What I want is to die on my own timetable and in my own nonviolent way.
May 15, 2015 1:09 PM Subscribe
The Last Day of Her Life. When Cornell psychology professor Sandy Bem found out she had Alzheimer’s, she resolved that before the disease stole her mind, she would kill herself. The question was, when?
Professor Bem's obituary was previously covered on MeFi.
Professor Bem's obituary was previously covered on MeFi.
There are other concepts of identity and personhood, other than a memory-based identity. I think this is very interesting. I plan to hang around post-dementia, if I am so lucky to reach that stage.
posted by ClaudiaCenter at 1:25 PM on May 15, 2015 [8 favorites]
posted by ClaudiaCenter at 1:25 PM on May 15, 2015 [8 favorites]
I read this earlier today and I was incredibly moved both by Professor Bem's courage and also that of her loved ones in allowing her to fulfill her wishes concerning the details of her death. Should I ever be diagnosed with Alzheimer's, I would much rather be in charge of my death the way she was, than be forced to live until my body gave out physically, lost and alone, surrounded by people I no longer know.
posted by longdaysjourney at 1:32 PM on May 15, 2015 [12 favorites]
posted by longdaysjourney at 1:32 PM on May 15, 2015 [12 favorites]
I have an aunt suffered from alcohol related dementia for around 20 years before her body gave out. I wasn’t allowed near her as a kid, and most of my memories when I got older were of this oddly blank woman that got passed around the family but was mostly ignored. It’s part of the reason why my mother is adamant that she’ll kill herself before she gets to that state. She’s asked that I let her do this.
Around December, my mother finally admitted she’d started having memory problems. Little things, mostly. I’ve been planning my wedding, and dealing with the parts she’s responsible for (and wants to be responsible for) has been interesting. Lots of repeating the same sorts of things. She’s asked me to bring up every single time it happens and to write it down for her to help her keep track – that’s the part that’s the hardest.
This was very difficult to read.
posted by dinty_moore at 1:40 PM on May 15, 2015 [17 favorites]
Around December, my mother finally admitted she’d started having memory problems. Little things, mostly. I’ve been planning my wedding, and dealing with the parts she’s responsible for (and wants to be responsible for) has been interesting. Lots of repeating the same sorts of things. She’s asked me to bring up every single time it happens and to write it down for her to help her keep track – that’s the part that’s the hardest.
This was very difficult to read.
posted by dinty_moore at 1:40 PM on May 15, 2015 [17 favorites]
Jesus Christ. I already read the cancer piece this week and have only been half able to think about anything else since; it is going to take me a while to work up to finishing this one, even though I know I should. Too close to home and too close to decisions people I love are going to have to make.
posted by brennen at 2:00 PM on May 15, 2015 [4 favorites]
posted by brennen at 2:00 PM on May 15, 2015 [4 favorites]
My family was worried about my father, who had his own apartment in an assisted living complex. We agreed that I should visit, and spend two weeks on his couch observing him.
What I discovered was this amazingly detailed coping system that he had constructed, presumably earlier on in his decline. In his neat printed hand he had created cue cards, and even laminated the ones that would be near the sink or shower. He used multiple colors of Sharpie pens, there were underlines for emphasis, and numbered outlines followed by more descriptive notations.
For instance he had posted in the bathroom a detailed set of instructions for how to take a shower, starting with, "1) Lift one foot and place into the tub." Near the phone, he had charts with pictures of each child affixed, a summary of where they lived, what schools they attended, and where they worked. There were scripts written for the most routine phone calls, with notations like, "Hi! How are you?, (smile while talking.)"
To get from the bed to the bathroom, he placed a series of furniture landmarks with handholds marked and labeled, numbered in sequence with arrows pointing to the next. The positions for each piece of furniture was marked with tape on the floor.
What was the family to do with this new information? We knew he should be moved to a nursing home, but he would hate that. He was 86 years old, with prostrate cancer that was silently progressing, untreated in a calculated race to the finish.
We decided to let him go on like this until some kind of consequences precipitated. He would make his way to the local American Legion, take public transportation around town to "volunteer" at the VA, basically just arriving saying hello and leaving.
He had his wedding ring and wallet taken from him in a mugging, but he was unharmed. We bought him a new ring. Eventually he attempted an interstate Amtrak voyage, fell getting off the train, and we had some trouble locating which hospital he had ended up in. So that was when we decided to finally change his circumstances.
He had gone on in his dementia for over two years, and when he went into the nursing home, he was angry and bitter, his life had ended or worse became torturous to him. The prostrate cancer caught up with him shortly thereafter, and he died with family in the room.
We knew he was in jeopardy, but he had some adventures, and despite the cognitive decline he would still occasionally come up with some old-timey joking remark we hadn't heard before.
So I guess my point is, that preparing for his decline with all his little assistive props and cheats, had given him a few more years to wing it, and he had some fun or at least the satisfaction of achieving self direction. He could have had serious problems at any time during that period, but being put away was the worst thing that he ever experienced, and at least that was delayed.
He was a hollow shell, but at least he was a semi-functioning hollow shell of himself.
posted by StickyCarpet at 2:08 PM on May 15, 2015 [105 favorites]
What I discovered was this amazingly detailed coping system that he had constructed, presumably earlier on in his decline. In his neat printed hand he had created cue cards, and even laminated the ones that would be near the sink or shower. He used multiple colors of Sharpie pens, there were underlines for emphasis, and numbered outlines followed by more descriptive notations.
For instance he had posted in the bathroom a detailed set of instructions for how to take a shower, starting with, "1) Lift one foot and place into the tub." Near the phone, he had charts with pictures of each child affixed, a summary of where they lived, what schools they attended, and where they worked. There were scripts written for the most routine phone calls, with notations like, "Hi! How are you?, (smile while talking.)"
To get from the bed to the bathroom, he placed a series of furniture landmarks with handholds marked and labeled, numbered in sequence with arrows pointing to the next. The positions for each piece of furniture was marked with tape on the floor.
What was the family to do with this new information? We knew he should be moved to a nursing home, but he would hate that. He was 86 years old, with prostrate cancer that was silently progressing, untreated in a calculated race to the finish.
We decided to let him go on like this until some kind of consequences precipitated. He would make his way to the local American Legion, take public transportation around town to "volunteer" at the VA, basically just arriving saying hello and leaving.
He had his wedding ring and wallet taken from him in a mugging, but he was unharmed. We bought him a new ring. Eventually he attempted an interstate Amtrak voyage, fell getting off the train, and we had some trouble locating which hospital he had ended up in. So that was when we decided to finally change his circumstances.
He had gone on in his dementia for over two years, and when he went into the nursing home, he was angry and bitter, his life had ended or worse became torturous to him. The prostrate cancer caught up with him shortly thereafter, and he died with family in the room.
We knew he was in jeopardy, but he had some adventures, and despite the cognitive decline he would still occasionally come up with some old-timey joking remark we hadn't heard before.
So I guess my point is, that preparing for his decline with all his little assistive props and cheats, had given him a few more years to wing it, and he had some fun or at least the satisfaction of achieving self direction. He could have had serious problems at any time during that period, but being put away was the worst thing that he ever experienced, and at least that was delayed.
He was a hollow shell, but at least he was a semi-functioning hollow shell of himself.
posted by StickyCarpet at 2:08 PM on May 15, 2015 [105 favorites]
I'm weeping, not just for Sandy, and not just for our great grandmother Margaret, or my aunt Opal, who died a shell of her former glory, and not just for all of us who have had to deal with the decline of someone we know...but I weep that we live in a culture so afraid of death that people cannot get medical care/drugs/whatever legally.
I'm terrified of Alzheimers. Every time I can't put a name to a face, or forget a face that I should know, or can't remember a word...even normal memory loss terrifies me, lest it be the first sign of the end.
posted by dejah420 at 2:21 PM on May 15, 2015 [15 favorites]
I'm terrified of Alzheimers. Every time I can't put a name to a face, or forget a face that I should know, or can't remember a word...even normal memory loss terrifies me, lest it be the first sign of the end.
posted by dejah420 at 2:21 PM on May 15, 2015 [15 favorites]
Thanks for posting this. It's exactly what I'd like to do if I develop dementia. Just didn't know how to do it. What a gift to die, to the extent possible, on your own terms and in a relatively gentle way.
posted by Bella Donna at 2:32 PM on May 15, 2015 [3 favorites]
posted by Bella Donna at 2:32 PM on May 15, 2015 [3 favorites]
This was very well written and poignant. No one mentions the lonliness Alzheimer's brings. My Mom wold say, no one speaks to you here, or I haven't eaten all day. I thought this was drama, until I realized she couldn't remember these things. I cared for her until I was endangered. Where she was, they were in a dayroom with projects, TV, snacks, activities, until they went to bed. She was safe, and beloved, I visited and she always asked me the same three questions, "How old are you now? How old am I? How are the girls?" Then she would ask them four more times or so taking about 45 minutes in roundelay. She had a lot of life left in her, but she slipped out on them, suddenly, one evening before bed. I was out of my house for a half hour or so, when I came back in, there were five calls in rapid succession from there. When I called she had passed away. They told me they were trying to get hold of me, to countermand the DNR orders. So she and I were lucky to have it go as it did. She had dinner, joked around, asked for a glass of water, and then passed quietly being walked to her room. It would have been impossible to not suspend the DNR if they had reached me.
I am glad this woman made a plan for herself, my Mom felt she was in prison, her only crime was to be less of herself.
posted by Oyéah at 2:40 PM on May 15, 2015 [13 favorites]
I am glad this woman made a plan for herself, my Mom felt she was in prison, her only crime was to be less of herself.
posted by Oyéah at 2:40 PM on May 15, 2015 [13 favorites]
That is an amazing story you told, StickyCarpet. The idea of your father painstakingly writing out instructions to himself is so sad and human. My mother had similar strategies when she was experiencing the earlier stages of dementia.
I read this story this morning. Reading about the daughter's reluctance to let her mother go is the part that really hit home for me. My mother has very late-stage Alzheimer's and has been bed-ridden and totally helpless for two years. My brother and I have made agreements about her care for years, but he has not been able to follow through; he's been unable to agree to withhold life-prolonging care when she would die without it. Although she can barely swallow now, he's talking about rethinking our agreement to not insert a feeding tube. We're lucky she's in a pretty good care facility and it's all covered by her amazing insurance, but that's the only good thing. A plan to die, or a plan to not intervene can only work if everybody is on board. Sadly, my brother is not able to let her go.
posted by feste at 2:48 PM on May 15, 2015 [9 favorites]
I read this story this morning. Reading about the daughter's reluctance to let her mother go is the part that really hit home for me. My mother has very late-stage Alzheimer's and has been bed-ridden and totally helpless for two years. My brother and I have made agreements about her care for years, but he has not been able to follow through; he's been unable to agree to withhold life-prolonging care when she would die without it. Although she can barely swallow now, he's talking about rethinking our agreement to not insert a feeding tube. We're lucky she's in a pretty good care facility and it's all covered by her amazing insurance, but that's the only good thing. A plan to die, or a plan to not intervene can only work if everybody is on board. Sadly, my brother is not able to let her go.
posted by feste at 2:48 PM on May 15, 2015 [9 favorites]
A friend of the family had a fatal brain cancer but decided to go the experimental treatment route. He told me several times as his cognitive abilities degenerated that he had blown it and should have committed suicide while it was still an option'
posted by Tell Me No Lies at 2:57 PM on May 15, 2015 [7 favorites]
posted by Tell Me No Lies at 2:57 PM on May 15, 2015 [7 favorites]
This really hits home. My father was diagnosed with GBM (brain cancer) in January, and he's unlikely to survive the summer. Every day his brain slips away piece by piece. It's terrible. If something like this is my fate, I hope I have the strength Sandy showed, but I like to think I'd do it earlier, while things were still truly in my own hands.
posted by amorphatist at 2:58 PM on May 15, 2015 [3 favorites]
posted by amorphatist at 2:58 PM on May 15, 2015 [3 favorites]
I don't entirely know what to say, but thank you for posting this; I'm sure it would be passed around sotto voce, among the staff when I go to work.
I see this every day. Not the advance planning of someone who knows, in advance, how to take care of this. I wish we could have these conversations. Instead, I get to have the conversations that the medical directors never have this families: yes, Mom has dementia. This is what dementia is. This is how we can tell. Here is a healthy brain. Here is what your mother's brain looks like. I had one lady who, when I said, 'We need to talk about your relative's memory loss' she didn't understand. She'd been told 'dementia' but her health literacy relatively low, and her denial very strong, and no one had sat down with her and explained the prognosis.
When I started this job, a new graduate who had been looking for nine months for something, anything, I went from my school's rotations on the wards, where I'd learned to have conversations about imminent death. No one taught me how to have conversations about the slowest, but inevitable deaths. They say I'm good at it, good at talking to families. What I'm not good at is taking away the medications we have available for the psychosis that happens to some people, depending on the type of dementia -- or other unexpected end of life issues, like metastatic cancer spread to the brain -- that they have. Federal regulations for nursing homes now deduct score-card points for using them -- they might shorten life. It's perverse quantity over quality, and it means I go home burnt out, occasionally injured, and frequently late.
Some people descend quietly, into roles like 'being a grandmother' in the article, or with a tendency to repeat calm, habitual activities and seem to have a calm, Zen, peaceful type of confusion. Then I have WWII vets who think the Germans are poisoning his food. I have patients I don't see with any pens in my pockets. We can argue about identity fine for the first type, when it becomes an argument of them not being themselves but still being safe and not unhappy, but the immense suffering I see, sometimes inexpressible, is awful. It seems to be a crapshoot what you'll be left with.
About three months into this job, one of the social workers said to me, quite up-front, "What is your plan?"
"My plan?"
"For if this happens to you."
We both had one. Turns out, most of us do.
posted by cobaltnine at 3:04 PM on May 15, 2015 [33 favorites]
I see this every day. Not the advance planning of someone who knows, in advance, how to take care of this. I wish we could have these conversations. Instead, I get to have the conversations that the medical directors never have this families: yes, Mom has dementia. This is what dementia is. This is how we can tell. Here is a healthy brain. Here is what your mother's brain looks like. I had one lady who, when I said, 'We need to talk about your relative's memory loss' she didn't understand. She'd been told 'dementia' but her health literacy relatively low, and her denial very strong, and no one had sat down with her and explained the prognosis.
When I started this job, a new graduate who had been looking for nine months for something, anything, I went from my school's rotations on the wards, where I'd learned to have conversations about imminent death. No one taught me how to have conversations about the slowest, but inevitable deaths. They say I'm good at it, good at talking to families. What I'm not good at is taking away the medications we have available for the psychosis that happens to some people, depending on the type of dementia -- or other unexpected end of life issues, like metastatic cancer spread to the brain -- that they have. Federal regulations for nursing homes now deduct score-card points for using them -- they might shorten life. It's perverse quantity over quality, and it means I go home burnt out, occasionally injured, and frequently late.
Some people descend quietly, into roles like 'being a grandmother' in the article, or with a tendency to repeat calm, habitual activities and seem to have a calm, Zen, peaceful type of confusion. Then I have WWII vets who think the Germans are poisoning his food. I have patients I don't see with any pens in my pockets. We can argue about identity fine for the first type, when it becomes an argument of them not being themselves but still being safe and not unhappy, but the immense suffering I see, sometimes inexpressible, is awful. It seems to be a crapshoot what you'll be left with.
About three months into this job, one of the social workers said to me, quite up-front, "What is your plan?"
"My plan?"
"For if this happens to you."
We both had one. Turns out, most of us do.
posted by cobaltnine at 3:04 PM on May 15, 2015 [33 favorites]
(I wrote out this story and then realized that there are a fair number of comments above from people who are currently caring for people with dementia or whose lives it is currently touching directly - I considered deleting it but instead I'll just add the warning that it is upsetting and will probably be hard to read.)
My grandmother died, brutally, of Alzheimer's. Her death was so ugly that there is simply no way to make sense of it. Late-stage dementia is not just memory loss, not even remotely. It's waking up in the night and wandering around the hallways, lost and terrified, your own home transformed into a confusing maze. It's being taken to a nursing home by your family and spending days sobbing helplessly and staring out the window at the street below, because you believe your children left you there because they're angry at you, and when they come back, being unable to comprehend the reasons why they won't forgive you and let you come home. It's accidentally confusing your son with your dead husband and sexually propositioning him in front of your grandchildren. It's losing control of your bowels and feeling terrified and violated every night when complete strangers forcibly strip you and put you in a diaper, but when you beg for help from your family they just act embarrassed and look away. It's getting to the point where you don't only fail to recognize people, and objects, but the different parts of your own body, until even the sensation of someone touching your hand is inexplicably frightening, because you no longer really understand the concepts of 'touch,' or 'hand.' It is ending your life by spending years trapped in a nightmare of your own brain's devising, and what makes it truly, existentially terrifying are the little slivers of your personality the disease leaves untouched, as though it's being careful to preserve just enough of you to ensure that you know that you're going through hell.
My mother, who cared for my grandmother before she died, has always sworn that she will commit suicide if she develops Alzheimer's, but has asked us to promise us that we'll kill her instead of sending her to a nursing home if she doesn't manage to do so successfully in time. I think that I would do it - but at the same time, I know that my grandmother swore the exact same thing, and also tried to extract the same promise from her own children, who gave it...and neither she nor they were able to carry it out. That's yet another way that the disease is so insidious - the way it sprinkles in good days up until the very end, and leaves just enough flashes of lucidity that you can't pretend that the person you love isn't 'there' anymore. They are there; they're just terrified, and suffering, and unable to comprehend what's happening to them.
This article, for all that it was difficult to read, gave me a lot of comfort. I hope it can provide a model for my own family, should it come to that. They were all very strong and brave.
posted by pretentious illiterate at 3:06 PM on May 15, 2015 [75 favorites]
My grandmother died, brutally, of Alzheimer's. Her death was so ugly that there is simply no way to make sense of it. Late-stage dementia is not just memory loss, not even remotely. It's waking up in the night and wandering around the hallways, lost and terrified, your own home transformed into a confusing maze. It's being taken to a nursing home by your family and spending days sobbing helplessly and staring out the window at the street below, because you believe your children left you there because they're angry at you, and when they come back, being unable to comprehend the reasons why they won't forgive you and let you come home. It's accidentally confusing your son with your dead husband and sexually propositioning him in front of your grandchildren. It's losing control of your bowels and feeling terrified and violated every night when complete strangers forcibly strip you and put you in a diaper, but when you beg for help from your family they just act embarrassed and look away. It's getting to the point where you don't only fail to recognize people, and objects, but the different parts of your own body, until even the sensation of someone touching your hand is inexplicably frightening, because you no longer really understand the concepts of 'touch,' or 'hand.' It is ending your life by spending years trapped in a nightmare of your own brain's devising, and what makes it truly, existentially terrifying are the little slivers of your personality the disease leaves untouched, as though it's being careful to preserve just enough of you to ensure that you know that you're going through hell.
My mother, who cared for my grandmother before she died, has always sworn that she will commit suicide if she develops Alzheimer's, but has asked us to promise us that we'll kill her instead of sending her to a nursing home if she doesn't manage to do so successfully in time. I think that I would do it - but at the same time, I know that my grandmother swore the exact same thing, and also tried to extract the same promise from her own children, who gave it...and neither she nor they were able to carry it out. That's yet another way that the disease is so insidious - the way it sprinkles in good days up until the very end, and leaves just enough flashes of lucidity that you can't pretend that the person you love isn't 'there' anymore. They are there; they're just terrified, and suffering, and unable to comprehend what's happening to them.
This article, for all that it was difficult to read, gave me a lot of comfort. I hope it can provide a model for my own family, should it come to that. They were all very strong and brave.
posted by pretentious illiterate at 3:06 PM on May 15, 2015 [75 favorites]
Dad died before mom, surprisingly. And for mom, dad's death was always somewhere between a month to six months ago. For three years.
posted by oflinkey at 3:52 PM on May 15, 2015 [3 favorites]
posted by oflinkey at 3:52 PM on May 15, 2015 [3 favorites]
Dementia you evil fucker, you'll never take me alive!!!!
posted by humanfont at 3:58 PM on May 15, 2015 [3 favorites]
posted by humanfont at 3:58 PM on May 15, 2015 [3 favorites]
I hadn't seen my grandmother for years before she died. I don't regret that at all. She wouldn't have known me, and my memories of her are all when she was vibrant and whole. It's because of my great love for her that I wish she had passed sooner.
posted by Ruki at 5:08 PM on May 15, 2015 [2 favorites]
posted by Ruki at 5:08 PM on May 15, 2015 [2 favorites]
oflinkey - that is a truly amazing, and affecting distillation.
posted by hwestiii at 5:09 PM on May 15, 2015
posted by hwestiii at 5:09 PM on May 15, 2015
Remind me again why we let our fellow humans suffer in ways that we'd never allow for a cat or dog.
posted by dr_dank at 5:40 PM on May 15, 2015 [1 favorite]
posted by dr_dank at 5:40 PM on May 15, 2015 [1 favorite]
Remind me again why we let our fellow humans suffer in ways that we'd never allow for a cat or dog.
I am a fervent believer in end of life choices, but my dog has no agency. It is entirely my choice and responsibility.
It is significantly more complicated when consent becomes involved and coercion is feasible.
posted by Lyn Never at 5:53 PM on May 15, 2015 [2 favorites]
I am a fervent believer in end of life choices, but my dog has no agency. It is entirely my choice and responsibility.
It is significantly more complicated when consent becomes involved and coercion is feasible.
posted by Lyn Never at 5:53 PM on May 15, 2015 [2 favorites]
This is why I have a bottle of pills marked "If you can't remember what these are for, take ALL of them."
posted by sourcequench at 6:00 PM on May 15, 2015 [29 favorites]
posted by sourcequench at 6:00 PM on May 15, 2015 [29 favorites]
sourcequench, you're brilliant.
"A plan to die, or a plan to not intervene can only work if everybody is on board. Sadly, my brother is not able to let her go."
Sums up my family's issues in a nutshell. I don't know how my mom and I will work that out when she's a "cling at all costs" lifer and I'm a "kill me now" and we fundamentally disagree. What happens if one of loses our shit first--and yes, dementia runs rampant on both ends of the gene pool. If something happens to me, she'll know my wishes and keep me around forever just in case there's hope, and if something happens to her I'll want to let her go and know that she would want to cling forever. I think the only way she could let my dad die was because it would have bankrupted her to keep him alive in horrible condition naturally. Gaaaaaaaaaaaaaah.
posted by jenfullmoon at 6:27 PM on May 15, 2015 [1 favorite]
"A plan to die, or a plan to not intervene can only work if everybody is on board. Sadly, my brother is not able to let her go."
Sums up my family's issues in a nutshell. I don't know how my mom and I will work that out when she's a "cling at all costs" lifer and I'm a "kill me now" and we fundamentally disagree. What happens if one of loses our shit first--and yes, dementia runs rampant on both ends of the gene pool. If something happens to me, she'll know my wishes and keep me around forever just in case there's hope, and if something happens to her I'll want to let her go and know that she would want to cling forever. I think the only way she could let my dad die was because it would have bankrupted her to keep him alive in horrible condition naturally. Gaaaaaaaaaaaaaah.
posted by jenfullmoon at 6:27 PM on May 15, 2015 [1 favorite]
My mom didn't have Alzheimer's, but she had Parkinson's-associated dementia. Delusions, confusions, dream-like hallucinations. However, she clung onto enough core identity to stop eating and drinking when she recognized that she would sooner than later have to be tube-fed.
I had been coming to see her, and taking her out to eat or shop, once a week for ten years, so the people in the skilled-nursing center knew me. I felt guilty because once a week was all I could manage and keep my sanity. However, it's surprisingly rare that family members come and visit, I was told.
The health-care power of attorney was in my sister's name, not mine, because she and my mother agreed that she was the right one.
But when they realized she had stopped eating and drinking, and that she was dehydrated and going downhill, the doctor called me instead. And asked me if they should take her to the hospital. And I said no. And he said they would start her on hospice care in that case. I sat with her while she died on her own time.
Some of that was just luck, and good sense on the part of the nursing center staff. But the doctor called me instead of my sister because he knew me. He knew me.
In my Ph.D. program, one of our students did her research in a hospital. She found that people who have visitors get better care than people who don't. Apparently it wasn't fear, it was just a perception that patients with visitors were connected to society in some meaningful way.
I know people who have dementia are scary and upsetting to be around. Visit them anyway. And chat with the staff when you do.
posted by Peach at 6:55 PM on May 15, 2015 [12 favorites]
I had been coming to see her, and taking her out to eat or shop, once a week for ten years, so the people in the skilled-nursing center knew me. I felt guilty because once a week was all I could manage and keep my sanity. However, it's surprisingly rare that family members come and visit, I was told.
The health-care power of attorney was in my sister's name, not mine, because she and my mother agreed that she was the right one.
But when they realized she had stopped eating and drinking, and that she was dehydrated and going downhill, the doctor called me instead. And asked me if they should take her to the hospital. And I said no. And he said they would start her on hospice care in that case. I sat with her while she died on her own time.
Some of that was just luck, and good sense on the part of the nursing center staff. But the doctor called me instead of my sister because he knew me. He knew me.
In my Ph.D. program, one of our students did her research in a hospital. She found that people who have visitors get better care than people who don't. Apparently it wasn't fear, it was just a perception that patients with visitors were connected to society in some meaningful way.
I know people who have dementia are scary and upsetting to be around. Visit them anyway. And chat with the staff when you do.
posted by Peach at 6:55 PM on May 15, 2015 [12 favorites]
The staff was very upset about Mom's passing, she passed with the night crew. So, I came back the next day to talk with her regular caregivers, and I brought a lot of pastry. It had meaning for me to thank them, and sustain them a bit for a change.
posted by Oyéah at 7:08 PM on May 15, 2015 [4 favorites]
posted by Oyéah at 7:08 PM on May 15, 2015 [4 favorites]
If you can't remember what these are for, take ALL of them
You run the risk of taking them too soon, when you still have some good days ahead of you, but on the whole, I like those odds. I mean, you run the risk of getting hit by a bus while you still have some good days ahead of you too. I hope I "get around to" preparing a bottle like this while I still can. Thanks for an excellent idea!
posted by spacewrench at 7:20 PM on May 15, 2015
You run the risk of taking them too soon, when you still have some good days ahead of you, but on the whole, I like those odds. I mean, you run the risk of getting hit by a bus while you still have some good days ahead of you too. I hope I "get around to" preparing a bottle like this while I still can. Thanks for an excellent idea!
posted by spacewrench at 7:20 PM on May 15, 2015
> you run the risk of getting hit by a bus while you still have some good days ahead of you too [...]
I kind of don't want the bus driver to have that on his/her conscience, if it comes to that, TYVM. The manufacturers of Nembutal can fuckin' deal.
posted by sourcequench at 7:37 PM on May 15, 2015 [1 favorite]
I kind of don't want the bus driver to have that on his/her conscience, if it comes to that, TYVM. The manufacturers of Nembutal can fuckin' deal.
posted by sourcequench at 7:37 PM on May 15, 2015 [1 favorite]
The "good days ahead" framing feels like a weird inverse sunk cost fallacy to me (though I am an atheist and that may matter). I just feel like yes, I might have 30 days out of the next 200 when I am not in much pain or not terrified in the hostage situation that my life is on most days, but if I'm going to remember (or suffer the physical and mental after effects of) those days, I think "good" is highly subjective.
posted by Lyn Never at 8:15 PM on May 15, 2015 [6 favorites]
posted by Lyn Never at 8:15 PM on May 15, 2015 [6 favorites]
I really appreciated this distinction:
Ronald Dworkin, an influential legal scholar and the author of “Life’s Dominion: An Argument About Abortion, Euthanasia and Individual Freedom,” wrote about a kind of hierarchy of needs for people in Sandy’s situation, who want their autonomy to be respected even as disease changes the essence of who they are and what autonomy means. He differentiated between “critical interests” (personal goals and desires that make life worth living) and “experiential interests” (enjoying listening to music, for instance, or eating chocolate ice cream). Sandy was appreciating her experiential interests — playing with Felix and working in her garden — but her critical interests were far more sophisticated and were moving out of her reach. Critical interests should take priority when making end-of-life choices on behalf of someone whose changed state renders her less capable of deciding on her own, Dworkin wrote, because critical interests reflect your true identity.
It articulates a distinction I've been puzzling over for a long time. I remember reading an anti-euthanasia argument from a disability rights perspective, so, so long ago, like maybe as long ago as 20 years, arguing that euthanasia should never be accepted because you couldn't know what was going on inside a person. Perhaps that person can't communicate or feed herself, but maybe she's really enjoying the feel of the clean sheets on her skin. I remember thinking at the time that enjoying clean sheets was not really enough to hang a whole life on—or that, at least, for some people it might not be.
I've also been dealing, since last July, with a significant deterioration in my own functioning due to a worsening of a chronic condition. I'm a much less useful person than I was a year ago: I can't be counted on to help around the house, or do the shopping, or to always meet deadlines. I almost certainly am not up to evening activities. But I have been enjoying a lot of "experiential interests": reading in the recliner with my dogs in my lap, hanging out with my kids watching TV shows and movies. And, oddly, I've been having a very rich period in many of my "critical interests," reading, writing, and thinking. I've been very productive in my writing. I've also been enjoying an excellent sex life with my partner, which I would call both experiential and critical. It's like what I've lost, for now at least, is a kind of functioning that isn't necessarily vital to me. Like there's a donut hole.
This article gave me useful language for thinking about this. So that's cool.
I remember Sandra Bem. I was a women's studies major in college in the 80s, so she was pretty unavoidable. As a tie-in to the current BerenSTAIN bears thread, I remember knowing people who had thought for a long time that her last name was Bern, until it came up in a class discussion and they heard people saying Bem.
posted by not that girl at 8:27 PM on May 15, 2015 [6 favorites]
Ronald Dworkin, an influential legal scholar and the author of “Life’s Dominion: An Argument About Abortion, Euthanasia and Individual Freedom,” wrote about a kind of hierarchy of needs for people in Sandy’s situation, who want their autonomy to be respected even as disease changes the essence of who they are and what autonomy means. He differentiated between “critical interests” (personal goals and desires that make life worth living) and “experiential interests” (enjoying listening to music, for instance, or eating chocolate ice cream). Sandy was appreciating her experiential interests — playing with Felix and working in her garden — but her critical interests were far more sophisticated and were moving out of her reach. Critical interests should take priority when making end-of-life choices on behalf of someone whose changed state renders her less capable of deciding on her own, Dworkin wrote, because critical interests reflect your true identity.
It articulates a distinction I've been puzzling over for a long time. I remember reading an anti-euthanasia argument from a disability rights perspective, so, so long ago, like maybe as long ago as 20 years, arguing that euthanasia should never be accepted because you couldn't know what was going on inside a person. Perhaps that person can't communicate or feed herself, but maybe she's really enjoying the feel of the clean sheets on her skin. I remember thinking at the time that enjoying clean sheets was not really enough to hang a whole life on—or that, at least, for some people it might not be.
I've also been dealing, since last July, with a significant deterioration in my own functioning due to a worsening of a chronic condition. I'm a much less useful person than I was a year ago: I can't be counted on to help around the house, or do the shopping, or to always meet deadlines. I almost certainly am not up to evening activities. But I have been enjoying a lot of "experiential interests": reading in the recliner with my dogs in my lap, hanging out with my kids watching TV shows and movies. And, oddly, I've been having a very rich period in many of my "critical interests," reading, writing, and thinking. I've been very productive in my writing. I've also been enjoying an excellent sex life with my partner, which I would call both experiential and critical. It's like what I've lost, for now at least, is a kind of functioning that isn't necessarily vital to me. Like there's a donut hole.
This article gave me useful language for thinking about this. So that's cool.
I remember Sandra Bem. I was a women's studies major in college in the 80s, so she was pretty unavoidable. As a tie-in to the current BerenSTAIN bears thread, I remember knowing people who had thought for a long time that her last name was Bern, until it came up in a class discussion and they heard people saying Bem.
posted by not that girl at 8:27 PM on May 15, 2015 [6 favorites]
For instance he had posted in the bathroom a detailed set of instructions for how to take a shower, starting with, "1) Lift one foot and place into the tub."
I could imagine myself doing this.
I haven't had to help relatives with these issues (yet?), but I think about it a lot. There are people in my family who are aging, and while as far as I know they are not struggling with this yet, they could be at any time and I will have to figure things out from scratch at that time.
posted by Dip Flash at 8:31 PM on May 15, 2015 [1 favorite]
I could imagine myself doing this.
I haven't had to help relatives with these issues (yet?), but I think about it a lot. There are people in my family who are aging, and while as far as I know they are not struggling with this yet, they could be at any time and I will have to figure things out from scratch at that time.
posted by Dip Flash at 8:31 PM on May 15, 2015 [1 favorite]
I could imagine myself doing this
Me too, although I would certainly agonize (while I was able) over making the instructions simple enough for future-me to follow, with no assurance that I wasn't patronizing my future self, or (equally uselessly) not dumbing things down sufficiently. It makes the metaphorical bus collision seem easier by comparison...
posted by spacewrench at 9:46 PM on May 15, 2015
Me too, although I would certainly agonize (while I was able) over making the instructions simple enough for future-me to follow, with no assurance that I wasn't patronizing my future self, or (equally uselessly) not dumbing things down sufficiently. It makes the metaphorical bus collision seem easier by comparison...
posted by spacewrench at 9:46 PM on May 15, 2015
The staff was very upset about Mom's passing, she passed with the night crew. So, I came back the next day to talk with her regular caregivers, and I brought a lot of pastry. It had meaning for me to thank them, and sustain them a bit for a change.
You're a class act, Oyéah. A class act.
posted by aureliobuendia at 11:52 PM on May 15, 2015 [4 favorites]
You're a class act, Oyéah. A class act.
posted by aureliobuendia at 11:52 PM on May 15, 2015 [4 favorites]
Sandra Bem: a very inspiring woman in so many ways. I feel honoured to know about her life and the way she chose to live it. And to end it. Thanks for sharing this moving and thought-provoking article.
My father died of Alzheimer's and I am beyond grateful that his manifested in one of the "nicer" ways. That is, he became childlike and gentle. Watching him die over a period of several years was traumatic (and being there at the moment of his death was a special kind of torture and, at the same time, privilege), but it would have been so much worse had he turned into a raging, violent person. So I am thankful for small mercies.
My mother has told me repeatedly to "shoot her" should the same fate befall her. Of course having seen my father go through dementia, I know exactly what she means. But really, shoot her? I've told her that, obviously, that ain't gonna happen. I am going to send her this article. There are other means of achieving the same ends. Of course, I want her to live forever and can't bare the thought of losing another parent (let alone in the same, cruel way), but - should that situation arise - I am on board. After all, I would want the same for myself.
But don't even get me started on the anti-euthanasia contingent. >:-<
posted by Halo in reverse at 1:17 AM on May 16, 2015 [1 favorite]
My father died of Alzheimer's and I am beyond grateful that his manifested in one of the "nicer" ways. That is, he became childlike and gentle. Watching him die over a period of several years was traumatic (and being there at the moment of his death was a special kind of torture and, at the same time, privilege), but it would have been so much worse had he turned into a raging, violent person. So I am thankful for small mercies.
My mother has told me repeatedly to "shoot her" should the same fate befall her. Of course having seen my father go through dementia, I know exactly what she means. But really, shoot her? I've told her that, obviously, that ain't gonna happen. I am going to send her this article. There are other means of achieving the same ends. Of course, I want her to live forever and can't bare the thought of losing another parent (let alone in the same, cruel way), but - should that situation arise - I am on board. After all, I would want the same for myself.
But don't even get me started on the anti-euthanasia contingent. >:-<
posted by Halo in reverse at 1:17 AM on May 16, 2015 [1 favorite]
"one recent survey of 110 Dutch physicians treating dementia patients with advance directives asking to be euthanized found not a single one who had carried out the request."
This is distressing to me, these people trusted their doctors to carry out their wishes and were betrayed long after they lost the ability to comprehend the depth of their betrayal. It's not surprising to see most doctors err on the side of quantity of life over quality, after all a patient who dies peacefully at the time of their choosing is a patient that stops paying for support.
posted by Mr.Encyclopedia at 3:52 AM on May 16, 2015 [7 favorites]
This is distressing to me, these people trusted their doctors to carry out their wishes and were betrayed long after they lost the ability to comprehend the depth of their betrayal. It's not surprising to see most doctors err on the side of quantity of life over quality, after all a patient who dies peacefully at the time of their choosing is a patient that stops paying for support.
posted by Mr.Encyclopedia at 3:52 AM on May 16, 2015 [7 favorites]
a patient that stops paying for support.
Firstly, personal healthcare is financed differently in the Netherlands than in the USA. Also, believe it or not, Dutch doctors are reluctant to prescribe medications unless absolutely essential.
Secundo, while euthenasia is legal in the Netherlands, there is no right to euthanasia. Dutch doctors are, rightly or wrongly, free to refuse the request on personal grounds.
Thirdly: "Currently, four out of 10 would be prepared to help someone with early stage dementia to die, but only one in three would do this for someone with late stage dementia, even if that person had written an advance directive for euthanasia."
Source: Dutch doctors share views on euthanasia
posted by Mister Bijou at 4:34 AM on May 16, 2015 [1 favorite]
Firstly, personal healthcare is financed differently in the Netherlands than in the USA. Also, believe it or not, Dutch doctors are reluctant to prescribe medications unless absolutely essential.
Secundo, while euthenasia is legal in the Netherlands, there is no right to euthanasia. Dutch doctors are, rightly or wrongly, free to refuse the request on personal grounds.
Thirdly: "Currently, four out of 10 would be prepared to help someone with early stage dementia to die, but only one in three would do this for someone with late stage dementia, even if that person had written an advance directive for euthanasia."
Source: Dutch doctors share views on euthanasia
posted by Mister Bijou at 4:34 AM on May 16, 2015 [1 favorite]
My mother died from Alzheimer's. So did her brother. And my father's sister.
If I ever show the early signs of Alzheimer's, I will not show the later signs of it.
posted by Legomancer at 6:48 AM on May 16, 2015 [5 favorites]
If I ever show the early signs of Alzheimer's, I will not show the later signs of it.
posted by Legomancer at 6:48 AM on May 16, 2015 [5 favorites]
If you are looking for resources to talk to your loved ones about your own end of life plan, or theirs, The Conversation Project is a great place to start.
posted by stripesandplaid at 7:03 AM on May 16, 2015 [2 favorites]
posted by stripesandplaid at 7:03 AM on May 16, 2015 [2 favorites]
When my father was ultimately hospitalized, there was a DNR conference with him. It took quite some time for him to understand what the topic of the discussion was. He was not having an easy time at that point, in pain, sometimes irrational, confused, fearful. Finally, he said, "...I'm breezin' in the weeds here. But I want, ... I want, um, to, don't stop."
posted by StickyCarpet at 7:43 AM on May 16, 2015
posted by StickyCarpet at 7:43 AM on May 16, 2015
When I was in the early stages of fibro, before I was diagnosed and life was just suddenly pain, exhaustion, pain, and confusion, I discovered a very unpleasant aspect of my personality. I lashed out a lot. When things hurt and my brain was muddled, I didn't respond with good natured confusion. Instead, despite years of working on my anger and teaching myself ways to react with kindness, I raged. I raged at random people for being in my way, I raged at my boyfriend for not helping out, I raged at the cats for not giving me one second of piece. I stood there confused and screamed at people to just give me one fucking second to figure this out.
After the treatment started working and the pain faded, I stopped feeling so dumb and confused. I was kind again, I spoke patiently and articulated my needs. Then a flare up happened and the rage came back like a flash flood.
Then I realized if dementia gets me like it's gotten most of the women in my family, I will be one of the angry ones. I will rage not only at my own failings, but at those who love me and care for me for allowing this to happen. I don't want to be remembered like that.
And I won't.
posted by teleri025 at 8:54 AM on May 16, 2015 [5 favorites]
After the treatment started working and the pain faded, I stopped feeling so dumb and confused. I was kind again, I spoke patiently and articulated my needs. Then a flare up happened and the rage came back like a flash flood.
Then I realized if dementia gets me like it's gotten most of the women in my family, I will be one of the angry ones. I will rage not only at my own failings, but at those who love me and care for me for allowing this to happen. I don't want to be remembered like that.
And I won't.
posted by teleri025 at 8:54 AM on May 16, 2015 [5 favorites]
Reading this made me feel kind of exhausted. I absolutely thought this was a good solution for her and her family. But with all their planning and resources, it still sounds like it took a lot of hard work to get it right-- and quite a lot of luck, too.
posted by BibiRose at 9:51 AM on May 16, 2015 [2 favorites]
posted by BibiRose at 9:51 AM on May 16, 2015 [2 favorites]
My mother is entering the middle stages of Alzheimer's. At Christmas, when she knew we were planning to move her to the assisted living wing of her facility (same building, different wing), she sat in the restaurant with me and cried and told me she wished she were dead. She has good days, but I too hope she dies long before she ends up like my husband's poor aunt, who cried for her mama until she passed three months before her 95th birthday.
Alzheimer's is terrible. I'm glad I'm an atheist so I don't have to consider what I think of a god who would create such a plague.
posted by immlass at 2:13 PM on May 16, 2015 [6 favorites]
Alzheimer's is terrible. I'm glad I'm an atheist so I don't have to consider what I think of a god who would create such a plague.
posted by immlass at 2:13 PM on May 16, 2015 [6 favorites]
Thank you for posting this to MeFi. Very very thought provoking.
posted by brainwane at 6:23 AM on May 17, 2015
posted by brainwane at 6:23 AM on May 17, 2015
I think, based on many genetic indicators, that someday I am going to end up in some sort of a dementia state. I hope that I have the foresight and courage (from my early catholic upbringing) to arrange for this.
posted by aloiv2 at 9:55 PM on May 17, 2015
posted by aloiv2 at 9:55 PM on May 17, 2015
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posted by zarq at 1:15 PM on May 15, 2015