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.
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?
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.
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.
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.
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.
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.
this is really helpful – thank you.
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.
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
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.
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.
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.
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.
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!
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.
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.
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.
A “terrible privilege” — yes, you are quite right. A perfect description. Peace to you and yours.
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.
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.
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 !
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.
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.
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.
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.
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.
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.
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
“Life has to end, but love doesn’t.” How very true.
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
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
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.
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.
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
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.
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.
Scrapbookin is a good ideal….!
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.
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.
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
Peace be with you, and thank you for letting me know.
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
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!!
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.
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@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
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.
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.
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.
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
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..
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.
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.
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.
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.
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.
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
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??
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.
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.
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.
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
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.
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
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.
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?
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?
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.
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.
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.
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.
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.
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.
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)
Your blogs have helped me to understand what to look out for and I thank you for sharing your experiences.
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!
I am sitting here at the bedside of my father. The death rattles have been going on for hours. This is so hard.
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.
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.
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?
Mums finger have now started twitching?
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.
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
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.
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.
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.
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
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.
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.
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.
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.
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!
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.
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.
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.
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.
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.
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.
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.
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?
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…
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.
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.
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.
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.
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.
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
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.
wondering
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
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
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
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?
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.
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.
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.
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
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.
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.
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.
Im thinking about everyone that has posted on here. Bless you all x
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.
God bless you George….
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.
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.
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.
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?
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.