Watching the Lights Go Out
April 2, 2013 11:13 PM Subscribe
I have Alzheimer's disease.
I’ve probably had it for about two years, but it’s still pretty early in the illness. Most other people don’t notice my illness yet, although my memory is starting to move from a normal “bad memory” that lots of older people have to an abnormal “there’s-something-wrong-with-his-memory.” I don’t feel abnormal, at least not yet. But, in addition to the memory problem, I’m certainly slowing down. As a retired physician who hass seen his share of mentally declining patients, I know what’s most likely in store as the disease gets worse: A long, progressive mental decline (to the point, for instance, where I don’t recognize my family), nursing home care, and early death from complications of the disease. I’m writing because it may be helpful for people to know what one person’s process is like from inside the diseased mind....
Some of David Hilfiker's other writing is linked from the autobiography's sidebar, but I particularly recommend his blog and A Theology Out of My Life with Alzheimer Disease.
[via James Fallows, who provides some further background]
The piece is like 2/3 humblebragging about his past, but once you get through that, it's pretty interesting!
posted by Grandysaur at 12:06 AM on April 3, 2013 [3 favorites]
posted by Grandysaur at 12:06 AM on April 3, 2013 [3 favorites]
So... sort of like a real-life Flowers for Algernon. Alzheimer's is a helluva disease, from what I've read. This is a fascinating approach to dealing with it, and it will be interesting, if depressing, to follow.
The piece is like 2/3 humblebragging about his past, but once you get through that, it's pretty interesting!
I skimmed until I got to the "then there were the early warning signs" part of the post, but I'm willing to forgive him for writing down as much of his history as he does because, 1) he calls it an autobiography, and 2) he's literally losing his mind/memories. Write while you can, write about what got you to this point, and write so that those who love you don't lose that history.
Not only was I unable to recreate it, however, but, when I went back to old spreadsheets and looked at the formula, it was too complex for me even to understand! Even looking at it in some detail I couldn’t figure out what I’d done. What was going on?
I've read comments I've written here on MeFi or on Ask before and had that same thought—I wrote *this*?? What the hell am I saying?
That probably doesn't bode terribly well for me...
posted by disillusioned at 12:20 AM on April 3, 2013 [9 favorites]
The piece is like 2/3 humblebragging about his past, but once you get through that, it's pretty interesting!
I skimmed until I got to the "then there were the early warning signs" part of the post, but I'm willing to forgive him for writing down as much of his history as he does because, 1) he calls it an autobiography, and 2) he's literally losing his mind/memories. Write while you can, write about what got you to this point, and write so that those who love you don't lose that history.
Not only was I unable to recreate it, however, but, when I went back to old spreadsheets and looked at the formula, it was too complex for me even to understand! Even looking at it in some detail I couldn’t figure out what I’d done. What was going on?
I've read comments I've written here on MeFi or on Ask before and had that same thought—I wrote *this*?? What the hell am I saying?
That probably doesn't bode terribly well for me...
posted by disillusioned at 12:20 AM on April 3, 2013 [9 favorites]
Ugh. This is very probably in my future too, as my father, his sister and his mother all went hugely senile. I already see signs of mental decay that seem to go a little beyond the sort of absent-mindedness that typically accompanies ageing. And I live alone. Deep joy. I'm going to be one of those old duffers who leaves the gas on and blows the house up, I imagine. I should probably warn the neighbours.
posted by Decani at 2:15 AM on April 3, 2013 [7 favorites]
posted by Decani at 2:15 AM on April 3, 2013 [7 favorites]
I've read comments I've written here on MeFi or on Ask before and had that same thought—I wrote *this*?? What the hell am I saying?
That probably doesn't bode terribly well for me...
posted by disillusioned at 3:20 AM on April 3
Not to mention your username! ;)
posted by mrzer0 at 3:50 AM on April 3, 2013 [1 favorite]
That probably doesn't bode terribly well for me...
posted by disillusioned at 3:20 AM on April 3
Not to mention your username! ;)
posted by mrzer0 at 3:50 AM on April 3, 2013 [1 favorite]
Thanks for this. Alzheimer's runs in my family too, and people finally talking about what it is like to have it, like this or basketball coach Pat Summit, seems like a change that is long overdue.
posted by katinka-katinka at 4:10 AM on April 3, 2013
posted by katinka-katinka at 4:10 AM on April 3, 2013
My mother has Alzheimer's. It's getting pretty advanced, too. Owing to financial issues and family politics, she's still living alone at home, against my belief that she is long past the need for specialized care. I live over 70 miles away, and cannot tend to her needs directly, but I do call her every night to coax her into taking her medications.
Night after night, I dread making the call, because there's just no predicting who will be on the other end. Sometimes weak but amiable. Sometimes confused and angry. Sometimes scared and alone. She doesn't really know who she's talking to anymore, when I call. It's been like listening to someone steadily going insane in nightly installments.
The experience has confirmed in me the desire to never allow myself to go down that path. I will go by my own hand before I let myself succumb to Alzheimer's.
posted by Thorzdad at 4:54 AM on April 3, 2013 [7 favorites]
Night after night, I dread making the call, because there's just no predicting who will be on the other end. Sometimes weak but amiable. Sometimes confused and angry. Sometimes scared and alone. She doesn't really know who she's talking to anymore, when I call. It's been like listening to someone steadily going insane in nightly installments.
The experience has confirmed in me the desire to never allow myself to go down that path. I will go by my own hand before I let myself succumb to Alzheimer's.
posted by Thorzdad at 4:54 AM on April 3, 2013 [7 favorites]
Thorzdad, like you, I plan on turning out the lights before I become an empty shell. The scary thing about dementia, though, is that you may not realize it's happening. It would be helpful if the states that support death with dignity acts had some sort of registry allowing you to say "put me down if I'm too mentally incompetent to do it myself."
posted by CheeseDigestsAll at 5:27 AM on April 3, 2013 [8 favorites]
posted by CheeseDigestsAll at 5:27 AM on April 3, 2013 [8 favorites]
Not only was I unable to recreate it, however, but, when I went back to old spreadsheets and looked at the formula, it was too complex for me even to understand! Even looking at it in some detail I couldn’t figure out what I’d done. What was going on?
As a developer I have to say this is pretty normal even without Alzheimer's. It's a bit similar to the expression that debugging is twice as hard as coding so if you write the cleverest code you can then you are not smart enough to debug it.
posted by srboisvert at 6:56 AM on April 3, 2013 [7 favorites]
As a developer I have to say this is pretty normal even without Alzheimer's. It's a bit similar to the expression that debugging is twice as hard as coding so if you write the cleverest code you can then you are not smart enough to debug it.
posted by srboisvert at 6:56 AM on April 3, 2013 [7 favorites]
For a decade or so I’d been driving two or three times a year down to southern Virginia to visit a friend, Jens Soering, who was serving a life sentence for two grisly murders he almost certainly didn’t commit.
I'm not sure if this sentence is supposed to make me laugh, but it did.
It turns out the friend has a Wikipedia page, and the paragraph summary is kind of interesting.
posted by Nonsteroidal Anti-Inflammatory Drug at 7:06 AM on April 3, 2013 [3 favorites]
I'm not sure if this sentence is supposed to make me laugh, but it did.
It turns out the friend has a Wikipedia page, and the paragraph summary is kind of interesting.
posted by Nonsteroidal Anti-Inflammatory Drug at 7:06 AM on April 3, 2013 [3 favorites]
This is a really selfish thing to say, but I want to anyway: I'm really, really glad that my family on both sides has a more or less unbroken history of lasting into their 80s and 90s, and dying peacefully with no cancer or dementia. My step-grandma had Alzheimers and although she was well-cared for and seemed reasonably content, thinking about what it must be like from the inside gives me the real horrorshivers.
posted by Drexen at 7:33 AM on April 3, 2013 [1 favorite]
posted by Drexen at 7:33 AM on April 3, 2013 [1 favorite]
Wow.
For me, the long "humble-bragging" intro was profoundly moving. This is almost exactly my dad's story. It has given me a lot to think about
posted by mumimor at 8:14 AM on April 3, 2013 [1 favorite]
For me, the long "humble-bragging" intro was profoundly moving. This is almost exactly my dad's story. It has given me a lot to think about
posted by mumimor at 8:14 AM on April 3, 2013 [1 favorite]
I don't know if there's anything that scares me as much as Alzheimer's.
I often make comments to my friends and family that suggest I believe in reincarnation or some other form of an afterlife, but deep down I feel that death will be the end of what I think of as me. That sucks, but I can make peace with it.
Alzheimer's, on the other hand, would be the destruction of what I think of as me, and I can't come to grips with that at all. I love being me, and I love all of my memories -- even of the very sad and effed up things that have occurred in my life -- and the thought of losing my faculties and memories of my loved ones terrifies me.
I admire Mr. Hilfiker's bravery and courage in looking his fate right in the eye and doing what he can to help others who are or will be walking down the same path. Thanks for posting this, Joe in Australia.
posted by lord_wolf at 8:34 AM on April 3, 2013 [4 favorites]
I often make comments to my friends and family that suggest I believe in reincarnation or some other form of an afterlife, but deep down I feel that death will be the end of what I think of as me. That sucks, but I can make peace with it.
Alzheimer's, on the other hand, would be the destruction of what I think of as me, and I can't come to grips with that at all. I love being me, and I love all of my memories -- even of the very sad and effed up things that have occurred in my life -- and the thought of losing my faculties and memories of my loved ones terrifies me.
I admire Mr. Hilfiker's bravery and courage in looking his fate right in the eye and doing what he can to help others who are or will be walking down the same path. Thanks for posting this, Joe in Australia.
posted by lord_wolf at 8:34 AM on April 3, 2013 [4 favorites]
This is a really selfish thing to say, but I want to anyway: I'm really, really glad that my family on both sides has a more or less unbroken history of lasting into their 80s and 90s, and dying peacefully with no cancer or dementia.
posted by Drexen at 10:33 AM on April 3
Same here (well, except for the cancer). Then my dad came down with dementia.
I can't tell you how unspeakably angry that makes me. I thought I ONLY had to worry about cancer.
posted by magstheaxe at 8:50 AM on April 3, 2013
posted by Drexen at 10:33 AM on April 3
Same here (well, except for the cancer). Then my dad came down with dementia.
I can't tell you how unspeakably angry that makes me. I thought I ONLY had to worry about cancer.
posted by magstheaxe at 8:50 AM on April 3, 2013
Many people say they'd rather die by their own hand rather than go to a nursing home. I share this sentiment. But do people ever actually do this? Are there any statistics?
posted by HotToddy at 8:50 AM on April 3, 2013
posted by HotToddy at 8:50 AM on April 3, 2013
I like the idea that I would take my own life before I would waste away of Alzheimer's disease, but it feels so terribly unfair to lose days or months of precious cognition. When is the day that someone is no longer 'there'? The day the don't know their wife? daughter/son? friend? I suspect I'd leave it too long, and be unable to accomplish the task. Hilfiker's wife seems to have had a lot to deal with - his recurrent depression, frequent moves/career changes, and now, dementia. Caregivers deserve medals; it's no easy task.
posted by theora55 at 8:57 AM on April 3, 2013 [2 favorites]
posted by theora55 at 8:57 AM on April 3, 2013 [2 favorites]
"I’m embarrassed to tout my intelligence in this way, but as I write this blog while my mental faculties decline, I want you to know what I’m starting with and how it’s shaped my identity. I’m heading into unchartered territory in which my primary sense of self will fall apart quickly. And I will remain in this now unfamiliar territory for years."posted by ChuraChura at 9:09 AM on April 3, 2013
Far from humblebragging, I found the first two thirds fascinating. He's had a very interesting life and done some worthwhile things, and he writes about his past in a matter-of-fact way that I really appreciated.
I think it's brave of him to write publicly about his experience with Alzheimer's... I know if I or someone I knew were diagnosed with it, I would find it extremely helpful to read a first-person account of what it's like.
posted by snorkmaiden at 9:42 AM on April 3, 2013 [5 favorites]
I think it's brave of him to write publicly about his experience with Alzheimer's... I know if I or someone I knew were diagnosed with it, I would find it extremely helpful to read a first-person account of what it's like.
posted by snorkmaiden at 9:42 AM on April 3, 2013 [5 favorites]
Close friends and family have said that the time the person with Alzheimer's moves in and out of consciousness is the absolute worst. Because the person does understand that the moments of clarity are fleeting and will be followed by periods they don't remember (and lots of times, don't want to because of angry tirades, horrible insults and childish tantrums). I've been told that once a person "crosses over" into total dementia, it's easier to stomach.
posted by Kokopuff at 9:48 AM on April 3, 2013 [1 favorite]
posted by Kokopuff at 9:48 AM on April 3, 2013 [1 favorite]
I've been told that once a person "crosses over" into total dementia, it's easier to stomach.
It is. Because now the loved one you watched regress through layers of ever increasing fear, anger, panic and confusion is finally gone. Nothing remains of the person you once knew and a child-like phantom remains. The small fragments of consciousness looking out through those eyes can be comforted a little, which is far more than you have been able to give for a long time. Your loved one is dead; so you begin to mourn while you wait for the body to follow.
posted by Vysharra at 10:05 AM on April 3, 2013 [12 favorites]
It is. Because now the loved one you watched regress through layers of ever increasing fear, anger, panic and confusion is finally gone. Nothing remains of the person you once knew and a child-like phantom remains. The small fragments of consciousness looking out through those eyes can be comforted a little, which is far more than you have been able to give for a long time. Your loved one is dead; so you begin to mourn while you wait for the body to follow.
posted by Vysharra at 10:05 AM on April 3, 2013 [12 favorites]
I've been told that once a person "crosses over" into total dementia, it's easier to stomach.
Having watched two men in my family pass through total dementia into final resting, I would not say any part of the process is easy to stomach. In each case, it was amongst the most difficult three years one could ensure – despite the fact that in both cases, each individual had excellent medical coverage and neither case was I the primary caretaker.
This article was a wonderful read, and a brave thing to write. It has helped me place the experiences in my own family, for during the process one does wonder what the experience it like for the person. Do they know that they are gradually succumbing to demential? Are they able to process that in a meaningful way?
They were both absolutely brilliant men. Each served in the military and went on to long, successful careers – one in the public sector and one in private enterprise. They were legendary thinkers, which – the doctors said – allowed them to compensate for the illness. They would have begun experiencing symptoms long before those symptoms became obvious to those immediately around them. The compensating would have first been subconscious, and then conscious.
In the former case, his name was E, he experienced a rather serious form of dementia but never fully descended into it. Even in the final days, he would flash back to consciousness. Old dog he was, the last conversation I had with him lasted about an hour and a half. We talked about life in the UK, our separate travels in China, and women. He was fully present and very sharp.
He mentioned the experience only briefly, saying it was like being in a constant dream-state. He was never sure what was real, and he said it wasn't all bad. He mentioned that whilst he was forgetting important things – like his wife's name – and great memories – like the birth of his children – he was also forgetting bad things. He had a history of mild depression, and in those final years, he was freed from it. I hadn't conceptualised it at the time, but he was – as mentioned in the article – fully present. Not distracted by the past. Not anxiously concerned with the future. He was existing in a constant moment.
Those episodes of clarity disappeared when the morphine began. He was glazed over and hazy. I think at that point, he was ready to go. He had the look of someone sitting in an airline terminal, waiting for a delayed flight, with no sense of when boarding will actually begin. He wasn't peaceful but he wasn't not peaceful. When the morphine dose was lightened – part of a routine adjustment cycle apparently – he became very clear mentally, however the somatic pain overtook him. He could speak and communicate, but the pain was so great, there was little humane option other than to increase the dose again. Slowly, surely the sun set. There was a brief dusk, and then twilight became night. He looked finally peaceful, and there was even a youth about him.
In the latter case, his name was J, he fully descended into what can only be considered to be a waking hell. With him, there were no flashes of clarity. With E, the erasure went from early memories to later memories. With J, the erasure went from later memories backward.
His mind literally dissolved. He had known many influential people in his time. That all evaporated. He spoke of high school football plays. He said he was ready to play again. He once got a phone call from Ginger Rogers inviting him to come dancing with her and Fred Astair. He was very frustrated that he did not have a clean tuxedo to wear. He was sure that they would not let him into the ballroom without a clean, pressed tuxedo.
The most horrifying situation to him was the news, in which he previously found great comfort. He connected Germany's current economic rise with the last rise of Germany he had experienced. He saw the GFC coming, and dodged the majority of it. He moved all of his assets exactly where he should have. Only he could not remember doing that and would sit in terror when the market news came out. He processed information like a child, for the most part. He was incapable of communicating what he was experiencing.
Unlike with E, with J there was pure terror and a deep feeling of loneliness. He too existed in the present – in an infinite present – and far from being peaceful, it was literally terrifying. The confusion increased and erratic behaviours began manifesting. Contextually inappropriate behaviours that further isolated him from the world around him. He could not be left alone, for he had no understanding of his physical limitations. And then it was time for the morphine.
The morphine phase was a dark angel, and for J it was perhaps much shorter than for E. His body was so exhausted from the stress and confusion that the morphine ratchet was swift. There was no final moment of awareness or clarity for J. Only collapse and expiration. A family friend who was a priest presided, and he said that J was in there, somewhere. Listening. He had been watching – trapped in the private prison, unable to communicate but still receptive. I think we all wanted to believe that was true.
So "easier to stomach" is perhaps relative to the individual and to the stomach. One mitigating factor has been the rise of dementia in society. There are a growing number of resources available both to the individual, and to their caregivers and families. Support groups, therapy groups, and a growing base of research on best practices for death and dying.
I have been waiting for ten years to read this article, and to hear this first-person point of view, for it is amongst the worst aspects of the illness – that the afflicted loses their ability to communicate and connect with those around them. Thank you Antipodean Joe for that.
From a neutral point of view, we are going to see a lot more of this. I was at a(n amazing) lecture given by the Oxford Institute of Ageing about changing demographics, and lengthening lifespans. It's a bittersweet triumph that we have arrived at the point where we can extend the functioning of the body to the point where it is the mind that then degrades. As medicine has advanced to the point where we can extend life, we now must engage in societal conversations about quality of life, and what a life worth living entails.
I think even the most ardent opponents of euthanasia will give it a second thought watching family members go through the full process of dementia in close proximity. I had always considered that I would want my own life to be extended as far as humanly possible, without ever considering quality of life. For the past few years, I have now been researching appropriate qualities of life, and the related provisions around this.
The young people of today have a huge opportunity to invent new technologies to help care for the older of us. This is not a problem that is going to go away, far from it. This is a situation that is literally about to explode in the West as the baby boom age group enters the zone. Today, we have morphine, which is a coarse godsend for end of life care. I've spoken with a few other people about this, and we cannot imagine the immense suffering morphine averts. Yet, as mentioned it is a coarse, dumb solution.
I think we can do much better. And ideally, this is research that can be conducted by public universities and bodies, so that the resulting technologies and treatments are available to as many people as possible.
posted by nickrussell at 11:18 AM on April 3, 2013 [28 favorites]
Having watched two men in my family pass through total dementia into final resting, I would not say any part of the process is easy to stomach. In each case, it was amongst the most difficult three years one could ensure – despite the fact that in both cases, each individual had excellent medical coverage and neither case was I the primary caretaker.
This article was a wonderful read, and a brave thing to write. It has helped me place the experiences in my own family, for during the process one does wonder what the experience it like for the person. Do they know that they are gradually succumbing to demential? Are they able to process that in a meaningful way?
They were both absolutely brilliant men. Each served in the military and went on to long, successful careers – one in the public sector and one in private enterprise. They were legendary thinkers, which – the doctors said – allowed them to compensate for the illness. They would have begun experiencing symptoms long before those symptoms became obvious to those immediately around them. The compensating would have first been subconscious, and then conscious.
In the former case, his name was E, he experienced a rather serious form of dementia but never fully descended into it. Even in the final days, he would flash back to consciousness. Old dog he was, the last conversation I had with him lasted about an hour and a half. We talked about life in the UK, our separate travels in China, and women. He was fully present and very sharp.
He mentioned the experience only briefly, saying it was like being in a constant dream-state. He was never sure what was real, and he said it wasn't all bad. He mentioned that whilst he was forgetting important things – like his wife's name – and great memories – like the birth of his children – he was also forgetting bad things. He had a history of mild depression, and in those final years, he was freed from it. I hadn't conceptualised it at the time, but he was – as mentioned in the article – fully present. Not distracted by the past. Not anxiously concerned with the future. He was existing in a constant moment.
Those episodes of clarity disappeared when the morphine began. He was glazed over and hazy. I think at that point, he was ready to go. He had the look of someone sitting in an airline terminal, waiting for a delayed flight, with no sense of when boarding will actually begin. He wasn't peaceful but he wasn't not peaceful. When the morphine dose was lightened – part of a routine adjustment cycle apparently – he became very clear mentally, however the somatic pain overtook him. He could speak and communicate, but the pain was so great, there was little humane option other than to increase the dose again. Slowly, surely the sun set. There was a brief dusk, and then twilight became night. He looked finally peaceful, and there was even a youth about him.
In the latter case, his name was J, he fully descended into what can only be considered to be a waking hell. With him, there were no flashes of clarity. With E, the erasure went from early memories to later memories. With J, the erasure went from later memories backward.
His mind literally dissolved. He had known many influential people in his time. That all evaporated. He spoke of high school football plays. He said he was ready to play again. He once got a phone call from Ginger Rogers inviting him to come dancing with her and Fred Astair. He was very frustrated that he did not have a clean tuxedo to wear. He was sure that they would not let him into the ballroom without a clean, pressed tuxedo.
The most horrifying situation to him was the news, in which he previously found great comfort. He connected Germany's current economic rise with the last rise of Germany he had experienced. He saw the GFC coming, and dodged the majority of it. He moved all of his assets exactly where he should have. Only he could not remember doing that and would sit in terror when the market news came out. He processed information like a child, for the most part. He was incapable of communicating what he was experiencing.
Unlike with E, with J there was pure terror and a deep feeling of loneliness. He too existed in the present – in an infinite present – and far from being peaceful, it was literally terrifying. The confusion increased and erratic behaviours began manifesting. Contextually inappropriate behaviours that further isolated him from the world around him. He could not be left alone, for he had no understanding of his physical limitations. And then it was time for the morphine.
The morphine phase was a dark angel, and for J it was perhaps much shorter than for E. His body was so exhausted from the stress and confusion that the morphine ratchet was swift. There was no final moment of awareness or clarity for J. Only collapse and expiration. A family friend who was a priest presided, and he said that J was in there, somewhere. Listening. He had been watching – trapped in the private prison, unable to communicate but still receptive. I think we all wanted to believe that was true.
So "easier to stomach" is perhaps relative to the individual and to the stomach. One mitigating factor has been the rise of dementia in society. There are a growing number of resources available both to the individual, and to their caregivers and families. Support groups, therapy groups, and a growing base of research on best practices for death and dying.
I have been waiting for ten years to read this article, and to hear this first-person point of view, for it is amongst the worst aspects of the illness – that the afflicted loses their ability to communicate and connect with those around them. Thank you Antipodean Joe for that.
From a neutral point of view, we are going to see a lot more of this. I was at a(n amazing) lecture given by the Oxford Institute of Ageing about changing demographics, and lengthening lifespans. It's a bittersweet triumph that we have arrived at the point where we can extend the functioning of the body to the point where it is the mind that then degrades. As medicine has advanced to the point where we can extend life, we now must engage in societal conversations about quality of life, and what a life worth living entails.
I think even the most ardent opponents of euthanasia will give it a second thought watching family members go through the full process of dementia in close proximity. I had always considered that I would want my own life to be extended as far as humanly possible, without ever considering quality of life. For the past few years, I have now been researching appropriate qualities of life, and the related provisions around this.
The young people of today have a huge opportunity to invent new technologies to help care for the older of us. This is not a problem that is going to go away, far from it. This is a situation that is literally about to explode in the West as the baby boom age group enters the zone. Today, we have morphine, which is a coarse godsend for end of life care. I've spoken with a few other people about this, and we cannot imagine the immense suffering morphine averts. Yet, as mentioned it is a coarse, dumb solution.
I think we can do much better. And ideally, this is research that can be conducted by public universities and bodies, so that the resulting technologies and treatments are available to as many people as possible.
posted by nickrussell at 11:18 AM on April 3, 2013 [28 favorites]
I'd hope this doesn't evolve into a discussion of euthanasia. During the last decade + some I've lost several close relatives. Some of them had earnestly declared in advance that they would rather commit suicide, or ask their spouses to kill them off, than to live as vegetables. They were the ones who fought the most and worst till the last hour against death. You have no idea what you will do or feel in those last hours and days.
For me, the deepest terror would be to have a suicide pact with my spouse and regret it, without being able to communicate that regret.
This hits deeply, because I've been reading my diary notes about a dear loved one's last days only yesterday. These are only brief, and mainly practical notes, with the purpose of keeping me sane through the process, since I was worried (with some right) there might be a legal aftermath. But still, I am surprised at the complexity of communication between the dying patient, the medical and legal systems, us, the caregivers, and the more distant relatives and friends. If I were a doctor or a nurse or a lawyer - anyone who could suffer legal repercussions from euthanasia - I'd be against it. But also if I were me - a caregiver caring for suffering relatives - regardless of what previous agreement there was, I would not assist suicide. (today I would obviously not at all enter into any such agreement).
OK, now it seems like I am opening the very discussion I don't want, so I'll end up by explaining why this text reminded me so much of my dad.
One of the things that was really, really unbearable when my dad entered dementia was the manipulation and anger. He was horrible. And my dad has always been the most polite and respectful person on the globe, in my view. It was a complete change of character. Upon reading this narrative, I suddenly understood the fear, and the childlike reaction this fear spurred. It made so much sense. If I'd known what it was about, I would have reacted differently. I would not have been able to spend more time (10-20 hours a week), but I would have spent that time better.
My dad was a very competent, intelligent and self-assured person, though I suspect he too has suffered from depression during his lifetime. And when he grew old, though he obviously needed my help, I had no idea he might have need emotional reassurance. After reading this, I regret that I spent all my caring time being practical, and none of it telling my dad I'd be there for him forever, and that I loved him. Because now I see it would have helped him a lot.
Some years ago, my gran was in intensive care and was delirious. It was crazy and somehow funny too. But she wasn't demented, just ill. She was at the top of the world a few weeks later. And how could we have known. She was one of the relatives certain of suicide just a decade ago. Those four days of delirium were one of the most amazing experiences of my life. We have no idea what life includes
posted by mumimor at 12:46 PM on April 3, 2013 [2 favorites]
For me, the deepest terror would be to have a suicide pact with my spouse and regret it, without being able to communicate that regret.
This hits deeply, because I've been reading my diary notes about a dear loved one's last days only yesterday. These are only brief, and mainly practical notes, with the purpose of keeping me sane through the process, since I was worried (with some right) there might be a legal aftermath. But still, I am surprised at the complexity of communication between the dying patient, the medical and legal systems, us, the caregivers, and the more distant relatives and friends. If I were a doctor or a nurse or a lawyer - anyone who could suffer legal repercussions from euthanasia - I'd be against it. But also if I were me - a caregiver caring for suffering relatives - regardless of what previous agreement there was, I would not assist suicide. (today I would obviously not at all enter into any such agreement).
OK, now it seems like I am opening the very discussion I don't want, so I'll end up by explaining why this text reminded me so much of my dad.
One of the things that was really, really unbearable when my dad entered dementia was the manipulation and anger. He was horrible. And my dad has always been the most polite and respectful person on the globe, in my view. It was a complete change of character. Upon reading this narrative, I suddenly understood the fear, and the childlike reaction this fear spurred. It made so much sense. If I'd known what it was about, I would have reacted differently. I would not have been able to spend more time (10-20 hours a week), but I would have spent that time better.
My dad was a very competent, intelligent and self-assured person, though I suspect he too has suffered from depression during his lifetime. And when he grew old, though he obviously needed my help, I had no idea he might have need emotional reassurance. After reading this, I regret that I spent all my caring time being practical, and none of it telling my dad I'd be there for him forever, and that I loved him. Because now I see it would have helped him a lot.
Some years ago, my gran was in intensive care and was delirious. It was crazy and somehow funny too. But she wasn't demented, just ill. She was at the top of the world a few weeks later. And how could we have known. She was one of the relatives certain of suicide just a decade ago. Those four days of delirium were one of the most amazing experiences of my life. We have no idea what life includes
posted by mumimor at 12:46 PM on April 3, 2013 [2 favorites]
I would not assist suicide.
I would. My grandmother spent the last months of her "life" curled into a fetal position, emaciated and unable to speak. She had lived 7 years since her dementia diagnosis and had regressed to an infantile state. In my mind, my grandmother died over a year ago.
During this time, the caregivers suggested getting a g-tube for her so that she could be fed without the risk of her choking (she was showing a weak swallow response either from infirmity or actually forgetting how to eat). This suggestion came after a week in the hospital. My beloved, strong, inspiring grandmother had spent a day curled just slightly tighter and mumbling in such a way that might have whimpering or not. After she refused her evening meal, the staff called us. They suspected shingles at first, and then a dozen other things until finally they found she had been having heart attacks all day. She survived but the doctor told us that she had been in pain the entire time.
There were more meds but no g-tube. We switched to ensure and signed waivers that absolved the caregivers of responsibility if she choked. We wanted desperately to ease her suffering, but none of us wanted to prolong her life.
It took her 4 more months and even more pain to finally escape the torment of her condition. If she had indicated at all that it was her wish, I would have done everything in my power to save her from the pain that she suffered in the final stages of the disease.
posted by Vysharra at 1:50 PM on April 3, 2013 [5 favorites]
I would. My grandmother spent the last months of her "life" curled into a fetal position, emaciated and unable to speak. She had lived 7 years since her dementia diagnosis and had regressed to an infantile state. In my mind, my grandmother died over a year ago.
During this time, the caregivers suggested getting a g-tube for her so that she could be fed without the risk of her choking (she was showing a weak swallow response either from infirmity or actually forgetting how to eat). This suggestion came after a week in the hospital. My beloved, strong, inspiring grandmother had spent a day curled just slightly tighter and mumbling in such a way that might have whimpering or not. After she refused her evening meal, the staff called us. They suspected shingles at first, and then a dozen other things until finally they found she had been having heart attacks all day. She survived but the doctor told us that she had been in pain the entire time.
There were more meds but no g-tube. We switched to ensure and signed waivers that absolved the caregivers of responsibility if she choked. We wanted desperately to ease her suffering, but none of us wanted to prolong her life.
It took her 4 more months and even more pain to finally escape the torment of her condition. If she had indicated at all that it was her wish, I would have done everything in my power to save her from the pain that she suffered in the final stages of the disease.
posted by Vysharra at 1:50 PM on April 3, 2013 [5 favorites]
My father-in-law has Alzheimer's. He lived with us for 3 months. It was hell. We described it as every hour being like an etch-a-sketch. No matter how happy/angry/irrational/ecstatic he was, it would be gone soon.
My husband has HIV and his father has Alzheimer's. This does not bode well for him or his memory as people with HIV tend to develop dementia anyway as the virus crosses the blood-brain barrier.
We have plans in place.
P.S. If anyone is dealing with caregiving, I highly recommend The 36 Hour Day.
posted by Sophie1 at 2:12 PM on April 3, 2013 [3 favorites]
My husband has HIV and his father has Alzheimer's. This does not bode well for him or his memory as people with HIV tend to develop dementia anyway as the virus crosses the blood-brain barrier.
We have plans in place.
P.S. If anyone is dealing with caregiving, I highly recommend The 36 Hour Day.
posted by Sophie1 at 2:12 PM on April 3, 2013 [3 favorites]
As the population of the globe grows older, and we as individuals grow older, one would imagine there was a political pressure to improve the quality of life for the elderly and dying.
When my paternal grandmother died, in 1986, she was just an old lady dying of cancer, and nobody cared about anything, not even gran. In today's perspective, she might have lived happily another 10 years.
When my granddad died in 2002, it was a big drama, and a crazy amount of medical mistakes were made. He suffered terribly, and unnecessarily.
From then on, things have changed rapidly . In part because we as a family have sadly gained knowledge. It is a skill to have a dying relative. But also because society as a whole has changed. When the elder gran hallucinated, it was a sign of her imminent death and dementia, and treated as such. Younger gran was treated as a normal patient, in spite of her 87 years, and lived to enjoy more health and activity. At the exact same hospital, with 22 years difference.
Elderly people can show signs of dementia just because they lack water or protein. And truly demented patients can be treated with appropriate therapies.
I am trying not to feel guilt about those who were treated badly. I loved my grandfather, and every single day I think about his painful end.
And obviously, I'd never blame anyone who found themselves in my situation, ever. But I do think we all should think about improving quality of life for the elderly, and for the dying. We will be there ourselves at a point.
In that much wider context, I think euthanasia is a digression, wether you are Sarah Palin screaming about death panels or you are some Swiss doctor offering freakish services for the rich. Normal people need to have good lives and deaths.
posted by mumimor at 4:04 PM on April 3, 2013 [1 favorite]
When my paternal grandmother died, in 1986, she was just an old lady dying of cancer, and nobody cared about anything, not even gran. In today's perspective, she might have lived happily another 10 years.
When my granddad died in 2002, it was a big drama, and a crazy amount of medical mistakes were made. He suffered terribly, and unnecessarily.
From then on, things have changed rapidly . In part because we as a family have sadly gained knowledge. It is a skill to have a dying relative. But also because society as a whole has changed. When the elder gran hallucinated, it was a sign of her imminent death and dementia, and treated as such. Younger gran was treated as a normal patient, in spite of her 87 years, and lived to enjoy more health and activity. At the exact same hospital, with 22 years difference.
Elderly people can show signs of dementia just because they lack water or protein. And truly demented patients can be treated with appropriate therapies.
I am trying not to feel guilt about those who were treated badly. I loved my grandfather, and every single day I think about his painful end.
And obviously, I'd never blame anyone who found themselves in my situation, ever. But I do think we all should think about improving quality of life for the elderly, and for the dying. We will be there ourselves at a point.
In that much wider context, I think euthanasia is a digression, wether you are Sarah Palin screaming about death panels or you are some Swiss doctor offering freakish services for the rich. Normal people need to have good lives and deaths.
posted by mumimor at 4:04 PM on April 3, 2013 [1 favorite]
It's in my future based on both sides of the family. I live alone and far removed from younger relatives. His writing is everything I fear.
posted by mightshould at 4:59 PM on April 3, 2013 [1 favorite]
posted by mightshould at 4:59 PM on April 3, 2013 [1 favorite]
I am currently a primary caregiver (along with my mother) for my father, who has a form of dementia unrelated to Alzheimer's. We had him in a nursing home for three years, but recently their charges over insurance based on the assistance needed with his activities of daily living (ADL score) became impossible to handle, so we have had to do the other thing that's impossible -- caring for him at home. He exists in a perpetual moment of "I need to pee", "I want something to eat" (often leading him to eat whatever he encounters, such as any paper left out), and often enough to be a problem, "I need to leave to go see my wife". We need to have someone watching him 24/7, and it's only possible because they raised three of their grandchildren (my brother is in another state and both physically and mentally done).
I can honestly say that I endorse suicide not simply because I wouldn't want to "live like a vegetable" or whatever metaphor you prefer, but because I simply can't imagine myself putting the rest of my family through this hell.
But do people ever actually do this? Are there any statistics?
Someone may have numbers, but it certainly does happen.
posted by dhartung at 5:20 PM on April 3, 2013
I can honestly say that I endorse suicide not simply because I wouldn't want to "live like a vegetable" or whatever metaphor you prefer, but because I simply can't imagine myself putting the rest of my family through this hell.
But do people ever actually do this? Are there any statistics?
Someone may have numbers, but it certainly does happen.
posted by dhartung at 5:20 PM on April 3, 2013
Heartrending reading. What a brave and good man for writing this, sharing his journey for others, who may at some time be diagnosed or care about somebody diagnosed with Alzheimer's.
My loving encouragement to David Hilfiker and to those who love him.
My very dear neighbor, Vanya, was diagnosed with Alzheimer's at 70. When she told me that I felt that she and I were both in a kind of shared grieving for the gradual loss of her mental faculties over the next 10 years of her life. It was deeply sad.
She was a close friend for over 20 years and made a terrible error at the end of her life. She was beautiful, talented and brilliant. An actress, who became a therapist in her later years. She exercised every day, ate all the right things, walked a lot, lived peacefully. At age 70 she started to get Alzheimer's symptoms. It was confirmed at the Wright Center for the Aging here in NYC, where she went for meds and therapy. Like this author, David, she knew what was coming down the pike and did everything in her power to prevent its early onset.
I was her closest friend but just as she had her first Alzheimer's crisis in 2008, getting lost, forgetting where she was and ending up being taken to the hospital, where she was kept against her will, I was diagnosed with late stage thyroid cancer and in the middle of the arduous treatment for that. I couldn't help her when she needed my help the most. Tears come to my eyes writing that.
Just before she had this crisis, she made a Will and Living Will, giving power of attorney to three people who basically abandoned her at the end of her life, gutted her bank account, went against all her wishes and created hell for her, putting Vanya in a nursing home in the Bronx, where she lived the last miserable, lonely three years of her life. I felt such anguish, when the person who took over Vanya's life dumped her in a nursing home, rather than hire a live-in caretaker, which was financially feasible for at least the year and a half when Vanya was still quite lucid.
Vanya died at 83. The first wandering crisis she had at 80. So it was 'only' 3 years she was incarcerated in a nursing home. The three nursing homes for those with Alzheimer's that I visited were all truly a nightmare. There are people lying in a vegetative state who do nothing but every couple of hours scream uncontrollably, people quasi-alive. These places are packed with angry, uncaring, impatient 'nurses', who seem to be fed up and want the patients to die. Abuse of the patients is routine. Presents I brought disappeared, clothes I brought disappeared. All power is taken away from the inmates, they lead lives of utter impotence. One of their only freedoms as people by the time Alzheimer's sets in is to able to say the word no, to refuse, to be stubborn, which, sadly ends up isolating them more from friendly interactions.
It was a terrible irony that Vanya was so fit all her life, was so careful with what she ate. Her physical good health prolonged her misery.
When death came it was a relief and mourning at the same time, although I'd mourned her loss for years before the actual death.
One conclusion I've come to as an adult, living in the city, with no family at hand, is to work on both setting up and being a part of a caregiver's network, to plan on being there for others and hope that a network is there if I need it. This is an excellent website for setting up that kind of thing. It's called Caregiver's Survival Network. I encourage all adults to get a well thought out Living Will (free online, printable) in place with people who will actually do what you would like at the end of your life or in case of a catastrophic crisis, in which your life is basically in the hands of others.
posted by nickyskye at 8:45 PM on April 3, 2013 [5 favorites]
My loving encouragement to David Hilfiker and to those who love him.
My very dear neighbor, Vanya, was diagnosed with Alzheimer's at 70. When she told me that I felt that she and I were both in a kind of shared grieving for the gradual loss of her mental faculties over the next 10 years of her life. It was deeply sad.
She was a close friend for over 20 years and made a terrible error at the end of her life. She was beautiful, talented and brilliant. An actress, who became a therapist in her later years. She exercised every day, ate all the right things, walked a lot, lived peacefully. At age 70 she started to get Alzheimer's symptoms. It was confirmed at the Wright Center for the Aging here in NYC, where she went for meds and therapy. Like this author, David, she knew what was coming down the pike and did everything in her power to prevent its early onset.
I was her closest friend but just as she had her first Alzheimer's crisis in 2008, getting lost, forgetting where she was and ending up being taken to the hospital, where she was kept against her will, I was diagnosed with late stage thyroid cancer and in the middle of the arduous treatment for that. I couldn't help her when she needed my help the most. Tears come to my eyes writing that.
Just before she had this crisis, she made a Will and Living Will, giving power of attorney to three people who basically abandoned her at the end of her life, gutted her bank account, went against all her wishes and created hell for her, putting Vanya in a nursing home in the Bronx, where she lived the last miserable, lonely three years of her life. I felt such anguish, when the person who took over Vanya's life dumped her in a nursing home, rather than hire a live-in caretaker, which was financially feasible for at least the year and a half when Vanya was still quite lucid.
Vanya died at 83. The first wandering crisis she had at 80. So it was 'only' 3 years she was incarcerated in a nursing home. The three nursing homes for those with Alzheimer's that I visited were all truly a nightmare. There are people lying in a vegetative state who do nothing but every couple of hours scream uncontrollably, people quasi-alive. These places are packed with angry, uncaring, impatient 'nurses', who seem to be fed up and want the patients to die. Abuse of the patients is routine. Presents I brought disappeared, clothes I brought disappeared. All power is taken away from the inmates, they lead lives of utter impotence. One of their only freedoms as people by the time Alzheimer's sets in is to able to say the word no, to refuse, to be stubborn, which, sadly ends up isolating them more from friendly interactions.
It was a terrible irony that Vanya was so fit all her life, was so careful with what she ate. Her physical good health prolonged her misery.
When death came it was a relief and mourning at the same time, although I'd mourned her loss for years before the actual death.
One conclusion I've come to as an adult, living in the city, with no family at hand, is to work on both setting up and being a part of a caregiver's network, to plan on being there for others and hope that a network is there if I need it. This is an excellent website for setting up that kind of thing. It's called Caregiver's Survival Network. I encourage all adults to get a well thought out Living Will (free online, printable) in place with people who will actually do what you would like at the end of your life or in case of a catastrophic crisis, in which your life is basically in the hands of others.
posted by nickyskye at 8:45 PM on April 3, 2013 [5 favorites]
My 90 year old mother-in-law has Alzheimer's. Her husband died last fall and she has forgotten his death and then experienced the first shock of loss over and over again. Sometimes it was really tempting to just lie to her and say he's out running some errands or something. We didn't, partly out of (possibly misguided) respect and partly
because she sometimes actually can remember things and she's confused enough without getting contradictory information from her relatives. She apparently has enough capacity left that lately she's progressed to sadly asking us if it's true that he's gone, which is still heartbreaking but better than the endless cycle of stunned disbelief, anger, and grief.
posted by gamera at 8:50 PM on April 3, 2013
because she sometimes actually can remember things and she's confused enough without getting contradictory information from her relatives. She apparently has enough capacity left that lately she's progressed to sadly asking us if it's true that he's gone, which is still heartbreaking but better than the endless cycle of stunned disbelief, anger, and grief.
posted by gamera at 8:50 PM on April 3, 2013
« Older If you take this podcast as a joke you'll have to... | Tell 'em Big Bertha sent ya! Newer »
This thread has been archived and is closed to new comments
I'm not sure if this sentence is supposed to make me laugh, but it did.
posted by Avenger at 11:28 PM on April 2, 2013 [1 favorite]