seem to feel him around and asked him why he doesn’t visit. My son is home from college on winter break and working at a lawn care service putting spring flyers on doors. He sent me a text this morning with a picture of a street sign called “Lois Ann Lane.” I smiled and said, “Thanks Dad!”

    Some may say that is a coincidence, but for me it was a sign that my dad heard me. It’s those little signs we dismiss that mean the most. I hope everyone finds their little signs that our loved ones are never far. Talk to them – they will hear you!

    God Bless!

    Comment by Lois — December 28, 2012 @ 12:17 pm

  203. Lois,

    I found your reply interesting and I probably agree with you. I lost both my parents in the past 9 months – 2 months apart. Your comment about the “signs” I agree with. I use the phrase (and I don’t think i got this saying from anyone other than me) that “we all can walk the same trail through the forest, but we can all notice many different things, or some won’t see what others see”.. You could see a sign, hear a signal that someone else right beside you doesn’t see. That is, I think the signals/signs are there often for us, we just have to know to be aware of them.

    I was with my father as he passed, and in the same house when my mother passed – hard to explain but I found her and couldn’t revive her; never thought of it as a privilege to be there but maybe you are right. Thanks for your thoughts.

    Comment by M — December 29, 2012 @ 2:18 am

  204. My dear grandmother passed due to elderly age. Faith keeps me attached to her and hopeful to see her again. In the meantime, I have had dreams of her elderly, frail, and looking how she used to during the last couple of years. My dreams are haunting because they always involve the end of the world, and I am frantically trying to save her. This month, finally, for the first time since her passing, I saw her in her younger years (how I remember her from my growing up years), strong, and vibrant. She is holding a baby. I learn from her in my dream how to care for the baby (as I have always respected her wisdom). My family recently welcomed a baby into the family and I am struggling with my own infertility issues. The dream has great meaning to me, only I’m not sure how to interpret it.

    Comment by Interpreting a vivid dream from grandmother — December 29, 2012 @ 3:01 am

  205. M- I like your saying and it holds a lot of truth in how we view our life, experiences, and the world around us. I am still grieving and miss my father very much. I look for answers and seem to find them when I need them, but more importantly when I can emotionally handle and process them. In my healing process I have learned to look at things differently with an open mind and heart and try to be more aware of the signs along the way. As I said in my post, maybe it’s all coincidence, but since my father died I have become a more spiritual person. Maybe I am learning these lessons because that is part of my personal journey. When my father was in hospice, I spent a lot of time talking with the hospice nurses (truly angels on earth) and they all kept journals of every patient and they cared for which included the patient’s families. Obviously they cared for us as well. They all shared stories with me about their experiences regarding the death’s of their patients and the spiritual activity that takes place. I felt blessed to find comfort,validation, and the gift of knowledge that the other patients cared for by my dad’s hospice nurses and they themselves, experienced things that are rarely talked about in our culture and helped me find some peace at that time.

    Interpreting a vivid dream – I think we all interpret dreams differently because they involve signs and symbols which mean something different to each of us based on our own personal experiences. Perhaps dreaming of your grandmother and the end of the world was not the world ending literally, but “your” world ending in a way when she died and thus you were trying to save her? Perhaps the dream about your grandmother holding a baby did relate to the new birth in the family. Perhaps it is because you are experiencing infertility issues and you are the baby (she is teaching and loving you). Since it is your dream, only you can decide what it means in relation to your life and experience.

    God Bless!

    Comment by Lois — December 29, 2012 @ 6:00 pm

  206. Lois, just for the record, I was not the one who mentioned about (paraphrasing) the world ending….grandmother etc…….That was somebody else’s post………anyways (trying to recall what I did write)….I said (I think) about seeing signs that someone beside me did not see …..anyways, take care…

    Comment by M — December 31, 2012 @ 1:55 am

  207. Interpreting a vivid dream from grandmother…I read reply & am grateful for help interpreting dream. Thank you. It helped me place closure on the frightening dreams & increase my understanding to “my loss”.

    Comment by vivid dreamer — December 31, 2012 @ 2:43 am

  208. My Mum was diagnosed with stage 3 ovarian cancer August 30 2012, since then she has struggled through chemo she was allergic to the first lot, major surgery basically, gutted, and now is due to have more chemo, she does not eat, her BP is 78/38 she is in pain, nauseous, dizzy, vomiting and diarrhoea. (not that Mum actually ever complains) she is a fighter for sure but I have got a BAD feeling I live 6 hours away and Mum says not to come again until the chemo regime has finished but I am not sure that Mum will make it, I saw her three weeks ago and I want to to see her again but not against her wishes, her temperature is never over 34 and I am very frightened at first she was being naughty doing housework and things she should not be doing, she has five daughters who want to help. given her surgery now she just sleeps most of the time and seems not keen for us to put ourselves out. What should we do ???

    Comment by pat — January 6, 2013 @ 10:53 pm

  209. Pat,

    My computer is acting up and I just had to retype a bunch of stuff here that got erasedin error,

    My dad went through passing in hospital with cancer in Mar 2012. The final 3 weeks approxx, he slept alot, and went downhill. This is not to alarm you, but I wish I had a clearer picture of what was going on with him. The Info from medical people was vague and limited, though another relateive of mine felt she knew he was declining.

    I`m not trying to alarm you, but I would say see your mom as much as you can – reasonbly. without knowing you or her maybe it sounds like she doesnt want to see you go out of your way, Dad did the same for me, but that was dad. I did what I could, but luckily i was informed that he was nearing his end and me and other relatives incl his wife. my mom were up there when he passed.

    I will keep you in my thoughts.

    M

    Comment by M — January 7, 2013 @ 12:00 am

  210. Dear Pat,

    When my Mama was diing, she too had told us kids not to worry about her or visit. But, when I and my siblings went to be with her she was very glad we did. The social worker told us, also that Mama really did want us there, but that she did not want to put us out because we all lived out of State.

    I chose to get a motel a mile down the road from the nursing home she was in, so that I could be close, and if she wasn’t up for visitors I could go to my motel and still get back to her quickly, or I could come and go more frequently throughout the day.

    I was told when I wanted to go, but Mama said she didn’t want us there, that I needed to do what I needed for me. That I was the one left behind and I knew I did not want my Mama to go without me being able to see her and say my goodbyes.

    As it was, I was the one that was with her the four days of her life, even up to the time she took her last breath. I would not change that for anything.

    Do what you need to do for you, whatever that may be. Take care of yourself now, so that you may not have regrets later.

    Blessings to you and yours. MrsT

    Comment by MrsT — January 7, 2013 @ 1:03 am

  211. Thank you Mrs T I will do the same, I just am having trouble accepting the whole situation and everyone keeps saying to be positive and I truly want to but I also want to be real if you know what I mean. Thanks heaps.
    Kind Regards
    Pat

    Comment by pat — January 7, 2013 @ 1:19 am

  212. Thank you M, sorry about your Dad, Yes Mum does not want to put anyone out she is like that. No-one tells you what to expect do they ?
    Kind regards
    Pat

    Comment by pat — January 7, 2013 @ 2:54 am

  213. Thank you for your blog site. You have all the answers I’ve been searching for. My 72 yr old mother, was diagnosed a year ago from today with stage 4 cervical cancer. Up to this point, the cancer has advanced & is spreading at a rapid speed. Yesterday, her blood pressure was at 0, we cried & prayed over her, and continued praying, singing hymns, trying to help her prepare for her spiritual journey….this afternoon her blood pressure shot back up to 100. I’m happy & surprised, and reading thru your blog,i see that patients have a burst of energy a day or 2 before they leave this world saddens me. I lost my father when i was 8 yrs old (24 years ago) to cancer. I don’t want to lose my Mom =(

    Comment by Lauriette — January 10, 2013 @ 4:31 am

  214. I am relieved to have found this site! Although I realize that no one can give extremely specific answers that apply to all, I appreciate the general and honest information offered. My heart breaks for each person who has written a post, but I’m grateful to hear that I’m not alone in feeling like I’m “flying blind” through this. May you each receive greater comfort and support than you can imagine!

    As for me, my mother hid the lump in her breast from everyone in our family until August of 2011. By the time she saw a doctor, the cancer had spread to her spine, pelvis, ribs, and arm as well as one lymph node. Having survived breast cancer in 1988 via a lumpectomy and radiation treatments, she was determined never to go that route again. She tried a number of alternative therapies, and perhaps they helped to some degree, I don’t know. But in late October an MRI revealed several tumors in her skull exerting pressure on her brain and resulting in some minor problems with her balance and memory. These issues have worsened. She has lost the use of her dominant hand and arm and her legs have grown very thin and weak. She even had me make the arrangements for her cremation, though she did assure me that she didn’t feel her demise was imminent. My stepfather recently took over from me in caring for my mother and two weeks ago revealed that my mother had stopped eating. For the first time, he actually believed that she is dying. My sister made an emergency trip across the country to visit all of us, and my mother decided to go on a drug that increases appetite. She began to eat again and seems to have regained some energy. In fact, for the past two days she has even gone out on car trips – quite a surprise, considering that she hadn’t felt up to leaving home in over three weeks!

    My sister returned to her own home a little over a week ago, but my mother’s “improvement” continues. So now I’m confused. I have been fearing my mother’s death would come very soon, but her “rally” has been going on for over a week! I still can’t help but believe that this reprieve is temporary, but it seems so strange. My mother and stepfather are back in denial and won’t allow hospice to become involved. Can I contact hospice for end-of-life information for myself?

    One person who posted on this site worked as a hospice nurse and said that a “rally” can last up to two weeks. If that is accurate, and I feel confident that it is, my mother’s golden autumn must be rapidly nearing its end. During their car trip today Mom and her husband stopped by briefly and I went out to see her – she doesn’t leave the car. For some reason, she looked different to me. I can’t quite put my finger on it, but she just seemed closer to death – despite her increased energy and motivation. Reading these posts helps me feel like I’m not crazy in what I perceive.

    Thank you all for sharing, and for giving me a place to turn where I feel understood!

    Comment by Sheryl — January 23, 2013 @ 12:58 am

  215. Dearest Sheryl,

    I pray you are able to enjoy what time you have left with your Mom, knowing she may not be with you much longer.
    Your Mom and StepDad may not wish to admit she is diing, though deep inside they may know it. This may be how they choose to handle it. To enjoy every minute they have left without fret of the unknown.

    It never hurts to call and ask hospice anything. The worst they can say is that they can not help you. But, what my experience is with them, they will lead you to other sources if they can not help.

    Bless you and yours.

    Comment by MsrT — January 23, 2013 @ 3:17 pm

  216. Dear Sheryl and MsrT

    I am still going through a mix of emotions at times after losing both parents in the first six months of 2012 – 2 months apart, one somewhat expected, the other not really expected.

    For Hospice, I have learned only after they both passed, how helpful they are for the sick, the family, and in my case – someone who never had the ill relative use the hospice. I was referred to the hospice for grief counselling, after the sudden passing of my second parent. They have been a tremendous help!

    I therefore believe it – as MsrT said – that it doesn’t hurt to contact them and see what they say. My parent didn’t want to go to hospice as he felt it was “giving up” if you go there. I have since learned it would have been better for that parent to go there, but there was a series of poor communication within the medical system etc etc…that had us not feeling confident in various medical people we were dealing with; ironically the hospice people we did talk with were quite good, but there was just “so much” happening at once.

    I am grateful for this site, and I hope you find – Sheryl (and anyone else seeking) – the peace and guidance you seek.

    My prayers are with you.

    M

    Comment by Anonymous — January 24, 2013 @ 12:13 am

  217. Mom left to be with our Lord on January 19 2013, at 6:45pm. Hospice nurses were great in helping us care for her. It was painful watching her suffer, she opens her eyes & closes them again for a while, she wants to say something but cannot speak anymore. We gave her morphine to help with any pain since her body was shutting down, she bruised easily…changing her position every 2 hours…but even that didn’t help much. I pray for comfort & peace for you all going thru the most difficult times. Love & Blessings to you all.

    Comment by Anonymous — January 24, 2013 @ 12:35 am

  218. Dear Anonymous,

    Blessings & Love to you. May you have peace knowing your Mom is now with our Lord. Grace & Peace.

    Comment by MrsT — January 30, 2013 @ 5:11 pm

  219. As I sit here by my mother’s bedside in the hospital, my father sleeping on a cot nearby, I am struck by the universality of the comments. The love, pain, bewilderment and helplessness are felt by all. I echo what others have said about how useful your research is and everyone else’s comments are too. My mom had a massive stroke over three days ago, and despite no feeding or water, her healthy heart and lungs power on. She is unresponsive and only on morphine for pain and haldol (?) for nausea. I suppose this could go on for another couple of weeks. A terrible privilege indeed but I am honoured to be part of the last days. I hope the outside world can be held at bay until she is laid to rest.

    Comment by Leslie — February 5, 2013 @ 10:16 am

  220. God bless you and help you all at this time.

    Comment by pat — February 5, 2013 @ 11:36 am

  221. Thank you…your site has been a source of encouragement as i sit by the bed of my dying 87 yr old father. This is not a time of life to easily prepare for. We have worked out hand squeezing signals since he can no longer talk. He began to moan loadly earlier & when the nurse & I realized his pain level was increasing, she left the room to get more pain meds, he looked at me & winked . He may be on his way out but he’s still full of himself. What a delightful moment in our darkest hours.

    Comment by li — February 5, 2013 @ 11:42 pm

  222. Thank you for sharing the “little wink” your father gave you. It is 33 weeks since my father passed and the little wink could almost have been from him too. It made me smile, a rare occurrance though I do try to find something in life to make me smile every day. Thank you xx

    Comment by Anonymous — February 7, 2013 @ 5:46 pm

  223. Here is an interesting article on ten things to look for when somone is dying. It is very helpful and it reminded me of something I had forgotten. I am the poster whose father took a fall, went into hospital and, overnight, slipped from alert and aware to unconscious. He never regained consciousness, although he remained alive for another four or five days.

    This article talks about how dying people may pick at their bed linens — which my father did constantly once he slipped into unconsciousness. He was completely oblivious to the world for the last four days of his life, but he was constantly pick, pick, picking at his bed linens. Apparently this, too, is a common sign of imminent death. I wonder what causes that?

    A very good article. I’d recommend clicking on the secondary links in the article as well, especially the one on what to expect when you’re in the room with a person who is dying. The information in these articles correlate very closely with people’s experiences as they have shared them on this site.

    http://www.caring.com/articles/signs-of-death

    Comment by Anonymous — February 22, 2013 @ 2:09 am

  224. I read your blog. It made me good benefit.

    Three years ago, my parents had three weeks cruise vacation. Before their vacation, I felt something was wrong with my father then I looked at my mother. I can tell that my mother was fine but something was wrong with my father. I asked my father “Are you ok?” He right looked at me and answered he was fine. When we arrived the airport, I dropped them off and still felt about my father. I hugged both and said have fun. They flew to Italy and started with the cruise, which the cruise went across the Atlantic Ocean to Brazil. Before four days of end of the cruise vacation, my father was very sick and had respiration problem. The cruise arrived Brazil and they stayed there for two more days before they flew home. I picked them up from airport. My father looked not normal and was very sick. I told my mother that I could take him to the hospital right away from the airport but my mother said no, she needed to be home first. (I wish I ignore her and I could take him straight to the hospital right away). At home, my father kept repeating to say “Go to Arbys” and he fall twice. He yelled at everyone and me that he wanted us move his TV from his bedroom to the basement. We told him that there was flood in the basement when the temperature was 10 caused water inside the hose frozen and flood. I texted my brother to come over and help me to take him to the hospital but my mother was stubborn and said no.

    Next early morning, he fall again. My mother called a close friend to help him up and put him into the car. They went to the emergency room. Doctors helped him to manage his diabetic (type 2). Two days later, he had a massive stroke on top of his spinal cord (took MRI and doctor found big size of the stroke on the top of his cord). He had left side paralyzed. Next each days, he had double vision, couldn’t speak, couldn’t eat or drink and respiratory problem at last. He wore the ventilator to keep breathing. The doctors told my mother that they helped him with the medicines to make blood thin and help him back to normal life. For me, I don’t agree with the doctors and I knew he was dying. I looked at his nails and saw all of his nail lunula (near cuticles) were purple. It means no blood oxygen. I checked his urine and it was dark brown. I knew his organs will fail. I couldn’t make decision to let him go because It was my mother’s decision to keep him live.

    Each day, I visited my father. He changed a lot and kept dying. The doctor had family meeting and talked with us about let him go. We all agreed. The nurse switched the bands on my father’s waist “DNR” means do not resuscitate. My whole family left except me and my brother who is in the wheelchair (from car accident) stayed with my father. The doctors moved him to the hospice room in the hospital. My father saw me and my brother last time and he said “hope” and it was his last word. My brother left. I tapped my father to say goodbye but he never wake up. He went into coma.

    Next early morning he had breathing trouble and the doctors moved him to other room next to the nurse station with doctor call in. I visited him and saw him. I knew my father was gone, the body…he was not my father any more. The doctor walked in and announced “Gene is not in his body, and he is gone” Next day, he was labor breathing like breathe out and in very hard. The doctor gave him a shot of Morphine. Morphine helped him to breathe normal and slow. I wish I don’t want the doctor to give him morphine. Let him go.

    My mother deiced him transfer to the hospice place near my mother’s house. An ambulance came and took him to the van. There was very bad snowstorm. My mother and my brother left. I stayed with my father and saw him breathe out and in very hard. He almost passed away. They put him in the van and was on the way to the hospice place. He passed away on the van with the driver and his passenger. I wish I knew his sign was coming end. I could get my mother and my brother come back and watch him. I wish I told the driver to not go. Too late. I believe my father wanted to be alone when he passed away. That was his wish.

    The van arrived and put my father in the hospice room. We arrived and found out he passed away. I felt his forehead and hands were warm. Then 30 minutes later, I felt his forehead and my hand quickly moved away. Everyone thought he was live again. I told them that it was a very strong electricity stock. Then 30 minutes later, I touched his forehead again and felt it was cold. I felt his hand was cold. His skin was yellow. We stayed with him for three hours before mortuary service arrived. December 29, 2010.

    I am very gratefulness because he could die in the cruise or in Brazil and the hospitals/airfare cost expensive. He was alive and flew back to USA and went home. We could see him before he was gone.

    Comment by Lisa Roush — February 23, 2013 @ 12:22 pm

  225. Sorry I mean a very strong shock, not stock.

    Comment by Lisa Roush — February 23, 2013 @ 12:30 pm

  226. Lisa,

    Just so you know, there are many, many medical professionals and hospice workers who say that some people will not “pass’ until their family is not there to see them go. Apparently, it has happened too often to be a coincidence. Over and over, you read stories about people who had stayed by their loved one’s side for days or even weeks, taking shifts with other family members to ensure that someone was always with the patient. Yet, over and over, you read that their loved one passed in just the minutes that they were NOT present — they had gone to the bathroom, or to get a cup of coffee, or to take a phone call.

    Some people want their family around them when they pass, but it sounds like a good number will not go until their family has left them alone with medical staff. It sounds like your father falls into this latter category. You have nothing to feel guilty about. You did everything within your power, first to avert the crisis, and then to make your father as comfortable as possible. I’m glad you had the opportunity to see your father again after the cruise.

    Comment by One Person's Story — February 24, 2013 @ 11:51 pm

  227. My lord SO many comments

    Comment by Anonymous — March 25, 2013 @ 7:53 pm

  228. Just read something fascinating on a closed blog for hospice workers. An experienced hospice worker said that, in her experience, shortly before death, the dying person will open his or her eyes, and look up, and then to the right. According to this hospice nurse, this behavior is consistent across all deaths — even if someone has been in a coma for a long time, he/she will open his/her eyes and look up and to the right, immediately before passing. I have never before heard of this. Has anyone else?

    Comment by One Person's Story — April 19, 2013 @ 1:55 am

  229. One Persons Story, I was with my Mama up to the very end and she was never in a coma, yet she never opened her eyes at the end. In fact her eyes became fixed within 3 hours of her leaving this world and never moved since. So, I do not believe this theory holds true for every diing individual. That is my experience and my thoughts. Blessings.

    Comment by MsrT — April 19, 2013 @ 9:52 am

  230. Hi One Person’s Story, My mother did exactly what you posted when she passed away on Jan 19

    Comment by Anonymous — April 19, 2013 @ 3:47 pm

  231. Hi One person’s story, My mother did the same exact thing when she passed away on Jan 19.

    Comment by Anonymous — April 19, 2013 @ 3:48 pm

  232. Hi Anonymous — did she appear to be cognizant of her surroundings or was it more like a waking dream?

    Comment by One Person's Story — April 19, 2013 @ 4:32 pm

  233. One Person’s story, more like a waking dream….a few hours b4 her death, her eyes were fixed on the right side…..And she didn’t respond to anyone therefore i thought Mom is long gone, she’s just not in there anymore, her breathing was slow with long pauses And finally as she took her last longest breath, she looked up at me finally aware & knew she was going =,( I will never forget that moment. Many nights i go to sleep thinking & replaying that moment, crying myself to sleep.

    Comment by Anonymous — April 19, 2013 @ 7:14 pm

  234. Wow. What an amazing experience that must have been for you. You say you cry, though, remembering it. Was it not a good moment? Did she seem sad to be leaving you and the rest of the world behind? I thought, when I read of this phenomena, that I would have liked just one more lucid moment with my father.

    I don’t know if you saw my original post, but my dad was fine (well, as fine as you can be when you’re in the hospital at age 85, with fractured ribs and congestive heart failure) — he was talking and eating a little even, when I left the hospital on Friday night, and unconscious when I returned the next day. He lingered several more days but never regained consciousness.

    I was just leaving my house to go to the hospital when they called me to tell me he was gone the morning of the day he died. I always think, if I had just left an hour earlier, I could have been there for him. But, it sounds like it was upsetting for you? Maybe I wouldn’t have wanted that at all.

    Comment by One Person's Story — April 19, 2013 @ 11:09 pm

  235. My FIL passed away from basically CHF, then reanl failure after a long bout of pneuonia and several antibiotics, a spell with C. difficil diarrhea, back into hopsital. At the end he was diagonosed with MRSA. All the drugs to keep him alive were removed. But one thing bothers us who loved him so much to be there for him to pass over….the staff offered to flip him over, which would hasten
    his demise. What does this mean? How does it accomplish this? We were asked to leave the room while this was being done to our
    father. Please help me understand this one.

    Comment by Thomes Kinnee — April 21, 2013 @ 12:19 am

  236. Thomas, you have raised something that I want an answer to also, because now that you mention it, my relative passed away under almost what seems like similar circumstances. Let me explain. (I am deliberately blocking facts in my situation for privacy and anonymity). My parent who was deemed terminal with cancer had been home – with the terminal diagnosis; my parent landed back in hospital with breathing issues etc. The whole time – while we knew the Cancer scenario – getting info from any of the medical people was like a hide and go seek game. We finally got a regular doctor (long story) after relying on just the hospital doctors and you can never find a time to be able to speak with them. They seem to deliberately mmake themselves unavailable.

    After this “Regular” doctor got in charge, they suggested pulling my parent off “eye vi (IV)”; this was because the parent would be going into long term care, and IV was not an option there; what seemed to transpire after that was a rapid decline, concluding in us being told my parent’s bp was dropping etc and end was near; we got up to the hospital, and they asked us to leave the room – to what I believe was to change my parenta/tend to them in a medical way which had been the way for the months my parent had been in hospital; then all of a sudden we were told “this is it we think (or something like that)”..and werushed back in and my parent was suffering it seemed (possibly a stroke or whatever) it was almost making me think after the fact that they had given him something to speed it along. All of this suspicion is just that – suspicion. My parent died after the death ratttle and long drawnout laboured breathing but with no eye movement or anything (maybe 20 mins after the time were rushed back to the room). I always wondered if they did somehting as it just seemed to come out of the blue.

    I am not trying to criitcize the medical system, but some of the medical people act like god it seems, and do things and don’t want to tell us why. I believe the rapid down turn in my parent was somehow sped up by the acts deliberately to fit some agenda. This may sound paranoid, but I’m very skeptical of some doctors now. I tell everyone I can to make sure you inform yourself as much as possible about yours or your relatives health.

    I’m sorry about your loss, and would welcome replies.

    Comment by LJ — April 21, 2013 @ 2:04 am

  237. Tom, I have never heard anything even remotely like you were told. I’ll be interested in hearing if anyone else has. That sounds very strange to me.

    LJ, My understanding is that hospitals and hospice workers will sometimes increase the dosage of morphine if a patient is on ‘comfort care,’ i.e, simply being kept comfortable until they pass. That is what people mean when they talk about medical staff ‘speeding things up.’ I don’t think it is likely that they took any proactive action to speed up his passing, although, I believe that a lot of hospital staff just let the elderly and terminal slip away through benign neglect. That is what happened to my father, I think.

    In many ways, your father’s death mirrored my dad’s. I made the nurse check his vitals because, although they had been telling me all morning that he was sleeping, it was becoming increasingly clear to me that he was actually unconscious. When the nurse finally checked, there was a big do-to, with the emergency nurse running in, specialists running in, the doctor … the whole nine yards.

    In my dad’s case, the nurse had let his oxygen saturation levels get so low that he would never recover from it. They tried to get me to leave the room, but I wouldn’t, and I saw that they were working desperately to bring his oxy sat levels up. After he was stabilized (at 82! That is so low; I can’t even imagine how low the oxy sat levels had dropped when they first checked), I overheard the emergency nurse complaining to the doctor that the nurse hadn’t caught it. He was saying “no, the daughter (me) had to point it out (to the nurse) a couple of times.” Then they saw me and moved away so I couldn’t hear the rest of the conversation. The emergency nurse seemed really disgusted with the nurse; the doctor took it more in stride. The doctor then told me that it was time to bring my family in from out of state because my father was not going to recover. My father lingered another three days, but never regained consciousness.

    I know how hard it is to understand when someone passes so rapidly, even if the death is expected. I’ve cut and pasted from a previous conversation I had with another poster here on the subject. I hope it helps to provide you a measure of comfort and understanding. I’ve been where you are, searching for answers, trying to figure out why everything changed in the blink of an eye; most of the poster here have — that is why we found this site, I think. Anyway, here is the part of the previous post you may be interested in:

    “I experienced many of the same emotions you have — that I should have been more aggressive, that I should have challenged the hospital staff more, that if only I had spoken up, my father would have lived for a time longer. I was so troubled by the situation that I sought answers everywhere. I am not litigious; I was not wanting to file a lawsuit, there was just a fire in me to know why? Why did the situation change so suddenly? What could I have done differently?

    I want to share with you the most profound advice I received. I got the records from my father’s final hospital stay. The only clarity I received was the confirmation of my assumption that whatever happened on Saturday morning, July 23, meant that my father’s condition became terminal. It was all very vague about what exactly happened, though; clearly, the notes were complied with an eye to a possible lawsuit down the road. So, after checking out various other entities, I was advised to call the county coroner’s office. I wanted to hire a deputy coroner to read the records and tell me what happened. I was very clear that I was not looking to sue anyone, I just needed to know for myself what exactly happened to my father that morning.

    The Deputy Coroner seemed a genuinely caring person; he talked to me for nearly an hour, and convinced me that I wasn’t going to find anything new out by spending hundreds or even thousands of dollars to have a coroner read the notes. He told me something that I will never forget. He said that, in 28 years of service as a Deputy Coroner, he had learned that, once you reached a certain age, or a certain point in a terminal illness, and suffered any kind of medical crisis, the question of whether you lived or died depended entirely on the luck of the draw — the doctor that was rotating through when you came in. He said some doctors would fight with everything they had to save a patient, no matter how old or how ill, and other doctors would consider it a kindness to simply provide comfort to the patient as he or she died (I would add that the attitude of the ancillary staff, like nurses and aides also play a role).

    He said it sounded like my dad’s first doctor was a fighter. She went off shift on Friday though, and the second doctor had a different view of how to treat these things. Further, the coroner said, either method was medically (and legally) defensible. He said it was an uncomfortable thing for him to realize, but that he was sharing it with me so I understood the dynamics of what was going on more fully, and understood also how indifferent the bureaucracy was to any input from me against the decision of the attending physician. I am sharing this knowledge with you for the same reason.”

    I hope this is helpful to you. I am also going to reiterate what I shared with the other poster. There is nothing you could have done to change the outcome. Your father’s doctors and the medical staff had a particular mindset and that was the luck of the draw for your father. If you go back and read some of the older posts, I think you’ll see that we have nearly all been in your position. Please don’t blame yourself. My thoughts are with you, and I believe you will, eventually, be able to obtain some measure of peace. You were there for your father at the end, and that is all you could have done, and really all that matters in the final analysis.

    I wish you peace.

    Comment by One Person's Story — April 21, 2013 @ 6:47 am

  238. i want to die, please tel me a way for it clearly, i’ve searched for it in many ways but i’m not getting the relevant answers,
    it shouldn’t trouble anyone n it should be natural, can you please say where n how exactly we can get poison either readymade or home made.? Please help me out of this…………

    Comment by Varshini — May 3, 2013 @ 1:57 am

  239. Readers, I know that Varshini’s comment is off topic, but she is in pain and has arrived here and I have seen time and again how you all have shown compassion and support for one another.

    I know too that sometimes it is hard to be patient with a person seeking death when for weeks you have watched someone struggle to live.

    But that to me, how difficult it is for people to die, tells me that when one is desperately seeking death, she must be in a great deal of pain, and needs help.

    Varshini, if you read over these comments you will see that even when the body and mind have both been destroyed by illness, there’s something about humans that makes death hard. Even when food is withdrawn and only enough water to wet the throat is given, people live on.

    You aren’t going to find a way to die that appears natural because what you are seeking isn’t natural.

    And poisoning yourself is frankly a very bad idea. You are likely to lose consciousness and then find yourself having your stomach pumped. Because mine was filled with blood about a week ago, I had my stomach pumped for the first — and if I can manage it — last time. It isn’t quick. It is slow, and it hurts like hell — not the pumping itself, but the tube they stick up your nose and down your throat.

    I know a girl who thought she had found a way around that. She took some kind of anti-vomiting drug that made stomach pumping too dangerous, and handfuls of amphetamine to speed up her heart and beta blockers to slow it down. She didn’t die — and is glad she didn’t — but she was awake non-stop and in a lot of physical and mental pain for 3 days.

    Here in the US where we have capital punishment, there are times when the lethal injections have failed. Quite how this is possible I don’t know. But there you are.

    Vashini, if you were in the US, I’d tell you to go to the ER. You’d be admitted to a psych ward and kept safe. Likely then you get medications that wouldn’t instantly cure you, but would regulate your moods to the point where you could start working out a plan to keep yourself safe and ease your suffering so you could endure things until they improved.

    But I see from your IP address that you are in Asia, so I haven’t a clue how your medical system handles people in crisis. And that is what you are having, a medical emergency.

    It is also a spiritual one, and if the medical system isn’t set up to deal with you, could you perhaps go to a temple or maybe a Buddhist convent and tell the nuns that you want to harm yourself and you need a quiet and safe place, that you need someone to care for you, until your mind calms?

    Really I haven’t a clue if such is possible, but you could try.

    I often think of a line from a Bob Dylan song: “May you always do for others — and let others do for you.” I think we all get the first part, but that second part is really important too. Let others help you. They need to do that. It might be family or friends, or it might not. But there are people who want and need to help others. Believe me about this if nothing else.

    Or consider doing for others. I don’t think you are well enough right now to go out and help other people, but let me tell you about another girl I met who once wanted to die until someone got her a ferret — a funny little mischievous pet. The girl lived alone, and ferrets need a lot of care — the room temperature has to be just right, feed and water just right, etc. Now the girl had to get up out of the bed to care for this silly little thing. If she killed herself, by the time she was found, likely this innocent little one who depended on her would have died too. A year later she is doing much, much better — not perfectly — she has had relapses, but she wants to live, and the ferret sleeps with her head on the girl’s cheek every night.

    It may not seem like it now, but someone, somewhere needs you. Not just anyone — you. Or some day someone will.

    I’m going to stop now with a bit of dialogue from a novel I love, Easy Travel to Other Planets, by Ted Mooney. It sums up my feelings about why we need to go on living, even when it hurts:

    “…isn’t there, I don’t know, something people do for each other?”
    “Sure there’s something. …They stay alive.”
    “That’s all?” …
    “It’s not as simple as it sounds…”

    Comment by havealittletalk — May 3, 2013 @ 11:35 am

  240. Thank you for this blog. My dad is in the Active Stage of the dying process , he has been cold to touch for a couple of weeks and as of two days ago , he started the death rattle and the cheyne stoke breathing , he has been in hospital for 6 weeks now and is in multi-organ failure. How long do you predict he will have left , in a ball park area . I need to know as I am the only emotional support my youngest brother will accept and I want him to be prepared . He was admitted to hospital ( we are in the uk ) due to a blocked liver , but when that cleared it was apparent that his kidney’s were very badly damaged . He has been cathiterised for 2 weeks now and 4 days ago the nursing staff started him on morphine.I am so upset writing this as today is the anniversary of my birth father’s death due to a kidney annuerysm …. my dad has raised me since I was 5 yrs old and I am 41 at the end of this month …. I want my dad to be at peace and to stop suffering but I don’t want him to go . I lost my mum and niece 11 yrs ago and my sister 13 yrs ago and my birth father 6 yrs ago today . I hurt so much but I have to be the strong one for my little brother and I want to cry but don’t want to upset my children. I am crying right now and I want to phone the hospital and just be with him…I dn’t want him to be alone …..

    I just want to know what to do

    Comment by mandy — May 19, 2013 @ 10:32 pm

  241. Please accept my deepest condolences on your previous losses and for the pain you are suffering now. I can only share what I know about my own father’s death. After the fever broke (has your father’s temperature spiked extremely high yet? That seems to be a common experience), my father became cool to the touch, and he passed within 36 hours of being placed on “comfort care” — the morphine drip. Prior to that he “worried” the sheets constantly for about two days before his death, picking incessantly at them, even though he was not even conscious. I’ve since learned this is another sign of imminent death.

    I’ve also read that some hospice workers claim the dying person will open his or her eyes, and look up, and then to the right, several hours before death, even if that person has been unconscious for a long time. I discussed this with a couple other posters a few posts up. I don’t know if my dad did that — my brother had been with him until midnight the previous night, and I was on my way to the hospital that morning when he passed. So, he was alone, except for a lovely nurse who held his hand as he died. I am forever grateful to her, and I don’t even know her name.

    I have been told many times that quickness with which my father passed was a blessing, that awful things can happen to a person’s body who remains alive as the organs all shut down. Is your father conscious? I felt as if my father’s spirit left his body several days before his breath did, but he was unconscious — in a coma — for the last three and half days of his life, so that may have been why.

    Do you have a hospice person to consult? They should be able to give you a very accurate estimate.

    Take care of yourself, and know that you are suffering far more than your father is right now.

    Comment by One Person's Story — May 20, 2013 @ 5:09 am

  242. I think a lot depends on whether he is receiving fluids and nourishment via IV and feeding tube because that will prolong things. With my dad, once he was obviously at the end and could no longer remember how to swallow, we didn’t hydrate — just wiped his mouth to keep it moist. I was told that the kidneys making urine was a pretty good measure — once he no longer urinated, he probably was within a day of death. This proved correct.

    Your little brother may surprise you and be support for you, too. Remember: “May you always do for others/AND let others do for you.” You need and deserve support now, too. Peace be with you.

    Comment by havealittletalk — May 20, 2013 @ 8:19 am

  243. My dearly beloved companion of 21 years died on March 11th, 2013. She was just 70 years old, but had been battling pulmonary fibrosis from complications of Rheumatoid Arthritis of the lungs for the last five years. Prior to this, she had beaten Acute Myelogenous Leukemia in 1997. My darling, was a fighter with a body that fought hard to survive. She loved her life, and those closest to her, and in spite of declining health she never complained about her situation. She was always positive and optimistic.
    Her last 12 hours of life were mostly quiet, with an occasional request for a sip of something to drink until she slipped into a coma. She had been in the hospital for nearly two weeks, now battling viral pneumonia…but her body just didn’t have the strength to fight back this time. She had been very ill for weeks prior to being hospitalized. She more or less knew she wasn’t going to win this battle. She told me so. She wanted to die. All of it was just too much for her. She then requested Hospice to help her die with dignity. At this time Hospice Care took over and they prepared her for death. It was the hardest thing I ever had to witness because I knew there was no coming back from this. Her last comments came as she looked into my eyes and asked me to let her go. I had to tell her, with a heart that was breaking, with all the love I had, it was OK. I told her I would love her until the end of time itself. Which is true. She told me she loved me with all her heart and was sorry. I told her there nothing to be sorry for. She wanted to know that I would be OK, once she left. I assured her I would be, and not to worry about me. She wanted to know that our beloved dog would be loved and cared for, once “mommie” left. Of course, I told her. I would love our “little girl” as we always had. She drifted off and slept for a while. Then she woke up, and told me she wanted to say goodbye. I kissed her lips for the last time. Within a few hours, she was in a coma. She never spoke openly again. As I held her hand watching her then die, she would frown a little now and then. She was sorting it out. As best as she could under the influences of Morphine…anyway. Every once in awhile there was a little grin, or smile. She was seeing her family I think. She’d whisper something so inaudibly that I couldn’t tell what she was saying. I think she was talking to those she was seeing. I prayed and hoped she was seeing her mother and “Daddy” whom she lost about ten years earlier and missed so much. Perhaps too, God!
    I prayed and asked for her to be taken into the afterlife with love and that she found happiness there. About five hours before she died, she was silent and didn’t move. Her breathing became more and more shallow, and labored. She was no longer moving her eyes under her eyelids. She was cold, pale, with slight discoloring taking place. I felt she was in between here and there. I just knew she would not linger in that state for very long. She wanted to die and was ready for it. Her body had nothing left to give.
    It was now around 1:30 am, and I was so overwrought emotionally, I couldn’t think straight. I was also physically spent because I been awake for over 36 hours without rest or much to eat. I nearly passed out myself. The hospital staff had to help me. I asked to be with her for the last time, and then kissed her face very softly and whispered, “I love you darling, Bye.” I felt she heard me.
    Bobbi died at 3:40ish am. The Hour of the Wolf!
    She was my true soul mate. Losing her hurts far more than I could have ever imagined. Yet, I know she is waiting for me to come to her one day. Then we’ll be together for eternity. Our spiritual bodies will once again hug and embrace. I truly believe this.
    Death is not the end, but, the beginning of the eternal life that never ends.

    Comment by Rene Andre — May 30, 2013 @ 3:11 pm

  244. Bobbi was a lucky woman to have been so loved. Peace be with you.

    Comment by havealittletalk — May 30, 2013 @ 3:20 pm

  245. At this very moment I’m sitting with a dear friend who is actively dying. Thank you for sharing this information. I was planning to blog about this topic. Maybe I can link your blog if that’s okay.

    Comment by justthatoddgirl — June 1, 2013 @ 8:38 am

  246. Linking would be fine, always.

    Comment by havealittletalk — June 1, 2013 @ 10:11 am

  247. My mom is almost 89, in a nursing home, on hospice care. After her 4th trip to the hospital this year, she made me promise Never Again! I promised and we called in hospice. Mom had the flu in January, pneumonia in February, and four bouts of c-diff. She has had it and wants to die! I’ve been reading and reading all of these posts but I can find one that tells the same things that my mom is doing. Se has all the classic signs of her body shutting down over the last 2 weeks…like hard breathing, not eating much of anything…maybe a half cup of yogurt, cold hands and feet, glassy eyes, and agitation. It’s the agitation that is getting out of control. Today, actually starting late last night, she started talking 90 to nothing….not making much sense, but understandable words most of the time. It’s like hallucinating…but, not always. She just told an aid that she was the best little helper that she has ever had in her life! She looks around and talks and talks and talks. Most of the time, she is kind of yelling at me, her daughter. Wants to know what’s wrong with her, what’s wrong with me, am I going to shoot that dog…etc, etc. She has talked so much the last 24 hrs that her voice is barely there. We can’t get her to be quiet and still and rest for anything. Her meds are 100 Fentynal patch, 40mg morphine by mouth every 2 hrs along with Ativan every 2 hrs. And they just added clonidine 2 days ago. Up until last night, she was resting peacefully. Now,she is like a raving maniac! She can’t be still for a second. The meds are not making a dent in her at all. Is this normal? Can’t get hospice out…it’s the weekend. Nursing home says they are doing everything they can. If this is just a part of the dying process, then I’m ok with it. If they need to be giving her more meds, then I’m not. I need help!

    Comment by Anonymous — June 1, 2013 @ 5:56 pm

  248. Dear Anonymous on June 1, 2013:

    Is your Mom upset or agitated or is she just talking nonstop.
    If it is just nonstop talking, she may be working thru some things, albeit out loud.
    If she is agitated, maybe a call to her doctor is in order.
    Enjoy what time you have left with her, and be blessed.
    You both are in my prayers.

    Blessings, Mrs. T

    Comment by MsrT — June 1, 2013 @ 10:04 pm

  249. Anonymous, I have found, and mentioned elsewhere, that this sort of agitation seems to occur frequently several days before death. Not as prolonged and extreme as your mother’s sounds, but this anger, this lashing out at those around them is very common, from what I hear. I know my father became extremely agitated the night before he slipped into coma, pulling out all of the tubes from his body, trying to get out of the hospital bed — he even punched a nurse who tried to settle him! Or so she said. I do not find her credible at all, and she restrained my father without so much as calling me, then released him early the next morning before I got there, hoping I wouldn’t find out. But that’s another story …

    Anyway, both people who were helping me through the ordeal mentioned very gently that this was something their elderly parents had also experienced shortly before falling into a coma from which they not awake (like my dad), or before passing. Anecdotal only, I know, but, in each case, the agitation, the violence, came on between two and four days before death.

    Although, as MrsT noted, you might want to talk to your mother’s doctor. I’ve never heard of these incidents lasting more than a night.
    Take care of yourself. Your mother is fortunate to have you there.

    Comment by One Person's Story — June 2, 2013 @ 5:08 am

  250. Mrs. T and One,
    Thank you so much for your replies. My mom continued to stay agitated and talking until about 4am this morning. The hospice nurse sat with her all night and I was able to get some rest. Around 4, mom slipped into a coma. I was called at 6 and I’m sitting with her now. She is sleeping peacefully. They say she has maybe 8 hrs at the most. Her breathing is back and forth between regular and apnea. I am so relieved to see her at peace. The past 3 1/2 years have been a roller coaster than neither of us has enjoyed much. It’s amazing to me how a simple little infection can settle in the wrong place of a very healthy young person and take their life in no time….yet, someone like my mom, with an 88 year old body that’s wracked with arthritis, only one kidney and not much of a will to live for the past 10 years can hold on for so long. Life is very strange. My favorite scripture is Isaiah 55:8-9…

    8 For my thoughts are not your thoughts, neither are your ways my ways, saith The Lord.
    9 For as the heavens are higher than the earth, so are my ways higher than your ways, and my thoughts than your thoughts.

    For some reason, I find comfort in these words. It puts everything into perspective for me.
    Thank you again. I will keep you posted.

    Comment by BJ — June 2, 2013 @ 9:11 am

  251. Update on my mom: I take back what I said about hospice…they do come out on weekends. And, I want to go on record as stating that they are wonderful people and I love them. They put mom on Continuous Care early this morning. They had told me this morning at 6am that mom was in a coma and that she had approx 8 hrs. Well, mom woke up around 10am. She has had two periods of the same craziness that she had yesterday, but luckily they only lasted 1-2 hrs each time. Other than those two times, she has slept very peacefully most of the day. She wakes up for meds. And she ate a cup of chocolate pudding at 4pm. Hospice nurses are very surprised by her continual up and down body responses. Her bp has been as high as 130/90 and as low as 90/45. Everytime she starts slipping, she makes a comeback. There has been no change in her meds. and everyone is still baffled by WHY mom has these bouts of agitation and excessive talking. It is possible she has a UTI. But, antibiotics might bring on c-diff again. Catch22. So, of course, we all believe it is still just a matter of time. But it has been so much help for me to have the hospice people there with mom. I was able to go home to eat and rest several times today. I feel mom is in very caring hands while I sleep tonight with hospice and her wonderful nursing home staff.

    Comment by BJ — June 2, 2013 @ 10:35 pm

  252. If it were my Mom going through these up and down I would think that she is working through something that she needs to somewhat resolve before she moves on. Whether it has to do with the here and now, or with the after life.

    Does she communicate with you, or is it like she is communicating with someone(s) unseen?

    I played some on my Moms favorite calming cd music. It helped keep her calm, plus I kept her tv on, muted to a channel that she could look up at if wanted.

    I prayed with my Mom, and encouraged her, that when she heard or saw Jesus to grab on & run home. That she done a wonderful kob raising her children, and that we would all be fine. Though er would miss her.

    Comment by MsrT — June 3, 2013 @ 12:40 am

  253. She seemed so much more at peace when I would sing to her, pray and just hold her arm and gently & slowly pet her.

    Comment by MsrT — June 3, 2013 @ 12:43 am

  254. MsrT….thank you for the response. Mom tries to communicate with me and others, but her words are sometimes very hard to understand. However, every now and then, it comes our very clear. She often asks where’s Daddy…she called both her dad and my dad by that name,,so I’m not sure who she’s looking for. Probably both. She calls out for her mama and her brother. And many times, when I’ve been talking and praying with her about taking hold of Jesus’s hand…..she has very clearly said, “I am! But God won’t let me in!” I’m beginning to think it’s just a matter of “Let Go and Let God”….but mom just won’t Let Go yet.
    As for issues that she still feels a need to resolve…well, there are certainly some of those. She has a couple of problem children and she has never stopped worrying about them her entire life. Even though I’ve told her I would take care of them, she will never stop worrying. For years I’ve asked her to stop worrying. One day, she looked me directly in the eyes and very sternly said to me, “I’LL WORRY IF I WANT TO!!!”
    One suggest you had I will do….I will start playing her cd of George Beverly Shea. He was her favorite. So, thank you for that. And, yes, praying with her does help her calm down a little. I’ll keep you posted.

    Comment by BJ — June 3, 2013 @ 8:14 am

  255. Mom finally “Let Go..and Let God” this morning at 5:25am. I wasn’t there. In fact, no one was with her. Hospice had missed her predicted time of death twice, so they did not have her on a watch. When I left her last night, she was breathing very shallow, but consistently, so I thought I could get a nights rest and had planned to sit with her all day today. But, mom and God had other plans. I have to say that I am very proud of her for doing this on her own. She would never go anywhere by herself. This was a big step for her and a great way to walk out of this old life with her head held high! Way to go, mom!
    I want to thank whoever started this site and to all who have shared. It has been the absolute MOST helpful information that I could have ever hoped for.

    Comment by BJ — June 9, 2013 @ 9:20 am

  256. What a wonderful, wonderful way to look at your mom’ departure from this world, BJ! I don’t even know her, and I am proud of her too. It is such an honor for people to share these most intimate of journeys with others. Bless you. My thoughts are with you, because I’m pretty sure your mom is just fine right now :)

    Comment by One Person's Story — June 9, 2013 @ 7:09 pm

  257. Thank you so much for writing this. My mother started her “death rattle” this morning. I am in the medical profession and find this so unnerving. We have given her more morphine and are waiting for the hospice nurse to come out for support. During the waiting time, I looked up “death rattle and how much longer after” and that is how I found your blog. Reading through it has helped distract me some from the horrific sounds that are coming from across the room. There are no words to express how helpless I have become when I cannot help my mother even swallow the pool of saliva in the back of her throat. We have been writing in our own blog about the entire process from first diagnosis of her cancer (August 2012) to when she was placed onto hospice. You are correct in saying that writing is very therapeutic. Also, finding others who are experiencing some form of caring for a loved one or someone who has cared for a loved one during there last days on earth is tremendously helpful.
    Again, thank you.

    Comment by Amanda Reynolds Regan — June 20, 2013 @ 9:36 am

  258. Amanda,
    I am so glad that my writings were able to help you during this time. I’m sorry I didn’t reply earlier but have been on a much needed small vacation. I was wondering how things are going with your mom? I’m sure having a cancer diagnosis is much different than the process my mom went through. Please keep writing on this blog if you have time. You may help others. Take care. I am thinking about you and your mom.
    BJ

    Comment by BJ — June 26, 2013 @ 4:16 am

  259. I have sifted through most of the above posts and now realise that my dearest pop is about to leave me – I am a nurse but have not specialised in palliative care so this blog has been very helpful. Pop broke his hip about 4 weeks ago and has suffered 2 heart attacks and pneumonia since then. He is now in a nursing home receiving comfort care and I am satisfied that his pain is under control. My husband has been very supportive looking after my 4 kids, allowing me to be at his bedside every day so I have been able to witness the changes that you have described. I can’t tell you how comforting it has been to know that these things are all normal and a part of the process and that the care he is receiving is appropriate. It has been especially helpful as I have the responsibility of contacting my mum who is interstate to let her know that she should be here. Pop is now mostly only responsive to any breakthrough pain, his eyes do not close, his cheyne-stokes respirations are coming in cycles of 8 breaths in 20-25 secs to periods of 30-40 secs of apnoea. He is cooling. He can’t swallow and is plucking at his clothes and sheets and flailing his arms. I am only really able to just be there, give him some mouth and eye care and touch and talk to him I’m feeling completely helpless. Needless to say I have called mum and she will be here today. In fact I should get back there now, the thought of him being alone makes me physically ill. Thankyou so much for your insight.

    Comment by Kylie Harvey — June 28, 2013 @ 6:18 pm

  260. Kylie, bless your heart. Please know that I am praying for you and your mum as you go through this stage with your pop. It’s not an easy process, but in some ways it is rewarding. It was rewarding to me, for me to be with my mama during her last days to her last breath.
    Blessings, Mrs. T.

    Comment by Mrs. T. — June 28, 2013 @ 7:35 pm

  261. Kylie….May God comfort you during this time with your ‘dearest pop’. I always called my dad ‘Dad’….but, I loved how you called yours ‘dearest pop’. Yes, this is a very tough road, but it won’t last forever. I pray for peace for you both!
    BJ

    Comment by BJ — June 30, 2013 @ 9:09 am

  262. my beloved was diagnosed at age 61 with inoperable stomach cancer beyond stage IV in october and given 2-4 months to live. he knew he did not want to go through chemo or be hooked up to tubes of any kind (like he was 5 years ago) and his biggest wish was to come back to india where his life began in the 60′s when he was a free spirit. so we are here, it is going on the 9th month now and we fulfilled his wish and went waaaay beyond. he is TOTALLY alert even though he’s been on 50mg fentynol patch for 8 months and takes occasional dilaudid and morphine pills when he has breakthrough pain. the full story is at our blog. lately we’ve been discussing how he seems to have crossed a threshold…one that most people don’t get to as they pass way before getting to this point. he has malignant cachexia that has wasted his once 224lb body to less than 65 lb which is well beyond the ” people with cachexia will pass when they reach the 25-35% total body weight loss point” information I found on the internet. there’s nothing about 65% body weight loss! he hasn’t eaten anything and hardly drinks any water in months now! it’s like he’s living on good vibes only…that’s what brought me to your site. he was at that pre-death stage several times during this trip but always bounced back. he is my soulmate…but i am absolutely exhausted and he IS having “bone pain” now, and needs me to fold his legs and reposition him in his hotel bed every two hours or less. the past two weeks his b.p. readings have been 80/60 , 105/70, and then 70/50 or less (unreadable, according to the dr.) …. yet because he is bedbound with little activity or stress he’s managed to conserve his energy and keep on going. he does NOT want to let go. thanks for this site. there’s not enough of this information on the internet. namaste, katy

    Comment by going to goa blog — July 1, 2013 @ 10:46 am

  263. Dearest Katy,
    I found and read you all’s blog and watched a couple videos. Bless you for being there for your ‘beloved’. Leaving the USA for a foreign country to you, not to your ‘beloved’, and supporting him in all his needs, and his love of painting. His paintings are awesome. I pray that the foundation your ‘beloved’ and his doctors have started, takes hold and grows.
    “smile 2 the end”. May you be filled with strength and renewed endurance as your ‘beloved’ transitions to leave his earthly body. Peace be with you. Blessings, Mrs. T.

    Comment by Mrs. T. — July 1, 2013 @ 2:13 pm

  264. My heart goes out to each and every one of you dealing with such immense pain and sorrow. My beautiful, kind, caring, and just all-around amazing aunt is dying of cancer. All treatment has failed and our main priority is to make sure she is comfortable. We were told she has days to weeks to live. She has been in hospice for almost two weeks now. We are all very confused and heartbroken. We are told she is dying and she is showing classic signs such as sleeping a vast majority of the time, eating and drinking very little, confused at times, unresponsive at times, withdrawn, etc. However, her medical vital statistics are at times, just fine and some days she is awake, talking, requesting her favorite foods and you can see glimpses of who she used to be behind her beautiful eyes. It has been such a rollercoaster of good days and bad. Some days she does so well I can’t help but wonder why is she even here? But others days, you can see she is dying and know exactly why she is there. We have all told her it’s ok to go. I promised her I would always take care of her children. Although she is not in physical pain thanks to the Angels a/k/a Hospice Nurses, she is suffering. At time she looks at you, her eyes pleading. Pleading for what, I don’t know. She would hate every single minute of this cruel journey and wouldn’t want to live like this. Although I want her with me forever, part of me (the guilty feeling part) prays that God will take her so she no longer has to lie in a hospital bed, stripped of her dignity and life, helpless and waiting to die. I know this may sound selfish, but for her sake and ours, we can’t all help but wonder, “how long will this go on?” We have looked for all the signs and believe me they are there. What’s she holding on for? What are we missing?

    Comment by PM — July 1, 2013 @ 3:59 pm

  265. Bless you PM. It is very hard watching someone you love dearly, in your case your amazing aunt. She may be holding on for a reason, or God may not be taking her home for a reason. My Mama, just days before she passed, asked me,”why won’t God just take her home?” I told her that maybe He was not done with her yet. From then on, I prayed with her that if God is finished with her on earth, to please take her home. She would verbally agree with the prayer, and was at peace knowing that it is in His timing, not ours that she will go home with Him. I know this may not answer your question, but I pray it will give you some peace. Bless you, Mrs. T.

    Comment by Mrs. T. — July 1, 2013 @ 4:24 pm

  266. PM on July 1 — your post is so timely. I am dealing with nearly the same thing with my stepmother — I am her guardian and power of attorney. She has had Alzheimer’s since 2000 (not diagnosed until about 2005), and has been in a facility since 2008.First, because of her wandering, then because she can not take care of herself. I am wracked with guilt about her. I have fought like a lion to keep her alive, and, indeed, her health is so amazingly good, that it astounds all hospital and nursing home staff. She is nonverbal and needs help with everything. There have been times where she stopped eating –got down to 90 pounds or less, and the nursing home wanted to put her on a feeding tube. I refused to allow it, and, eventually she forgot that she was trying to leave this world in this way, and began letting them feed her again.

    The problem is that, back when she used to wander, at breakneck speed, around the backyard of the facility, she fell and fractured her collarbone. I was horrified when the surgeon told me very sternly that, under no circumstances could she be restrained in a wheelchair — that since she was ambulatory, she must be free to walk about. I cried that she would kill herself if she kept doing it. His tone got a bit softer and he said that he knew how hard it was for the family to watch this happening, but we had to allow Eunice what little autonomy that she had. And all she wanted to do was run around the fence of the backyard looking for a escape, back to a happier time. Well, against, the law (I checked what the surgeon had told me with an elder advocate and was told in no uncertain terms that he was right), the facility restrained her to a wheelchair anyway. They didn’t want to deal with it either. I saw what they were doing and I knew it was wrong, but I said nothing, because I wanted her ‘safe.’

    After several years of this, when she began injuring herself trying to climb out of the restraints, I finally told the facility that I knew they were breaking the law, that I had been complicit in it, but that needed to end right now. They fought me tooth and nail on it and would do things like restrain her with a Velcro strap and say she wasn’t really restrained because she could just undo the clasp if she wanted. EYEROLL. Yeah, she could go prepare a baked Alaska if she wanted too, as well. Anyway, she is no longer ambulatory. She seems okay if she is allowed around other people, but my own heath issues have deteriorated to the point that I am temporarily unable to even drive to see her. Someone must drive me. So, without me on them constantly, the nursing home has literally left her lying in bed 24/7, either in a twilight sleep or staring at the ceiling. Her weight remains good because she never moves. My sister is supposed to be checking on her but my sister is completely unreliable.

    Anyway, Eunice “left” her body on Monday. She was taken to the hospital with a “seizure.” Cat scan after cat scan, lab after lab, shows that she is as healthy as a 25 year old. There was no reason for her to remain unconscious for the three days that she did, except that she desperately does not want to living this ‘life” and I don’t blame her. She may as well be in purgatory. I actually thought, “Go, Eunice. You go, girl” when I realized what she was doing. I should note she has done this before. It’s never reached gotten to his point before, but I’ve been called in a rush from work because she has been so unresponsive for so long on three other occasions. Again, with no reason. The hospital is making noises that they may keep her until they figure out why this is happening. It is very clear to me why it is happening, but I cannot tell them that.

    Anyway, my sister, in a paroxysm of guilt and sorrow, has actually been there for Eunice this time (she left me to deal with my father’s death entirely alone. Entirely. I had to pay her $300 to come and visit her dying father). She has spent the last three days, crawling on Eunice, talking to her incessantly, holding her eyelids open, doing everything she could possibly do to bring her back. Eunice finally ‘returned’ today, and ate a little ice cream that my sister gave her against hospital orders. We’ve had words about the situation, although I think we understand each other’s POV now, and my sister has promised that if Eunice recovers and is returned to the nursing home, she will be there for her, taking her for car rides, bringing her to see her great grandkids, etc.

    I think it is a dollar late and a day short. I think my sister will believe that a once a month excursion will be sufficient and that Eunice will remain in her twilight hell for the entire rest of the time. But I don’t know what to do. I ask now, and I realize why the surgeon and the elder advocate said to let her fall if she wanted to walk. Because, she would have broken a hip and died long before now if she had remained unrestrained. There is absolutely no doubt of that.

    I was so proud that I had prevented that outcome at one time! Eunice may live another twenty years like this — she is not ambulatory, so she won’t fall; she won’t get pneumonia because she gets the vaccine, and she will remain isolated because she constantly has that bacteria in her feces that means she cannot be out with the general population. She is in hell, and I put her there. I light candles for her all the time and leave them lit for her all night, in case she can ‘see’ them in her mind and they can lead her out of this world. She seems to be trying, but she cannot cross the finish line. I am in despair at what I wrought. I couldn’t keep my father alive, who wanted to live, and I’ve condemned his wife to a living hell when she just wants to die. There is no doubt of this. She announced that she never wanted to live like this back when she was still coherent.

    Sorry, for writing a novel, again. I am wracked with guilt and I don’t know what I can to prevent Eunice from living this purgatory-type life for the next twenty years. I feel as if I did everything wrong with my parent’s care and I don’t get any do-overs.

    Comment by Another Person's Story — July 4, 2013 @ 2:18 am

  267. I am so sorry you are going through all this, the loss of your father, and your stepmother with Alzheimer’s in a facility.

    I do not believe you have prolonged your stepmother’s life in any way by allowing the facility to restrain her. If she had fallen and broke her hip, that does not mean she would have passed any sooner. I have known several elderly who have fallen and broke their hips, had surgery, been in a facility, become bed ridden and gone on to live for several years before it was their time to leave.

    The breaking of the hip causes lots of pain, uncomfortableness, pain meds, but not necessarily a quickened loss if life.

    I feel your pain and hear you blame yourself, causing yourself allot of guilt feelings, when I do not believe by what you have shared there is reason for this guilt. Guilt causes allot of anxieties, and health issues.

    My TxDad was in a coma dying of brain cancer around the Christmas Holidays and my TxMom had asked him to please not let go until after Christmas. New Year came, and my TxMom realized she had not released her husband. She told him thank you for holding on for her, and he may leave now when he’s ready. Within 2 days he left.

    My Mama had asked me last year when she was dying of cancer, why won’t God take her, I told her that maybe he still had a purpose for her to still be here. So, I prayed with her that that when God was finished with her here, to please take her home. Within 4 days she left.

    I have known several people who have told me similar stories about releasing a loved one, so that they could leave. Sometimes, the dying hang around for their loved ones, because the loved ones don’t want them to leave.

    I share because it helps me through my grieving process, it will be 1 year ago the 16th, in 12 days, that I was with my Mama, holding her, caressing her, singing, talking and praying when she left. I told my Mama she did not need to worry about any of her kiddos, or Grandchildren, or Great-Grandchildren, that when God called her, to go running to Him, that it was Okay. I share because, sometimes just maybe someone will read what I wrote and it may help them in some small way.

    I pray, that what I have written may help you in some small way. I know not if you believe in God or a Higher Power. I am lifting you up in prayer. Praying that you release yourself from whatever guilt you have for your own healths’ sake. Praying that you find peace, and enjoy what time you have left with your stepmother.

    Blessings, Mrs. T.

    Comment by Mrs. T. — July 4, 2013 @ 8:08 pm

  268. My gramma has been released to Hospice care two days ago. They say she only has 2-4 weeks left, however, I am still skeptical. Maybe I am wishful thinking, but….

    She is 76 years old. The last few months she was in a rehabilitation center, and was released with congestive heart failure, and oxygen needed 100%. This past Saturday, she was taken to the hospital because her face and extremeties were extremely swollen. The family was called in to say goodbye, because the doctors had said they recommend it. Her heart rate was fluctuating between 25 and 35 – not good at all. Breathing was heavy, which is rather normal for her. She has sleep apnea and sleeps with a CPAC at night. Later in the day on Saturday, after the family had bowed their heads and recited a few prayers, she was being moved around on her bed. The nurse was speaking to her as she was moving her. My gramma woke right up, sat up in bed, talked and laughed and recited old stories and memories from years ago, which is also normal of her.

    They released her to my aunts house, under the care of the local hospice. and are sticking to the 2 weeks, “maybe sooner”. Im confused. Shes talking fine – her blood pressure is a little hight today, but they say this is normal when only taking meds to make her comfortable (pain only). am i losing my mind? is she really dying , right now? ? ?

    The stories in here are hearbreaking and wonderful at the same time. I appreciate everyone sharing such intimate stories, and am hoping for comfort/positive feedback, and your opinions on my Gramma as well. I don’t mind an email back, either.

    Comment by Patti S — July 10, 2013 @ 7:34 pm

  269. Bless you Patti. I am sorry your Gramma is on Hospice. I am not a professional. I have worked as a Nurse’s Aid in a Retirement Home years ago, and I visit patients/residents at a Retirement Home quite frequently.

    One of the residence is on Hospice, she is 88 years old, and has been on Hospice for over a year. Some very low times and some excellent high times. She has heart problems, and is not ambulatory. Her mind is at times very focused, and other times very scattered. There was a time over the last 3 years I thought she might not make it through another week. But, she proved us wrong. She seems to be doing quite well at this time, for her condition.

    I believe that Hospice takes the very best of care for all their patients and their family. They are very knowledgeable, informative, caring…. Talk to her Hospice nurse, they will be able to tell you if they believe she is close to passing or not. It sounds as though her doctors believe she is, thus the reason she is on Hospice Care. I believe because Hospice’s job is seeing to the care and comfort of those that are dying, that they are so much more able to give you an opinion based on their experience, as well as knowledge.

    Saying that, I also believe patients health have turned around and surprised their caregivers, that nothing is set in stone until there is no going back. My prayers are with you for peace, and comfort. Enjoy the time you do have with your Gramma, understanding it may not be long. If she is passes next week or sooner, or is here a month from now, you will know that you have enjoyed all the time you have spent with her and what a blessing that is.

    Big HUGs, Mrs. T.

    Comment by Mrs. T. — July 10, 2013 @ 9:08 pm

  270. Patti S.
    I just want you to know that I am thinking about you and your Gramma. I can certainly understand how you feel skeptical that your Gramma is as close to end of life as they are all saying. The human body was built by God to do it’s best to survive. So, you will probably see her go thru many good and bad days in the next few weeks or even months. The hospice nurses and doctors missed my mom’s end of life prediction several times. In fact, they were not there when she passed because her vitals had been so good. I know it’s hard not to focus on “when” your Gramma is going to leave, but, as I look back on my experience with my mom, I wish I had not worried so much about “when” and just focused on the “time” that we were being given to enjoy each others company. A lot of my problem was that I was exhausted. I felt guilty that I was so ready for her to go. But I knew she was ready too, so it was compounded stress. My advice to you and your family…take care of yourself…realize that this is inevitable for your Gramma…and just try to enjoy your time with her. One of the things I did…and I’m so glad I did..was to write little notes on my iPad or my phone about each day with mom. Just little reminders of how she was feeling, what she was saying, how I was feeling, etc. Now, when I get sad and start missing mom, I look back on those notes and I can easily remember how much mom really needed to go…to be done with all the pain and misery. I hope this helps. Keep writing. I also go back and re-read my blogs on this site and the responses that people so generously offered me. It helps so much.
    May God bless and provide peace and comfort.
    BJ

    Comment by BJ — July 13, 2013 @ 10:56 am

  271. Thank you, BJ. Eunice is back at the nursing home now, and my sister is discovering that everything I’ve tried to tell her for years is true: that they leave Eunice in bed, alone, awake, staring at the ceiling, constantly, and they always have a reason why she just happens to be that way when you are there. (otherwise, she’s dancing around with a lampshade on her head, doncha know? It’s only when we walk in the door that she lies down on her bed and stares at the ceiling- the lies are really part of the worst thing about it all, I think).

    Anyway, my sister is really staying on top of it this time –going in three or four times a day. I’m surprised and gratified. Thank you so much for your loving response. I think people forget that part of dying is being here long after your mind has left. As I said in an earlier post, Eunice has an incredibly healthy body — I would love to have her physical health! But she’s had Alzheimer’s for 13 years — way longer than most people with this disease have it, in my understanding. And all she knows, in some deep core part of her brain that functions at the most primitive level, is that SHE WANTS OUT!

    I’m not one for psychics or such, but my best friend is, and sent me to a shockingly insightful psychic some time ago. I expressed my regrets to him that it seemed Eunice had not had a very happy life-I didn’t know much about her life before she married my dad, but she was married and pregnant by the age of 14 (just discovered this a couple years ago, going through paperwork); and had left this man and both her sons ten years later. I suspect abuse, but will never know of course. My father was a deeply difficult man to live with as well. I told this psychic all this, and how sad I was that she didn’t seem to have had the best of lives, and he suddenly-just out of the blue-said, “but they are waiting for her when she crosses over! There is going to be such a celebration! You can’t even imagine. They’re going to be singing for days! They will be singing with joy the minute they see her!”

    Now, I didn’t think much of this at the time, but not even a week later, I was visiting Eunice at the nursing home (this was about five years ago). Eunice was still verbal then, but getting increasingly less so. Eunice was taking her after-lunch nap and I gently woke her to see how she was feeling and if she wanted to get up. She was in a place far, far away, her eyes were staring up past the ceiling as though she could see right past it, and she told me that ‘some man had kept her up all night’ the night before singing. She said he sang all night and she couldn’t get to sleep at all. I thought she was complaining (I had completely forgotten what the psychic had said), and started to ask her if she wanted me to ask that things be kept more quiet. Before I could ask, she repeated that “the man” sang all night long and then added, with a look of such profound awe and joy on her face that ‘it was the most beautiful thing she had ever heard in her entire life.’ I was shocked beyond belief when I heard that. Maybe a coincidence, but I’ve never heard her mention anything like that before or since.

    So, yeah, I think she’s ready for her party. And the singing. I think she just needs to find a way to get to it. Meanwhile, we try to keep her ‘happy’ here on earth, but, really, her mind is completely gone. I think she has moments where she realizes that, and just weeps silently for hours. It is so hard to bear, and then listen to lies upon lies upon lies from the nursing home as to why she’s constantly in bed, staring at the ceiling, every time we see her …

    Comment by Another Person's Story — July 15, 2013 @ 4:36 am

  272. Thank you for this blog. I’ve read thru for hours trying to make sense of death. My Mom died in a freak accident 4 years ago at 65. My Dad was ok the first year and started going down hill. He entered a depression from hell and has never recovered.

    I put him in a nursing home in March, 2013 and he gets worse every week. He has no will to live. Hospice got involved in June with a diagnosis of “failure to thrive”. This was the most vibrant, caring man on the planet and I can’t even articulate the anger I feel for him just giving up. My Dad is only 71.

    He fell about 2 weeks ago and “fractured” his hip and femur bone. I have POA and he does not want hospitals, rehab or extraordinary measures. Hospice agreed with me that in his mental state, that a hospital stay and rehab would make it worse, he is bedridden. 5 days later, pneumonia. So, he’s on oxygen and slowly losing his mind. Hospice has been the most amazing group of people ever.

    Hospice has called every day for the past 6 days with updates. I finally googled and found this site. My Dad is at the end – cold hands/feet and mottling (sp?)/ hallicunations/ way too much morphine. Spent the afternoon with him. Told him I loved him and how blessed I was to have such a good Dad. He’s been having the most wonderful dreams which involve my Mom. Anyway, tonight should be interesting since my Dad said all day that he is going on a big trip. He wanted to know if I was going and I had to laugh and say I would go but since I’m only 49, I’d rather not take the “big” trip.

    Who knew dying took this much energy? Hospice did tell me that there appeared to be unresolved conflict in Dad’s life. I have a brother across the country that we haven’t seen in 5 or 6 years. We got him on the phone today and had a good conversation. They both said they love each other.

    I hope the pain and suffering ends tonight. I’m mentally drained and told Dad he’s going home tonight.

    Comment by Connie — July 26, 2013 @ 6:53 pm

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  275. My grandma took a turn for the worse Friday. She was in a Nursing home. She has not had any fever by dehydrated. So they put in Iv. But she started swelling on one side. So they took it out. Then Mottling started setting in. But it will go away espically when they change her position due to a bed sore today her bp was 88/58 pulse 76 temp 95.9.? She is totally unresponsive and is on oxygen. Her eyes are fixed and glossed over. They say she has renal failure and something is going on with her liver now cause her eyes has a yellow tint and some of her skin is yellow tinted. He mouth is gapped open and is having short breaths. My question is my is the mottling coming and going.

    Comment by Deborah R — August 7, 2013 @ 10:57 am

  276. my mom is in late stages of dimentia…shes being cared for in a care facility…im feeling guilty and helpless that i cannot make her feel more comfortable…i often sing to her and hold hands…her eyes dont open often but when they do i am fortunate to get a beautiful smile and sqeezing hands…. mom stopped speaking a couple months ago.. i dont know what i will do when she passes… im the only child, no family left….funny thing, the other night i dreamt my dad put my mother in a wheel chair, smiled at me and proceeded to wheel her away…. a few weeks earlier i had dreamed of my grandmother, who looked years younger holding hands with my mom walking towards me, smiling, and then walking away with my mom, only to glance back with a last smile…i am very close to my mom, being an only son…. she is a great lady and a a wonderful cook… do i ever miss her potato pancakes, delicious juicy cornbeef, and stuffed belled peppers.
    I know in the back of my mind that she wants to leave me now, but before she use to say to me that the only reason i am living is because of you…. I love you Mom! and i will dream of you tonite sending my love and healing energies to you… see you in the morning, God willing….
    by the way, my mom taught me this prayer as a child…

    Now i lay me down to sleep
    i pray the Lord my soul to keep
    and if i die before i wake
    i pray the Lord my soul to take
    Amen

    Comment by chrisiden — August 9, 2013 @ 2:43 am

  277. Dear Deborah R,
    Molting is a result of dropping BP and lack of blood movement. That is why you normally see it in the extremities (hands and feet) first. When they moved your grandma’s body to reposition her, then the blood flow improves. This is very normal. Unless your grandma has something seriously life threatening, such as heart problems, then she might experiencing molting and shallow breathing for several days or even weeks. I’m sorry you are having to go thru this with your grandma, but unfortunately death is a part of life. We all must deal,with it at some point in our lives. May God Bless.
    BJ

    Comment by Anonymous — August 10, 2013 @ 9:49 am

  278. Dear Connie,
    I am praying for you. Dads are so very special.
    BJ

    Comment by Anonymous — August 10, 2013 @ 9:51 am

  279. I’m 30 years old & 3 years ago on the 24th of August I lost my beautiful sister to breast cancer. She was diagnosed aged 29, & we lost her 9 months later. Devastated & heartbroken do not come close to explaining how I feel. Wer are no longer a complete family & nothing will be the same again. My nephew lost his mum at 4 yrs old, he is now 7 but can’t understand where his mummy went or why she left him.
    I wish I had been more prepared for what would happen when she was dying, & how traumatic it would be. From the day my sister was diagnosed the doctors wer very positive about her making a full recovery. She started chemo, lost her hair, was constantly tired, felt sick and didnt have much energy. But she knew the chemo would help her recovery, she was so brave through out her illness, never complained or felt sorry for herself, she just got on with the horrible card she had been dealt.
    After 5 rounds of 2 different types of chemo, & nearly 3 months of doctors telling us how well she was doing, an MRR scan showed that the chemo had not shrunk the tumour. It had in fact made it bigger, because she was soo young the cancer was very aggresive & the tumour was thriving from the chemotherapy treatment. The doctors told us she was an exceptional case, & that the best thing to do was to stop the chemo & have her breast removed, followed by radiotherapy. They wer still very confident of her getting over the cancer. So she went in to hospital & had her breast removed, I was with her when she went for her follow up appointment, & was told the op had been a success & they had removed all the tumour, all that was left was 3wks of radiotherapy to finish her treatment. That went a head, the hospital told her she was clear of cancer & she was booked in to have reconstruction surgery for 6 months later. She went bk to work, did the race for life to raise money for breast cancer & we thought everything was ok.
    A few weeks after this, she started feeling unwell. We thought she had over done it going bk to work too soon. She then started been sick & complained of back ache. Her gp said it was likely to be the medication she was taking. This continued, her gp then said it was just a stomach bug & that she had strained her back when bending over the sink to be sick so much. We had no reason to doubt this. But my sister who I had been seeing nearly every day became a recluse for 3wks. She didnt see us, she didnt want to care for her son, her house was unkept-so out of character for her. I thought she was depressed, that everything had taken its toll on her, she was upset that she had to wear a wig, had lost her breast & she had put weight on due to the steroids. But when we saw her, we realised it was more serious. She could hardly move or walk, & she was been sick throughout the day. We had to beg her to go to a&e as she kept refusing, saying she was fine. In the end she broke down telling me how scared she was, that was the first time she admitted fear.
    In the end we persuaded her. After 5 days of tests, she was getting weaker, sleeping more, & taking morphine for the pain. She wasn’t really eating or drinking. There wer times when she was up beat, others she would be staring out of the window, & often confused. On her 5th day in hospital I was alarmed when I went to visit her, her pupils wer yellow, her faced was tinged yellow. That afternoon the doctors told us the cancer had spread, it was now in her bones & kidneys.. They also suspected it was in other parts, it was terminal, they couldn’t cure her. ALl they could do was give her pain relief & try another course of chemo to give her more time with us. She was due to have the chemotherapy 5days later, on the Monday. But she never had it. She deteriorated rapidly in those few days. Il never forget taking her to the toilet (she refused a commode) even thou it was such a struggle, and seeing just blood in the pan. The Monday she was supposed to have chemo therapy, we wer told she was too ill & only had 3-5 days left with us. That afternoon, she was abit aggressive,she was in & out of consciousness, thrashing around in bed, trying to pull her covers & nightgown off even though she as un conscious. We couldn’t even have a conversation with her. The doctors had to give her to 2 more lots of medication that afternoon to make her more comfortable & calm her down.I talked to her alone for a few minutes, as did my mum, dad & other sister. I just hope she could hear me, & knew how loved she was & that we wer there holding her hand. She continued to be restless into the evening. At 10.30, her breathing changed, it turned deeper & noisier, & a bigger gap in between. we wer scared, it was a horrible noise & called in the nurse, she said it was normal & she could sit in with us if it helped. But we wanted to be alone with her. Just before midnight her breathing had been getting more & more rattelly, then it just stopped. We called the nurse, she took 3 more small breathes then went still. She was gone, we had lost her.
    That day was the worst in my life. It haunts me seeing her that way she was in that hospital bed, so restless, knowing whats happening but not been able to do anything about it. We went from thinking she was all clear, to been terminally ill in the space of a week. Then thinking we would have a few months, then it was 3-5 days. In the end it was less than 24hours. She couldn’t fight it anymore, no matter how much we willed her to. But through out this horrific experience,Iam glad I was there with her all the way, I’m glad that we all held her hand & stroked her face as she left this world I wouldn’t have wanted it any other way, & neither would she.
    I torment myself with questions about the care she got, did the doctors know from the start the cancer was worse than they said? Did my sister know she was dying? If we had got her to hospital earlier would she have been strong enough for the chemo therapy that could of given her more time with us? None of which il ever know the answers to.
    I wanted to share this because I’m so proud of her, she was incredibly brave, & I don’t want that to be forgotten. Hopefully it will help or give small comfort to any one else who is going through a similar experience. Reading through these posts 3 years on, has helped me feel less alone. I have to stay strong & try to carry on living my life now (easier said then done). Knowing that one day I will see her again, as I believe she is waiting for us somewhere.

    Comment by Lilly — August 22, 2013 @ 2:37 am

  280. Lilly,

    I am so sorry for what you went through and losing your sister while she was so young. I wanted to get a note out to you to let you know – as you probably already know – you are not alone. Cancer IS a horrible horrible disease. I went through this from June 2011 approx to Mar 2012 (first signs to death) with my father. I have alot of similar thoughts still – re the care, or lack of it. IT doesnt seem to matter which country we live in , the stories seem disappointingly similar re Cancer and the medical unclarity.

    I want to say that reading your post helped me – over a year later from Dad’s death – that I and many others were there for him. One sibling and my mom and me were there. Circumstances prevented others from being there and it’s not to judge others; I am
    glad I was there. God bless you.

    gld I

    Comment by M — August 22, 2013 @ 2:33 pm

  281. My dad has cancer and probably less than 8 months to live by my instincts. I am preparing myself in the best way possible and find it easier (in theory ) to be this way, although my 2 brothers are not the same. The worst thing for me, is to not be able to tell my dad in 100% terms, how much i love him without it scaring him, if that makes sense. He’s mobile, still drives, has a poor appetite but still with it. My son is 14 this year, and i’m trying to impart my wisdom, by making jokes about when i go, and i think it works well, although i appreciate this would not be an idea that appeals to everyone. Love and peace to all.:)

    Comment by Jason — August 25, 2013 @ 5:37 pm

  282. God bless you, Lilly. Thank you for sharing. I am sure your post will help others having to deal with the horrible disease of cancer. You are very strong. Life is so hard sometimes, but knowing we will see our loved ones again helps us make the best of our remaining time on earth. Your family is lucky to have you, and so was your sister.

    Comment by BJ — September 2, 2013 @ 11:55 am

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    Comment by How to know — September 3, 2013 @ 9:57 am

  284. Jason, you probably can’t really trust your instincts re: time of death, unless you work in a profession in which you deal with death and the dying regularly. First you need to get the facts. What are the doctors saying? What does your father think? Do you have the kind of relationship with your brothers that would allow you to discuss with them, what is going on honestly, and without fear of judgment? I assume your mother is not in the picture? No stepmother either?

    If your father is in hospice, they are a great resource; there is really nothing you can’t ask them. I totally understand your reticence with regard to what you tell your father. I think it speaks to great sensitivity on your part. Not everyone would recognize that a conversation like the one you’d like to have with your father should be approached cautiously. I think it speaks well of your judgment that you understand this kind of conversation might be more for your benefit than for your father’s.

    So, I would start by asking questions, finding out exactly what is going on, what he doctors are saying. If your father is not in hospice, his doctors can refer you to social workers or hospice workers who can walk you through the process of how you approach having this conversation, and other sensitive ones, with your father. You may be surprised to find that your brothers have the same questions and concerns that you do. Or maybe not. We tend to know our family pretty well, and none of my siblings surprised me in a positive way with any of their behaviors when my father was dying.

    Good luck. It sounds like you are doing your best to deal with this proactively and I hope you are successful. Someone is always here to listen and/or try to answer your questions. You have a difficult path ahead of you in the coming months; just remember that your contribution to the process may be limited due to circumstances beyond your control. Please do not beat yourself up if/when this happens

    Comment by Another Person's — September 6, 2013 @ 8:54 am

  285. ^^^ sorry that should be “Another Person’s Story” as my user name. I hit “submit” without meaning to.

    Comment by Another Person's Story — September 6, 2013 @ 9:01 am

  286. Lilly,
    Thank you for sharing the story of your sister’s journey with us. I cried for you reading it. It is just so unbearably sad, and there are no easy answers to the questions you pose. Are you seeing anyone? Friends are wonderful, but given the trauma of your experience, I hope you have been able to find someone, professionally, to talk to.

    Please don’t let one or ten bad experiences prevent you from continuing to look for someone you can really talk to. In my experience, finding a therapist I could connect with has been more difficult than finding Prince Charming. There are so many people in this field who should have retired or not ever been in the profession to begin with, but once you find someone who knows what she is doing and with whom you connect, you will understand immediately why therapy is always recommended for these kinds of situations.

    Best of luck to you. Please let us know how you continue to process this heartbreaking experience. There are more people who care for you than you have idea of.

    Comment by Another Person's Story — September 6, 2013 @ 9:30 am

  287. I guess every one’s experience can be different. I did recognize many of the symptoms described originally. My mom was with me in my room at my home, her request. 15 days prior we had just found out she had “a shadow” on her pancreas. She was having some pain, couldn’t eat or drink, her feet were quite blue, and she was talking to a dear girlfriend of mine that had passed 3 yrs prior. I called the hospice nurse to help me control my Mom’s pain, and when she got there 2 hrs later, my Mom claimed she was not in any pain. Yeah, but later you will be so Momma, just tell her so we can get something different. She told me to talk to the nurse about it, and I turned my attn. towards the nurse, and my mom stopped breathing. About 2 minutes later she did a mild death rattle. Odd thing, I had just asked how much longer, and the nurse said, 2 days approximately, and my mom had already stopped breathing, so it is very hard to predict. It was very peaceful however, and I am happy she got to die in my bed as she wanted.

    Comment by Carol Abood — September 13, 2013 @ 3:56 pm

  288. Carol,

    Bless your heart. Prayers are being lifted.

    Mrs. T

    Comment by Mrs. T — September 13, 2013 @ 7:09 pm

  289. Thank you for being so honest. I have found a comfort in that so many years later it is still true.

    Comment by Mindy Branaman — October 29, 2013 @ 12:46 am

  290. I am reading this as I lay in a bed next to my Dad’s hospice bed in his home. I am 51 years old and to me, my Dad is the best Dad in the world. I love him so much. I can’t imagine my life without him. He started morphine last week and has been more peaceful. He had stage 3 Melanoma 3 years ago and finished a year of interferon. After two years of clear PET scans, we found out it was now in his liver, adrenal glands and spleen. He was diagnosed in September, although in retrospect I knew he was sick in August. Hospice has given me all the liquid medications for the last stages of life. My Mom is scared so I have taken over and moved back in with them. My husband and sisters are caring for my children. Last week he was walking and eating and now he is bed bound with a catheter and only drinking water. I know the end is near and am grateful to know I am not alone. My Father is my best friend and I cannot picture my life without him. I love him so much that I am happy when he is sleeping as I can’t bear it when he is agitated. I hope there is an afterlife because if I don’t get to see him again I can’t live the rest of my life without severe grief. I need some spiritual counseling. I am a fallen catholic and really want to believe in Heaven. I am listening to him breath heavy as I read this. I hope I don’t leave the room when he passes. I did get to tell him that nobody loves him the way I do and he said ” I know that”..I will never forget that we shared that moment. Peace to all of you..

    Comment by Ann Marie Pattavina — November 12, 2013 @ 9:02 pm

  291. your a wonderful daughter…. my mom cant swallow anymore is on hospice… she is my bestfriend…i believe that there is a better world after this one and we will again reunite with our loved ones…its so hard to let go…my mom is 97 and im 63…i was much stronger when my dad passed, as i had to be the man of the family and be strong…
    i was very lucky to have the most wonderful parents…
    my warm wishes and prayers go out to your family…
    c

    Comment by chrisiden — November 17, 2013 @ 1:12 am

  292. Mrs. T,

    My stepmother,Eunice, finally left this world yesterday morning. And, after all the anguish about her being here when she didn’t want to be, I was just as horrified by her death as by her life. Hospise had just started coming out and working with her last week. I told them that with someone coming out daily, I expected a regression of her symptoms, and an improvement in her condition, and that’s exactly what happened. They initially said she had months left to live, but her improvement was rapid and incredible. As I said before, she’s just such a social person, if the nursing home had only gotten her up and put her in a room with other patients, I believe she would have been fine. At any rate, the hospice worker calls me late — about 6:00 pm Wednesday — to tell me she’s just leaving the hospital and how much Eunice continues to improve, she’s eating better, she’s opening her eyes and making contact (which she hadn’t been) and she’s responsive. I’m thrilled.

    I get a call at 8:30 am Thursday and Eunice is dead. That’s all I know. I go to the nursing home and I can tell the hospice worker is very upset about something but she’s saying that Eunice passed away peacefully in her sleep. I kept asking what she died of. How was it that she was fine and responsive and eating last night and now she’s dead? The hospice worker lied to me — I kept catching her in lies and finally she broke down and said that Eunice began agonal breathing the previous night and staff didn’t call anyone — not me, not the hospice, not the hospital. They let her die all night long without doing anything or telling anyone. I was horrified. I called the coroner’s office, but they said they won’t investigate unless the hospice makes a complaint. Meanwhile, the hospice is lying to me again, and covering for the nursing home. So, I have no recourse. A week ago, I would have been thrilled that Eunice finally made it out of this world, after trying so long and so hard. Now I’m horrified and depressed that they left her lying there dying in agonal gasps all night without telling us so we could be there, or have a doctor check on what’s going on.

    And my friends are angry with me for being so upset. They think I should be glad that she’s escaped and I am. My best friend of forty years hung up on me because I wouldn’t simply accept that Eunice was in a better place and ignore the circumstances of how she got there. I don’t know a single person who would admit to leaving a dog dying on the side of the road all night, so why is everyone acting like that is just fine to do that to Eunice? She must have been so frightened and no one even bothered to pick up her hand, and hold it while she passed.

    How can a nursing home just get away with this, with no repercussions? And the hospice covering for them? What a racket. I wish I hadn’t even called Hospice in. I know several people — the elder advocate being one of them — who dislikes hospice greatly. Which always puzzled me as they seem to have such a good reputation. Now I know why. This hospice has zero integrity. They are colluding with the nursing home to avoid any trouble. The director told me that the nursing home has new management and I should use that as an opportunity to build bridges. I asked her what she was even talking about. How does ‘building bridges’ with the nursing home make it okay that they simply sat around and listened to Eunice die? All night long. She was in the apnea stages when the morning shift came on and was dead within ten minutes. The morning shift told hospice that the evening shift just said, “oh yeah, she was in agonal breathing all night.”

    I am so glad Eunice is in a better place; I just can’t understand how people can live knowing that the most vulnerable among us are treated like this. They are going to be old and vulnerable one day too …

    I can’t wrap my brain around this. Why am I the only one who is horrified by this situation?

    Comment by Another Person's Story — November 23, 2013 @ 3:44 am

  293. Another Person’s Story: I am horrified, too. It wouldn’t have taken but minutes to call you. I can’t understand the double lack of compassion, first for Eunice, and then for you. I don’t know what you can do, either. I feel that it is unlikely anyone is going to take any responsibility, acknowledge any wrongdoing, or apologize, and that makes it worse for you. Yes, Eunice is beyond suffering. Yes, whether you were there or not she would have died. But I’m with you; the truism that it isn’t the destination so much that matters but the journey certainly seems to apply here.

    About all I can think of that you can do is to write reviews of the nursing home and the hospice service anywhere and everywhere: yelp.com, Angie’s list, caring, a place for mom, etc. Post it on Facebook and set “share with” as “public” for the post. If I were I to be shopping for a nursing home or hospice and read this story, I would not for a minute consider taking my business there. And sadly for most — maybe all — of these places and services, they are businesses first. So hit them where they will be hurt: in the pocketbook.

    If you want, edit your comment to include your city and names of nursing home and hospice, and I will add them to tags so comment may appear on Google, etc, if people search for info on them.

    For general info, I do want to remind readers that “hospice” is a concept, but hospices are businesses, some better, some worse.

    Comment by havealittletalk — November 23, 2013 @ 9:55 am

  294. I know a girl that touched my heart. Her name was Talia Joy Castellano. She died of cancer and reading this really made me understand what she went through poor baby :( thank you

    Comment by naomilyrah — November 25, 2013 @ 1:11 pm

  295. Hi,
    Thank you for the info. As I sit with mom, I can’t believe her death is so near. I noticed her two fingers, pinky and ring finger were white this morning. SO……Sad…..
    Pat

    Comment by Anonymous — November 27, 2013 @ 10:57 am

  296. As I sit holding my mum’s hand, I’m so glad I found this site. It has given me the strength and the knowledge to be by her side for another night, knowing that the end is truly near.

    She has late-stage vascular dementia and suffered two stroke-related falls over three weeks ago now. I think everyone expected Mum to pass in the week following her last fall – she was unresponsive, felt no pain etc. She surprised everyone then when a few days later she was found trying to get out of bed. Whilst she rallied, it was only partial. She lost the urge to eat and drink and for three weeks managed only sips of water and the occasional spoon of yoghurt. I’ve watched her get thinner and thinner – how skeletal she has become is very distressing in itself. She was very fidgety and found it difficult to sit still or lie still – always taking the covers off and making as though to stand.

    Her breathing changed 6 days ago. The ‘rattle’ started as did the apnea but then it went back to normal for a few days. I got a call on New Years Eve to say her breathing had changed again and I’ve been with her pretty much since then. I was only expecting to stay one night but she’s a fighter. She’s unconscious but comfortable. It feels like she has been holding my hand as much as I’ve been holding hers. I popped home for a hot shower earlier today, almost expecting her to go once I’d left but no, she’s holding on for something – I don’t know what but I wish she’d find her peace.

    Her feet are cold now and the rattle has started up again. We’ve had the mandibular movements too. I love her so much – it’s horrible seeing her battle through and want so much for this to be over. I feel like I’ve already lost her once because of the dementia and I’m about to lose her again. Reading this though has made me determined to stay with her – after all its the least – the only thing – I can do for her, however daunting that feels right now x

    Comment by CS — January 3, 2014 @ 7:42 pm

  297. CS, bless you.

    Comment by MrsT — January 3, 2014 @ 11:36 pm

  298. reading these posts have brought tears , but also a lot of knowledge about the dying process. My mother, who turn 80 on the 19th of this month, is actively dying of Alzheimer’s. She is living with my sister out of town. she is bedridden for several weeks now and has started mottling. I wish I could be there for her and my sister. With this terrible Polar Vortex of snow, it doesn’t look like that will happen. I read a post about the music and raising the head and chest and how even though the eyes are closed they can still hear you. I then asked my sister to make sure all these things were done to help make her less anxious and as comfortable as possible…This brings me some comfort that I am helping from afar. God willing he takes her soon…What a horrible disease. God’s peace to all who are suffering through this process.

    Comment by Anonymous — January 6, 2014 @ 9:21 pm

  299. Have a Little Talk: Thank you so much for your offer. I’me sorry it’s taken so long to respond, I’ve been very ill myself. I’ve filed a complaint with the state through the elder advocate I’ve been working with. She says to be careful about naming names until things are sorted out as apparently the social worker who was so horrified by the nursing home’s actions may be coerced into walking back her comments (I have a witness, but I know from experience that investigations rarely go that far in my state). So, many thanks again, and let me see what this elder advocate recommends, if you don’t mind.

    Comment by Another Person's Story — January 6, 2014 @ 10:32 pm

  300. Anonymous, bless you.

    Comment by MrsT — January 7, 2014 @ 12:37 am

  301. This is the portion that Ill focus on in this posting.

    How can I get a Minecraft Gift Cide Generator Premium Be
    the cause of free. You will be able for you to play online multiplayer on
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    Comment by Youtube.com — February 28, 2014 @ 2:44 pm

  302. We lost my mum last Wednesday. She was in the final stages of dementia but only 59 years old, the alzheimers originally being diagnosed 6 years previously. She was in a Hospice for the final week and a half of her life. We had been through the “dying” process before with my Dad, in the same hospice, oddly in the same room. He was 58 and died of a tumour to the brain. I came across this blog in the lead up to my Mum’s passing, despite having witnessed the “dying” process before I was still looking for answers, a timetable so to speak for the process – there is not one. What really struck a chord with me is this bloggers blog about “dying being such hard work”. I have, in both my parents cases, found the moving out of a house analogy to be spot on.

    Both deaths were from different diseases yet the final few days were very similar. I’m lucky to have another 4 siblings to have shared the experience with. Although it seems unfair that both my parents died at a young age I feel priviliged to have been with them both in the those final days. My brothers and sister talked, laughed and cried together in those final days. To my mind it has got to be better than learning a loved one has passed suddenly with no chance to say thank you and goodbye? The grief is different as it feels now as if I’m mourning the couple and parents they were. As my Mum suffered an aggressive form of early onset dementia I feel I lost her in many ways long ago

    Also I would like to comment on the moment after the final breath has been taken. The utterly peaceful sense I got that they were no longer there in mind anymore. The struggle was over. I went back to the hospice the following morning and saw my Mum for the final time (I had not been able to face doing that with my Dad but wish I had now). I was not upset as I’d expected to be looking at my Mum for that final time. I was sure that she was no longer there in spirit or soul. I was merely looking at the shell of her body, Mum was elsewhere – I can only hope getting her long deserved rest with Dad.

    Comment by SG — March 4, 2014 @ 5:25 pm

  303. for everyone: I lost my beloved mom Lilly just 7 days before her birthday last Nov 20th, 2013… she died in my arms and I kissed her lips to catch her last breaths… she had dementia, but the real part of her was still with her the last few months…she had death bed visiions (which everyone said was crazy) but somehow i believed the invisible people she was waving at and speaking to were real… i buried mom on Nov 27th, her 97th birthday… a few days later when i went to visit her the most beautiful red Hummingbird came to visit me….it flew right up above me head, moved backwards and side to side then flew around me… another bird in the distance was looking for attention: only to move his chest from side to side and flapping his beautiful Bluejay wings…. together these 2 birds flew off… leaving me crying and laughing at the same time… just recently a Dragonfly came to visit me at the cemetery at my Moms gravesite… only to fly around me and as the second fly around i noticed a tiny dragon fly at its side… i watched and watched until they both dissapeared into nowhere… i really was never sure about an afterlife, but now, thanks to my Mom, i believe life goes on and she was messaging me to say shes ok…
    by the way, at the time of the dragonfly appearing, i had asked my mom mentally where are you now… her response to me was, everywhere and anywhere….
    when i saw the hummingbird that day, i mentally said to her, you are probably not here anways and walked away to see the most magnificent huge red hummingbird…
    i am truly a believer now in afterlife, no matter what anyone says or thinks of me…
    …has anyone ever experienced your telephone to ring, and connect you to the business you were viewing on the internet? … well this also happened to me… as i was viewing and reading about a certain doctor, my phone rang, and i was connected to the answering service…
    i did not dial or call… i believe it was again my Mom letting me know she is around and watching me…
    everynight at sleep time i talk to her and ask her to come into my dreams… i always wake up fresh and and ready for the days now… my mom and my dad are the greatest in my life… i miss them so much and i know i will be with them again… so i try my best to live each day to its fullest….
    blessings to all…
    chrisiden

    Comment by chrisiden — March 4, 2014 @ 7:54 pm

  304. My father in law is 86 years old and at end-stage CHF. He was hospitalized a month ago with breathing difficulties. While in the hospital, he insulin level dropped which caused heart problems. They started him on a dobutamine drip which helps the heart beat. They did two round of this drug and each time he failed. The third round of this worked a perceived miracle. The day before the miracle, we were told by the the doc in the ICU that we were at the end of his options and death was very near. That was 2 weeks ago. At the time of that news, we gathered around my father in law and discussed his options He did not want to do this anymore and he told us he was ready to go to be with his wife. The next few days he improved, and he kept asking why he was still around. He had reached a peacefulness and acceptance in his life and we actually joked and laughed about his passing and what he was facing on the other side. He left the ICU and was placed in a step-down unit where his condition stabilized. At that time, he decided to stop all of his heart meds – very strongly voicing his wish to be done with everything. We told him we were with him no matter what his decision. The next few days my husband and I were in touch with hospice, trying to honor his wishes to die peacefully. Of course, the docs don’t want to see a patient with a death wish so a doc ordered a psychiatric consult. That night, at our visit, he was very agitated and told us he had changed his mind – - that he wanted to take his drugs again. We asked him what changed his mind and he said, “well, you guys are always here visiting and it’s probably a good idea to take my meds. But you could tell he was angry. He told us they think I am crazy – why did they do this to him? I think this doc made my father in law feel guilty about his wish. They thought he was depressed, hence he wanted to die. I guess you are not allowed to make a decision to do this without being labeled crazy. At any rate, he is now in a nursing home for “rehab”. He is now withdrawn, barely talks to us when we are there, sleeps most of the day and can be mean at times. He was never mean. I cry every time I walk out of there as I don’t know him anymore. I think the doc told him we wanted him to live and he is mad at us for not honoring his wish. We have asked him several times what the doc said and all he says is they think I am crazy and my brain is all mixed up. Any thoughts out there? Why isn’t there more concern with quality of life versus quantity?

    Comment by Linda Boettcher — March 6, 2014 @ 12:28 am

  305. Reading lots of the comments above really helped with my grieving and depression – my grandma passed away last Wednesday (March 12th) at least makes me happy that she passed away by my side. I still miss her every day. She died at age 62 (she would have been 63 in May 20) all symptoms of a heat attack (waiting on her official death certificate) – she was a very tough person, survived 2 Open Heart Surgeries.

    Her final moments: My grandma, Maria de Jesus, called me at 9:51am, she said she had heart pain, and if I could call the paramedics. I did.

    We walked out to the side of the house. My grandma sat on a chair waiting for the paramedics to arrive. I was next to her the entire time. I believed she tried to talk to me, she moved her mouth but no words came out – the look on her face was of worried and scared, and sadness. I held her hand, she cried for about 10 to 12 seconds before closing her eyes for ever, I didn’t realized at the time but she had passed away in my hands, paramedics arrived 2 seconds after she had closed her eyes, she passed away by my side, I was the last person she saw alive.

    Comment by Daniel Picon — March 19, 2014 @ 10:58 am

  306. My Father is in Hospice right now…Laryngeal cancer, with a major stroke. The stroke causes such weakness that he could no longer received chemo. Last weekend I thought for sure he was dying. His respirations were only 10 (normal is 20) heart rate 58 and BP 104/64 slight temp of 101 axillary.. His eyes were glazed…very restless. He could not make eye contact. He kept reaching for something and look up into the air. I said my goodbyes and told him it was ok to let go…SUDDENLY he sat up gave me a HUG and went unconscious again. The next day the nurse confirmed he as deteriorated. On Thursday he became conscious again,even able to sip fluids. He’s had diarrhea from the tube feeding, but that has been the case for 8 months now. His stomach was never able to handle it. It is now Monday and the Hospice Nurse initially thought he was RALLEYING..but they have never seen someone Ralley this long, usual they perk up for up to a day or so. Now his BP is 145/80 Pulse 122 and Respirations are 22. So his heart rate doubled in a week. I don’t know what to think or assume anymore. I was even thinking maybe he had another stroke and this isn’t a RALLEY..it’s just him healing. Any thoughts? I’m going nuts trying to figure out whether to prepare for his death, or prepare for more suffering.

    Comment by Mira01172003 — April 21, 2014 @ 8:36 pm

  307. My father died 14 march 2014 from COPD.. Even though he had been struggling for the pass 2-3 years in and out of hospital, he still had a very active mind and did not know or was told he would be giving morphine to hasten his death.. I spent the last 6 days and nite with him in pallitive care and am so gratefull i did.. I miss him so so much, he was such a gentle loving and caring father. I know my life will never be the same with out him in it… To be honest i am completely shattered and lost. Just some advice, if you have a really ill parent in hospital do not trust the nurse’s or doctors, look what medication they give, and always ask questions..

    Comment by Alf — June 4, 2014 @ 11:45 pm

  308. My lovely Mum died on Saturday evening. It is now Monday morning and I am still in a daze. Like so many people on this site, watching my Mum slip away from us was, and still is agony, but at least we as a family are comforted by the fact that she is no longer suffering. She had left such an active and independent life, until being diagnosed with lung cancer, exactly 6 months before the day she died. It has been a very long 6 months, for her more than anyone and no one should have to suffer in the way that she has. Fortunately, her last 10 days of life were spent in a beautiful hospice, surrounded by staff who loved and cared for her like she were one of their own family. We were informed that Mum could be reaching the end of her life on Wednesday and so we decided that we wanted to be with her until the end of that journey. I feel blessed that I was able to literally hold her hand for those last three days and nights and hope that she gained some comfort from that. I love you Mum, with all my heart. xxx

    Comment by Joanne Spackman — June 9, 2014 @ 6:14 am


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