The whole situation was terrible, but given the context, I wouldn't describe his passing as "sad"
"Early one morning, a week and a half after Jo stopped eating, he peacefully exited the world with the people who loved him most by his side. He had not spent a single day in a hospital or long-term care facility."
> Jo was adamant that he didn’t want to end up in a long-term care facility like the one in which he’d visited his mother—sometimes with Robin along for the ride when they began dating as teenagers in Kapuskasing, Ont.—and he hoped that Canada’s legalization of assisted death would allow him to avoid that. But when medical assistance in dying became law in 2016, excluded were “advance requests” that would have permitted people with dementia to set out terms for their death while they still had capacity to consent.
Found this sobering. And somewhat relevant to my life, in a tangential way.
My grandfather passed away from his second bout with lung cancer, a couple years after Alzheimer's had started to take him over, around 5 years ago. He was a miner on the Iron Range in Minnesota, where my family is, so that explained the lung cancer.
My grandma passed away a week ago from COVID. She tested positive for it the weekend before, in her nursing home. The reason she was in a nursing home is that her memory had been fading, up until it was decided that she couldn't take care of her house alone anymore, around a year ago.
Her memory was to the point where she'd circle back to things she already told me about 20 minutes before. But she was still cogent and it was still her.
But she didn't like living in the nursing home, because it didn't feel like much of a life. More of a routine. All of our conversation were extremely positive--that's who she was, afterall--but they were always somewhat morose. She always made sure to devote time in each conversation to telling me how much she loved me, was proud of me, and I'd do the same, reminiscing on the memories we had of me staying with them over the summer as a kid.
But it was pretty obvious to me--even though she never announced she knew she was going to die without being able to return to that life--that she wanted to make sure I knew how she felt, that there was no room for me to have missed the opportunity to know that, and that she was doing that on purpose, with intent.
Some of the hardest aspects to her death come with the circumstances. When her oxygen dropped Thursday night, I couldn't call her. No one could. When she made it to the hospital, her oxygen dropped so far, so quick that all they could do was ensure her body didn't hurt as the virus suffocated her brain. No one could say goodbye, and she didn't get to say hers.
Now we're learning to grieve remotely. My mom has MS, so it's not even a question of gambling on the risks of a family gathering for me to see her. Long phone conversations. It doesn't get easier, but it gets more normal.
Part of me knows that death wasn't something my Grandma feared. It was the inevitable next step in her life, cornered by her body's incapacity to change it. I know she would've preferred for us to be there with her, and for her to have a chance to cry over it and say goodbye to the people she loved, the people that loved her.
> Families of people with dementia land in different places on this issue, but to her, it’s beyond question that Jo is not here anymore; most everything that made him Jo has been stolen.
This was very sad, but it's a good articulation of the circumstances where I would rather die than continue living. Has anyone seen a good framework to help think through scenarios like these as part of a will or end-of-life directive? I've expressed a version of the above to my loved ones, but I'd like to be much more prescriptive about my wishes to take the decision-making burden off my family should it come to that.
There isn't a framework. One of the things the article talks about is that the assisted death law in Canada requires competency at the time of death. Without looking, I expect it's often similar in other places.
When my mom's dementia progressed from a state where she needed a bit of help to where she needed regular attention, I had no qualms about removing myself from the equation, because I think that if she were healthy she would want me to live my life for myself. If that sounds right to you, it's something you can tell your family.
I sort of feel the same? The main issue is I don't want my family to be burdened with the needs of a creature that looks like me and is continuous with me but isn't me. The suffering of that creature is a secondary concern, but also relevant.
I don't think in the US or Canada there is any way to legally end your life at that point. Maybe nowhere in the world. You would need to end it while still competent. That would be a difficult line to tread because you don't want to forgo good days and with dementia the good days are the ones where you are competent. By the time the days are bad you can no longer competently end your life.
In an ideal world you could specify some kind of ego-distance from yourself where a painless shutdown would be triggered. But of course we are far from having the ability to measure or even formally describe this concept.
His sister (my other cousin) devoted a decade of her life taking care of him. (Neither cousin had married). Extremely sad and the effects traumatized the entire family. It is unimaginably sad to see a younger person succumb to dementia.
At no time did anyone even think of assisted suicide. I can't imagine how this can be done fairly unless someone is of sound mind.
> good articulation of the circumstances where I would rather die than continue living.
I did my alternative civilian service in a nursing home for people with dementia when I was 19. I have noticed 6 stages:
1) Fear that something is wrong with their memory and incredible efforts to hide it (this is usually before they live in a nursing home).
2) Anger, shame and desperation.
3) Internalization, they then either make melancholy jokes ("My head's not what it's used to be"), or they completely give themselves up. Often they refuse to eat. We did not have such a case, but I assume that some patients in this stage commit suicide.
4) Total confusion (that happens when the internalization is also forgotten), patients still have enough memory capacity to realize that something is terribly wrong (they usually try to return "home" or are searching for their children/spouses/parents), but they don't understand that they are ill anymore. The nursing home where I worked had codes on every door, but in this stage some patients were still able to trick the staff and wander off.
In stage 5), many patients fell into a child-like trance where they just consumed food and watched the world in complete wonder. I never had the feeling that they were unhappy, in fact they often laughed (e.g. when they saw children, when we played songs or when you just sat with them for a while). We had one old lady who happily recited poems she had learned in elementary school all day.
I never want to end in stage 6, but I am quite certain that the patients in that state had no mental capacity left to experience it.
Not an early onset case, of course, but I remember receiving the exact same Christmas gift from my grandmother two times in a row. Each time she seemed delighted about the gift idea. Everybody just joked that she bought too much of it initially and was now slowly clearing her storage. After another 3 years without any obvious symptoms (she took care of the house, drove her car, went shopping, used her bank card, managed all correspondence with banks and insurances), my grandfather mentioned to her something that implied that her mother was dead (she had been for over 15 years). She didn't remember and had a complete breakdown.
Being affected by this when you are 40 is just heartbreaking.
Yeah, sure. Just don't eat, and that'll prevent alzheimer's.
If you study history, you have to reconcile these views with the fact that we've been wrong about every medical development until recent history. At one point we were killing cats to curtail the black plague, when in fact it was the fleas that were the cause.
I've recently discovered Everywhere at the End of Time by the Caretaker (James Kirby). It's a series of six music albums exploring and depicting memory loss, Alzheimer's disease and dementia. I wish I had the writing skills necessary to convey the emotional turmoil I went through by listening to the six stages in one sleepless night. https://www.youtube.com/watch?v=wJWksPWDKOc I also appreciated the attention to the details from the track titles to the choice of album covers. The last image – a broken canvas seen from behind – is especially haunting. It's the kind of experience that makes you re-evaluate many life choices.
> But when medical assistance in dying became [Canadian] law in 2016, excluded were “advance requests” that would have permitted people with dementia to set out terms for their death while they still had capacity to consent.
Tragic. In my country no form of assisted suicide is yet legal, but I've watched my grandmother languish and waste away like this and--should it come to that--I'm firm in my resolve not to subject my family to anything like that experience. People need to have the right to choose to end their own lives with dignity; is "death tourism" a thing?
Yes "death tourism" is a thing and almost a business (business side is highly regulated but some association are borderline). Here in Switzerland where assisted suicide is legal, people from all over Europe are coming to die.
If this happened to me, I would tell my family to kill me in 1 year. We could setup an assisted suicide - I would feel it cruel to force me to live in such a state. If my family refused I would just go sky diving during month 5 and have an amazing decent down. The idea of people caring for me is worse than hell or torture. People should be allowed to die.
My paternal grandmother has Alzheimer’s, just like her mother before her, and it makes me worry for my father, myself, and my brother. I am often hyper vigilant to any perceived changes in my dad’s mental acuity and I worry that it hurts our relationship, even though I try to stay focused on the current moments I’m enjoying with him at any given time.
So far all seems well with my dad other than some expected age-related slowdowns in memory and processing, at least from my perspective. I can’t imagine what it would be like to deal with this so early in life.
I read “Being Mortal” by Atul Gawande this year and it was very helpful in some of the conversations I’ve since had with my family about the future and how we should think about death. I wouldn’t have had the courage to ask my parents what they cared about in life and in death before reading the book, and for that courage I am grateful. I recommend it to everyone because death is the only fate we all share.
I hear ya. My maternal grandfather died of Alzheimer's, and my mom died of Frontotemperal Dementia at 67. I'm worried I'll get one of those, especially the latter. I'm hyper vigilant about myself as well.
My late wife suffered from early-onset alzheimer's disease and I went to see this movie and I felt that it was very far from the reality as I experienced it. Yes, it does portrait many of the things that happen to people with early-onset dementia, but what it left out, is often the insight on what the disease has on the people around them, something that Alice in the movie has until almost the end of the movie. I also feel that the movie ended far to early.
Also in the cases that it is not running in a family (which is about half of the cases), it often takes years before a diagnoses is made. Often, people suffer from a burn-out years before the final diagnosis is made. Often, they show major behavioral changes, before they begin to show the first visible changes. In the six years before the diagnoses was made, my wife, who did not originate from my home country, managed to improve her fluency in the national language.
2 other very good movies are the Canadian "Away from Her" and the French "Amour". But the plot twist of these two is that they are a view on the ones that remain and see their loved ones fading away.
My wife's father (my father-in-law) passed away just 2 days ago at 75 years old with severe dementia due to a series of mini-strokes in his brain over the last ~5-6 years. I can't remember the medical term, but due to weakened and brittle blood vessels in the brain from plaque build-ups within the vessels. Doctors said he was in perfect health other than this single reason. With each mini-stroke, you could see him get knocked down step by step. He'd recover a little, but never back to baseline (which kept getting lower).
Seeing him go from the strong-handshaking, always smiling Minnesota corn farmer patriarch who regularly would outwork me when I'd be helping him with house projects....to seeing him take his last breath surrounded by his wife, 4 daughters, several granddaughters, and me...was heartbreaking.
...from the article, Jo was 40 years old. I'm 47 as I type this and cannot comprehend that happening so early.
One of medicine's most elementary failings is providing a reasonable framework for death in these diagnoses. I have to suspect the inability to die on one's terms stems from the economic incentives of powerful interests who profit from housing these patients for years, sometimes decades.
My grandfather died like this of Alzheimers. My dad vowed to not follow his path should it come to that.
What are the chances we'll find a cure for Alzheimer's using new mRNA vaccine technology?
Edit: Perhaps I should clarify that vaccine and mRNA based treatment approaches for Alzheimer's aren't exactly new and have shown some promise in the past.
For a genetic variant like the one described here, there might be a chance -- although getting artificial mRNA to target specific cells in your brain seems like it would be an achievement on the tail end of the development.
Very strange we have to starve people to death (while sedated) so they can have their ultimate release. We'd never do something like that to a beloved pet.
I don't get it.
We do allow it in certain states/countries. But when it comes to dementia, it's a difficult question. A person's mind is shattered by the disease. 2 years before death, they might say "I want to die when I can't remember my childrens' names". Then 6 months later, they turn into a completely different person, forgetting everyone and refusing to see a doctor, let alone give the necessary consent to allow someone to administer the final drug.
[+] [-] mrleiter|5 years ago|reply
[1] https://www.macleans.ca/news/canada/they-came-to-celebrate-j...
[+] [-] JshWright|5 years ago|reply
"Early one morning, a week and a half after Jo stopped eating, he peacefully exited the world with the people who loved him most by his side. He had not spent a single day in a hospital or long-term care facility."
[+] [-] metamet|5 years ago|reply
Found this sobering. And somewhat relevant to my life, in a tangential way.
My grandfather passed away from his second bout with lung cancer, a couple years after Alzheimer's had started to take him over, around 5 years ago. He was a miner on the Iron Range in Minnesota, where my family is, so that explained the lung cancer.
My grandma passed away a week ago from COVID. She tested positive for it the weekend before, in her nursing home. The reason she was in a nursing home is that her memory had been fading, up until it was decided that she couldn't take care of her house alone anymore, around a year ago.
Her memory was to the point where she'd circle back to things she already told me about 20 minutes before. But she was still cogent and it was still her.
But she didn't like living in the nursing home, because it didn't feel like much of a life. More of a routine. All of our conversation were extremely positive--that's who she was, afterall--but they were always somewhat morose. She always made sure to devote time in each conversation to telling me how much she loved me, was proud of me, and I'd do the same, reminiscing on the memories we had of me staying with them over the summer as a kid.
But it was pretty obvious to me--even though she never announced she knew she was going to die without being able to return to that life--that she wanted to make sure I knew how she felt, that there was no room for me to have missed the opportunity to know that, and that she was doing that on purpose, with intent.
Some of the hardest aspects to her death come with the circumstances. When her oxygen dropped Thursday night, I couldn't call her. No one could. When she made it to the hospital, her oxygen dropped so far, so quick that all they could do was ensure her body didn't hurt as the virus suffocated her brain. No one could say goodbye, and she didn't get to say hers.
Now we're learning to grieve remotely. My mom has MS, so it's not even a question of gambling on the risks of a family gathering for me to see her. Long phone conversations. It doesn't get easier, but it gets more normal.
Part of me knows that death wasn't something my Grandma feared. It was the inevitable next step in her life, cornered by her body's incapacity to change it. I know she would've preferred for us to be there with her, and for her to have a chance to cry over it and say goodbye to the people she loved, the people that loved her.
[+] [-] snicksnak|5 years ago|reply
[0] https://www.wired.com/story/lee-holloway-devastating-decline...
[+] [-] dang|5 years ago|reply
[+] [-] inglor_cz|5 years ago|reply
[+] [-] apple4ever|5 years ago|reply
And now I wait in fear it will happen to me too.
That was a great article. Sad I missed the original discussion.
[+] [-] wil421|5 years ago|reply
[+] [-] baby|5 years ago|reply
[+] [-] eastbayjake|5 years ago|reply
This was very sad, but it's a good articulation of the circumstances where I would rather die than continue living. Has anyone seen a good framework to help think through scenarios like these as part of a will or end-of-life directive? I've expressed a version of the above to my loved ones, but I'd like to be much more prescriptive about my wishes to take the decision-making burden off my family should it come to that.
[+] [-] maxerickson|5 years ago|reply
When my mom's dementia progressed from a state where she needed a bit of help to where she needed regular attention, I had no qualms about removing myself from the equation, because I think that if she were healthy she would want me to live my life for myself. If that sounds right to you, it's something you can tell your family.
[+] [-] asdfasgasdgasdg|5 years ago|reply
I don't think in the US or Canada there is any way to legally end your life at that point. Maybe nowhere in the world. You would need to end it while still competent. That would be a difficult line to tread because you don't want to forgo good days and with dementia the good days are the ones where you are competent. By the time the days are bad you can no longer competently end your life.
In an ideal world you could specify some kind of ego-distance from yourself where a painless shutdown would be triggered. But of course we are far from having the ability to measure or even formally describe this concept.
[+] [-] fortran77|5 years ago|reply
(See https://www.dementia.org/picks-disease-and-dementia )
His sister (my other cousin) devoted a decade of her life taking care of him. (Neither cousin had married). Extremely sad and the effects traumatized the entire family. It is unimaginably sad to see a younger person succumb to dementia.
At no time did anyone even think of assisted suicide. I can't imagine how this can be done fairly unless someone is of sound mind.
[+] [-] lqet|5 years ago|reply
I did my alternative civilian service in a nursing home for people with dementia when I was 19. I have noticed 6 stages:
1) Fear that something is wrong with their memory and incredible efforts to hide it (this is usually before they live in a nursing home).
2) Anger, shame and desperation.
3) Internalization, they then either make melancholy jokes ("My head's not what it's used to be"), or they completely give themselves up. Often they refuse to eat. We did not have such a case, but I assume that some patients in this stage commit suicide.
4) Total confusion (that happens when the internalization is also forgotten), patients still have enough memory capacity to realize that something is terribly wrong (they usually try to return "home" or are searching for their children/spouses/parents), but they don't understand that they are ill anymore. The nursing home where I worked had codes on every door, but in this stage some patients were still able to trick the staff and wander off.
In stage 5), many patients fell into a child-like trance where they just consumed food and watched the world in complete wonder. I never had the feeling that they were unhappy, in fact they often laughed (e.g. when they saw children, when we played songs or when you just sat with them for a while). We had one old lady who happily recited poems she had learned in elementary school all day.
I never want to end in stage 6, but I am quite certain that the patients in that state had no mental capacity left to experience it.
[+] [-] kombucha111|5 years ago|reply
[+] [-] cosmiccatnap|5 years ago|reply
[deleted]
[+] [-] lqet|5 years ago|reply
Not an early onset case, of course, but I remember receiving the exact same Christmas gift from my grandmother two times in a row. Each time she seemed delighted about the gift idea. Everybody just joked that she bought too much of it initially and was now slowly clearing her storage. After another 3 years without any obvious symptoms (she took care of the house, drove her car, went shopping, used her bank card, managed all correspondence with banks and insurances), my grandfather mentioned to her something that implied that her mother was dead (she had been for over 15 years). She didn't remember and had a complete breakdown.
Being affected by this when you are 40 is just heartbreaking.
[+] [-] Empact|5 years ago|reply
[+] [-] Mc_Big_G|5 years ago|reply
[+] [-] sillysaurusx|5 years ago|reply
If you study history, you have to reconcile these views with the fact that we've been wrong about every medical development until recent history. At one point we were killing cats to curtail the black plague, when in fact it was the fleas that were the cause.
We just don't know. And it's fine not to know. https://www.youtube.com/watch?v=42QuXLucH3Q
[+] [-] Red_Tarsius|5 years ago|reply
[+] [-] kibwen|5 years ago|reply
Tragic. In my country no form of assisted suicide is yet legal, but I've watched my grandmother languish and waste away like this and--should it come to that--I'm firm in my resolve not to subject my family to anything like that experience. People need to have the right to choose to end their own lives with dignity; is "death tourism" a thing?
[+] [-] greatpatton|5 years ago|reply
[+] [-] ransom1538|5 years ago|reply
[+] [-] tmp538394722|5 years ago|reply
It turns out that in practice it is quite hard to actually get your loved ones to follow through with clandestinely offing you.
And the state doesn’t offer a mechanism for any kind of advanced end of life request.
[+] [-] unknown|5 years ago|reply
[deleted]
[+] [-] zionic|5 years ago|reply
[+] [-] redelbee|5 years ago|reply
So far all seems well with my dad other than some expected age-related slowdowns in memory and processing, at least from my perspective. I can’t imagine what it would be like to deal with this so early in life.
I read “Being Mortal” by Atul Gawande this year and it was very helpful in some of the conversations I’ve since had with my family about the future and how we should think about death. I wouldn’t have had the courage to ask my parents what they cared about in life and in death before reading the book, and for that courage I am grateful. I recommend it to everyone because death is the only fate we all share.
[+] [-] apple4ever|5 years ago|reply
[+] [-] bergstromm466|5 years ago|reply
[+] [-] fjfaase|5 years ago|reply
Also in the cases that it is not running in a family (which is about half of the cases), it often takes years before a diagnoses is made. Often, people suffer from a burn-out years before the final diagnosis is made. Often, they show major behavioral changes, before they begin to show the first visible changes. In the six years before the diagnoses was made, my wife, who did not originate from my home country, managed to improve her fluency in the national language.
[+] [-] diego_moita|5 years ago|reply
2 other very good movies are the Canadian "Away from Her" and the French "Amour". But the plot twist of these two is that they are a view on the ones that remain and see their loved ones fading away.
[+] [-] robodale|5 years ago|reply
My wife's father (my father-in-law) passed away just 2 days ago at 75 years old with severe dementia due to a series of mini-strokes in his brain over the last ~5-6 years. I can't remember the medical term, but due to weakened and brittle blood vessels in the brain from plaque build-ups within the vessels. Doctors said he was in perfect health other than this single reason. With each mini-stroke, you could see him get knocked down step by step. He'd recover a little, but never back to baseline (which kept getting lower).
Seeing him go from the strong-handshaking, always smiling Minnesota corn farmer patriarch who regularly would outwork me when I'd be helping him with house projects....to seeing him take his last breath surrounded by his wife, 4 daughters, several granddaughters, and me...was heartbreaking.
...from the article, Jo was 40 years old. I'm 47 as I type this and cannot comprehend that happening so early.
[+] [-] djohnston|5 years ago|reply
My grandfather died like this of Alzheimers. My dad vowed to not follow his path should it come to that.
[+] [-] soared|5 years ago|reply
One of medicine's most elementary failings is [not] providing a reasonable framework for death in these diagnoses.
[+] [-] shawnz|5 years ago|reply
Edit: Perhaps I should clarify that vaccine and mRNA based treatment approaches for Alzheimer's aren't exactly new and have shown some promise in the past.
[+] [-] mckirk|5 years ago|reply
[+] [-] scott31|5 years ago|reply
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[+] [-] stanski|5 years ago|reply
[+] [-] dang|5 years ago|reply
[+] [-] TaupeRanger|5 years ago|reply
[+] [-] rtx|5 years ago|reply
[+] [-] afrojack123|5 years ago|reply
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