My Mother’s Last Three Days

Easily the most read and commented upon post on this blog is one that I wrote after my father’s death, How to Know When Death is Imminent, Signs Someone is Dying.

My mother died six weeks ago on July 9, 2015. I called my father’s death “hard work.” It was the first for which I had kept vigil, and now I know his was an easy one, at least for me. He suffered from Parkinson’s, dementia, and Alzheimer’s and had been in and out of consciousness for days prior to his death. He couldn’t talk, so I did not know if he was in pai or scared. He rallied to smile once, although I could tell from his eyes he was aware that people were with him.

My mother only lost consciousness at the very end, helped along, I think, by generous doses of morphine.

She had been totally bedridden for 18 months, and full assist (had to be fed) for the last six or so.

But she never became demented.

My mother was disabled by rheumatoid arthritis, and weakened and finally defeated by kidney failure. The last year of her life she was assaulted by edema. Using diuretics compromised her kidney function. Not using diuretics meant her arms especially would look like half-full water balloons, and every time she would be touched, she was in pain. Even the seam allowances on the insides of her sleeves tormented her. This is what we could see. Edema also puts a strain on the heart.

Through careful monitoring, the doctor was adding the diuretics as needed, then pulling back when the kidney function numbers started looking alarming; then repeat and repeat.

My mom had a decent quality of life, primarily because of the graciousness and professionalism of the staff of Pisgah Manor Nursing Home, who I will never be able to praise highly enough. My mom loved her meals, and she raved about the food. I’d leave Pigsah Manor hungry when I’d come to feed her. Let’s stop and consider that: Have you ever heard any visitors say they left a nursing home hungry? And my mom loved to bird watch. We had several feeders going outside her window, and I have never spent so much time bird-watching. This spring and summer brought so many goldfinches.

Then at the end of June, I had a call that my mom was hallucinating horrifying scenarios, like her blankets were on fire and George W. Bush’s dog was bleeding out on her bed (really). The nursing home suspected a urinary tract infection, and the specimen confirmed this; within a few days she seemed much better, but for the first time wasn’t eating every morsel on her plate. I heard a strange sound from her lungs, like a cat mewling.

Monday, July 6, I went out to the home; they were about to call me anyway. My mother had a gurgling sound in her lungs now, but no other cold, flu, or virus symptoms. She obviously did not feel well; she had no appetite and would only drink with persuasion.

When her morning CNA left, she reported that my mom had produced no urine. I knew we were likely in trouble then; I had learned that when my dad died.

That night, I made calls to those I needed to. There was a contingent who thought I should have her transferred to the hospital. They were certain that once there, she’d get some medication that would fix her up just fine. I decided, since she was fully cognizant, to ask her what she wanted to do.

Tuesday a catheter was inserted. After her bladder was drained, it was obvious she was simply not making urine. I told my mother she was very sick, and asked if she wanted to go to the hospital. She declared she would fight this problem at the nursing home among people who cared for her.

The next two days, my mom was frightened and in pain. She said over and over and over again: “I can’t breathe.” And over and over I would tell her that yes she could breathe, if she could not, she couldn’t talk. She had supplementary oxygen; we would tell her to breathe through her nose calmly and slowly and out through her mouth. It didn’t work.

“I can’t breathe.”

She sounded like — and likely felt like — she was drowning. Edema had spread to her lungs.

Still no urine: we were coming to the end. The nurses did not hide this from me. Always there is the caveat that no one knows for sure, people will surprise you and so on, but there was no reason to believe this would be one of those times.

I was encouraged to go home and rest. Wednesday morning when I walked in I immediately noticed two changes. My mom was ashen, especially on her upper lip area, chin, and the region of the face around her mouth.

I am not trying to be poetic when I use “ashen.” It is used for a reason. The color is much the same as ash.

I’m also not trying to be poetic when I say that the light had gone out of her eyes. This is hard to explain, but there was a haziness or dimness. Perhaps only someone who knew my mother before would have seen the difference. She was, however, still fully conscious, and still panicking and saying “I can’t breathe” and “Help me.”

I asked her again about going to the hospital, and she refused. I told her she was very, very sick.

She asked if she might die. I said yes. When? No one knew.

She seemed genuinely surprised by this. Here she was, 6 weeks shy of 86, completely bedridden and disabled, was refusing food and water, not urinating and didn’t think she could breathe — and yet she was surprised.

I asked if she wanted me to make any calls so she could talk. No. The TV had been off for a few days now, and we were down to her caregivers, me, and her.

She said she was scared. I said what of. She looked at me like I was a total fool, and said, “Dying, of course.” She agreed when I offered to call a chaplain.

The rallying that was so dramatic with my father took a different form with my mom. My mom was exceptionally determined. She had strong opinions, and this blog is named after a phrase of her that could strike fear in those on her list (I’m going to have a little talk with him. . .”) while spectators would get the popcorn popping and wait for the fireworks. She was also pretty good at denial.

When my daughter and her boyfriend came by, she brightened up; she loved visits from my daughter. But after ten minutes, my mom told the two to get along with their evening and go out and enjoy themselves, that she had no intention of dying that night and that she would see them tomorrow. And the next day. And the next.

She tried the same with me, and I went outside to make some calls. Coming back in, I encountered the Perfect Daughter, there five days out of seven, who told me my mom bragged that she had “sent them all away.”

That was the last liveliness I saw from her. The night went on. There was no more conversation, just  “I can’t breathe” and “Help me,” and me watching the clock for when she could have more morphine. The intervals were less, the dosages greater.

My mother died around 9 am Thursday morning. I was not there. She was still conscious when my husband arrived to take over, and she was worried about me.

I was in the hospital waiting for an upper endoscopy.

Midnight I had gone to get the meds nurse; she had delivered the shot, and I was feeling a bit woozy, but blamed it on tiredness and stress and leaned my head against my mom’s railing. The next thing I knew, I was looking down on myself, and I was covered in blood, the chair was covered in blood, and there was a pool at my feet.

My mother was crying out,  “I can’t breathe. . . Help me.”

I had to tell her I could not, that I needed her to press the call button. She couldn’t. So I staggered into the hallway and yelled for help.

That was the last I saw of my mother, and the last she saw of me.

I had had my thirteenth portal hypertension upper GI bleed at her deathbed.

Watching Dying: New BBC Documentaries, PBS Frontline

I came across this a few minutes ago, purely by accident. Tonight, May 12, the BBC, as part of its documentary series Inside the Human Body is going to show the death from cancer of an elderly man who agreed to be filmed over the last two months of his life in hopes that his experience “would help others.”

The program already is sparking controversy, but the BBC has responded that

‘Death is an important part of the human experience, and showing Gerald’s death is integral to understanding what happens to the body when it is no longer able to function properly.

‘The BBC does not shy away from difficult subjects like this, but presents them in a sensitive and appropriate manner.’

The makers of Inside the Human Body were put in touch with the cancer sufferer by a hospice in Pembury, Kent, which said it was ‘important that life-threatening illness and death is discussed and understood more in our society’.

The Daily Mail reports that

the death scene lasts for less than five minutes and the voiceover carefully explains from a scientific perspective what is happening to Gerald’s body as he approaches death.

I also learned that this summer the BBC will be broadcasting a show featuring Sir Terry Pratchett, the novelist best known for his Discworld series, investigating what is involved in assisted suicide. Again, according to the Daily Mail,

The novelist, who has Alzheimer’s, will be seen at the bedside of a 71-year-old motor neurone disease sufferer until he succumbs to the cocktail of drugs he has taken to end his life at the Swiss clinic.

The BBC’s press release notes that

Terry has often spoken of the fact that he may choose a medically assisted death when his condition progresses, so his priority was to look at what this decision would really mean. What would it feel like to make the final decision to die? What would it feel like to visit Dignitas? What would it be like to be present when the moment of death came?

Terry Pratchett: Choosing To Die looks at all of these issues in some detail, but in no way does he wave a one-sided flag for assisted death.

I’m not sure what to make of the Daily Mail’s last comment:

The programme, called Terry Pratchett: Choosing to Die, will be the first time terrestrial television has shown a death by suicide.

since I don’t know what is meant by “terrestrial television.” I do know that an assisted suicide has been shown on TV before, in PBS’s Frontline 2007 broadcast of The Suicide Tourist, which showed the journey by a 59-year-old man, Chris Ewert, suffering from rapidly progressing ALS (Lou Gehring’s disease) to Switzerland where he legally commits suicide in an apartment maintained by Dignitas, at the time, and possibly still, “the only organization in Switzerland that will help foreigners.”And yes, you do see Ewert drink the cocktail and the Dignitas assistant tell his wife, who has been present during the entire process, that her husband “is gone.”

The whole program is available to watch online at Frontline. There is also an extensive list of links on the topic of assisted suicide at the site.

Of Spectres and Death and Will

It’s my father’s spontaneous two smiles that I find so astounding, even now, nearly a month after his death. I had not seen him smile in years, nor had my mother.

If you’ve read Philip Pullman’s His Dark Materials, you’ll remember the Spectres, those “children of the abyss” who steal from their victims any “conscious and informed interest in the world.” Those attacked by Spectres don’t always die immediately; some linger, but, as one child tells another,”‘it’s like they been eaten from the inside. You look in they eyes, you see the back of they heads. Ain nothing there.'”

If you’ve ever been around someone with Alzheimer’s or dementia, you’ll know why each time I visited my dad the Spectres came to mind. He would respond to questions, but he never asked any. He’d appear to listen to conversation, but never initiated one. His mood was flat. He was there, that’s all.

So where did those two smiles come from? Where had he been and how and why did he make one final and brief appearance as the self he once was? Less than 24 hours before his blood pressure had been very low, something like 60/40, pulse slow, temperature dropping, and he seemed deeply asleep or unconscious.

His vital signs didn’t improve the next day, but certainly his level of consciousness did.

My father’s hospice nurses, as well as several friends I talked to later, were not surprised by this. It is far from rare for the terminally ill to experience a final period of lucidity, and yet I can’t seem to find discussions of this phenomenon that amount to more than anecdotes.

I’d think neurologists would be intrigued by spontaneous but brief returns to lucidity among those whose brains are damaged. Arguments that near-death experiences (NDE) have more to do with oxygen deprivation than with life after death are easy to find, but if I studied the brain, the question I’d ask is what happens to the dying brain that allows the mind to return before it is finally extinguished.

Could there be a way to effect this restoration that doesn’t require dying?

I finally found a term in limited use relating to these final returns to lucidity: nearing-death awareness (NDA), introduced in 1992 by two hospice nurses, Maggie Callanan and Margaret Kelly, in their book, Final Gifts: Understanding the Special Awareness, Needs, and Communications of the Dying. They describe two sets of experiences. One focus is the similarities of NDA and NDE. Some of their patients have had experiences in their last hours that are consistent with the narratives of NDE.

Callanan and Kelly also describe unexpected spells of lucidity among the dying, including behaviors such as seemingly choosing their time of death or delaying it until a relative arrives.

It’s these efforts of will that show an attachment to this life rather than anticipation of an afterlife that interest me.

Before my father died, I’d wonder why people were allowed to relieve their terminally ill, much beloved pets of a prolonged descent into death, but were prohibited from extending the same mercy to their human loved ones.

While I still think that a fully conscious, terminally ill person should be able to ask for assistance in ending her own life, I see now that even were it permitted, I could not choose for my human family members the active euthanasia I might allow a semi-conscious pet.

So often you hear of an elderly and sick pet just disappearing, going off alone to die. Mammals must have near-death awareness, most likely keener than ours.

But do they ever exert their will to stay alive until they know their children are with their mate, or until they can say goodbye to someone they love very much?

At its end, all my father had left in life was his death — and a little bit of will.

He summoned his strength and vanquished the Spectres at last. He exerted his will. He was at last again Joe in all his Joe-ness.

Then he allowed Death to arrive.

I didn’t know dying was such hard work

Ten days ago my father died. It wasn’t like what I expected. I had no idea that dying was such hard work. If I’d thought about it before, I guess it was in terms like sudden or not, violent or not, painful or not. But not as work.

Now I suspect it must be like moving house: moving out that is, and no one mistakes moving in for moving out. I’ve moved out of apartments in an afternoon. But the last move I made was from a house I’d lived in twenty years, long after having moved into a new one. There was no need to hurry and it took months.

We shut down that house room by room. There was an initial thrust: big packing campaign, moving boxes, then the furniture, and when the beds were moved we no longer slept in the old house. But a year would pass before we left it for the last time.

We’d start and we’d stop. Fix this, tinker with that til there was less and less to do.

We left a few things behind — not unimportant ones, either, but personal items, things that made the house still ours in ways that holding the deed and keys did not.

Gradually there was less and less that needed doing.

A final haul out of trash.

Shutting off the power.

Turning off the water.

Locking the door one last time, turning over the keys, and knowing, finally, we would never return.

I don’t know what his death certificate will list as my father’s cause of death. He had spent years dying of Parkinson’s, dementia, Alzheimer’s. He’d outlived both his body and his mind, and about a month ago went through a period when he declared he was dead. Not, mind you, that he wanted to die or was dying, but that he was dead. He stopped eating. But then he started again.

Then he stopped again, and this time he could or would not drink. He seemed to have forgotten how to or was no longer able to swallow. Two weeks ago the hospice leader told me if I were coming, to come now. I left immediately.

I thought he would die on Tuesday. All day my father’s blood pressure, pulse, and temperature dropped. My mother and I talked to him, sang to him, and read to him since it is thought that hearing is the last sense to shut down. Once or twice when the nurse shifted him his eyes opened and stayed open for about ten minutes, but there was no one at home.

It seemed my father was beyond the point of return, but in the evening his vitals near-normalized, and the hospice nurse told me that based on her six years of waiting, she felt my father would live through the night. She promised to call at the slightest indication she had been mistaken.

But she wasn’t wrong. And this is where it gets interesting.

When we arrived Wednesday, my father was back. His eyes were open and he was at home, and that day, as I talked to him, I saw in those eyes all the subtle changes that listening brings, and he now and then would try to raise an eyebrow or forehead muscle. I was certain he could not only hear but understand us as we told him that he didn’t have to keep fighting, that no one had tried harder, that he had earned his rest, that he would not be letting us down if he wanted to go, that what we wanted was for him to be free of pain and fatigue and loneliness.

As much as I believed he was conscious that day for several hours, maybe later I would have convinced myself that I was wrong, had it not been for the arrival of his longtime caregiver come-to-be best friend, Mercedes.

Into this room of hushed and serious talk comes Mercedes, loudly and clearly declaring herself: Adams, are you still here? Don’t you know the angels are waiting on you? They’ve got their arms wide open and here you are, still in this bed!

My father smiled. He smiled a wide, uncomplicated, boyish smile with his mouth and with his eyes. Mercedes said something else amusing. And he smiled again. Everyone saw him. Twice.

Then Mercedes wanted to know where my older brother was, and hearing he was on the road, sighed that didn’t we know my dad was waiting on him?

I believe that by then my father’s vision was like a newborn’s. He could see faces but nothing else, and so when I got my brother on the cell phone, maybe he thought the voice he heard was coming from across the room.

After that call once more we told my father he’d earned a long and peaceful rest. His work was done. The angels and all those he had lost were waiting. It was time to move on. Toward dawn he died.