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> 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 ma

> 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.

kombucha111 6y ago
Same. I'd also love to know. Especially for those among us that don't live in places with compassionate assisted suicide.
- melling 6y ago
  Here’s another idea. Let’s figure out a way to cure, or simply slow, the disease. Think it can be done within two decades? The mRNA Coronavirus vaccines were produced in under a year. That was after years of R&D, of course. Now maybe it’s possible to convince people to spend more on fundamental medical research. UPDATE I see my comments are not appreciated. We’re going with “just shoot me if this happens to me” Anyway, maybe the seed investments by Gates and Bezos will eventually lead to a treatment. https://www.biospace.com/article/bill-gates-and-jeff-bezos-team-to-fund-alzheimer-s-diagnostics/ https://www.biospace.com/article/bill-gates-and-jeff-bezos-t...
  - tmp538394722 6y ago
    It’s great that people are working to treat or cure this terrible disease. However in the meanwhile, there is unbelievable damage and burden on family members that the sick person least of all wants, as articulated by Jo when he still had his faculties. And there’s a long tail of other diseases. I believe we’ll make progress on those too, but this does not preclude mercy for the victim of the disease.
    - melling 6y ago
      Yes, my aunt who died in late 2019 had some form of dementia. She was only in her mid 70s. Sure, we’ll make slow progress and eventually get a treatment. However, this is likely a very difficult disease to treat. I’m simply pointing out that we have another option to make faster progress.
lqet 6y ago
> 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.
- Konohamaru 6y ago
  This doesn't sound all that bad. There are people who lost the will to live in Nazi extermination camps or who died of radiation sickness from the atom bomb. Compared to those two, this is a very pleasant way to exit life.
  - lqet 6y ago
    None of the patients I came in contact with over one year (around 20) had any pain. Physically, they were all surprisingly healthy.
  - 2OEH8eoCRo0 6y ago
    It's more tough for the family than anything. My girlfriend works with elderly with dementia and says her residents are all still mostly happy despite the disease.
maxerickson 6y ago
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.
- hobby-coder-guy 6y ago
  What do you mean “removing yourself from the equation”? Abandonment?
  - morelisp 6y ago
    Leaving someone with advanced Alzheimer’s in professional care full time is not abandonment. Fiction rarely shows how long it can go on with virtually no memories left and no ability to care for oneself for even a couple hours. (The fictional danger is often shows as the person forgetting where they live and walking off - the real danger is that they will shit themselves, not tell anyone, and get painful skin issues.) That’s before you get into the emotional side. How many times a year do you think you could meet your mother and have her not know you from a stranger? No, seeing her every day doesn’t help either - it actually makes it worse for both of you. Alzheimer’s can be such a slow death you’ve already grieved through “acceptance” while your loved one is still, medically speaking, ‘alive.’
    - steve_adams_86 6y ago
      The last part about grieving through loss while the person is still alive is very apt. When my mom passed after brain cancer took her memories, she survived for so long with no idea who or where she was that her body dying was a relief and the grieving had mostly occurred a year before. Well, I’ll never finish grieving that loss I guess. I realize all the time that there’s more to grieve. But the shock was certainly not there. The sense of loss wasn’t. That was difficult in itself; to tell people she passed away and not be as sad as people expected. I felt like something must be wrong with me at the time. In retrospect, she had just died much sooner than her body did. It’s an especially strange human experience I think.
asdfasgasdgasdg 6y ago
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.
- deleted 6y ago
  [deleted]
- cgriswald 6y ago
  > But of course we are far from having the ability to measure or even formally describe this concept. I read—within recent memory—"Consciousness and the Brain: Deciphering How the Brain Codes Our Thoughts" by Stanislas Dehaene and was very surprised by just how much consciousness research is being done and how much has been learned. It was really very interesting and I think this research has the potential to make the trade offs between suffering and possible recovery much easier to answer. (This isn't to disagree with you, just to express my surprise that, although I agree with you, researchers actually know/suspect a lot more than I thought they did.)
- paulryanrogers 6y ago
  It's probably possible to chip yourself with a kind of dead-mans switch that releases poison if not acknowledged periodically.
  - danbmil99 6y ago
    I'm 61 and have PD. I'm planning to do exactly what you propose here. I think the degree of suffering and misery that comes with death due to attitudes that are imposed on us by our Puritan Christian Heritage is a serious tragedy. I can't think of a reasonable argument against my position. My body, my life, my decision. And I have the right to make that decision while I'm mentally competent, and have it respected if/when I'm not.
fortran77 6y ago
I had a cousin with Pick's disease, which is a rare form of early-onset dementia which has similar symptoms to Alzheimer's. (See https://www.dementia.org/picks-disease-and-dementia 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.
cosmiccatnap 6y ago
A will is the best thing we have to a "framework" because that term implies a series of logical steps and paradigms that can be followed to accomplish a goal. What you have here is the failure of the existing framework that is your existence. a will is the gracefullyCloseConn() of your life and until science has a solution for this, it's really all we have to say what we want done should something this awful befall us.

kombucha111 6y ago

Same. I'd also love to know. Especially for those among us that don't live in places with compassionate assisted suicide.

melling 6y ago
Here’s another idea. Let’s figure out a way to cure, or simply slow, the disease. Think it can be done within two decades? The mRNA Coronavirus vaccines were produced in under a year. That was after years of R&D, of course. Now maybe it’s possible to convince people to spend more on fundamental medical research. UPDATE I see my comments are not appreciated. We’re going with “just shoot me if this happens to me” Anyway, maybe the seed investments by Gates and Bezos will eventually lead to a treatment. https://www.biospace.com/article/bill-gates-and-jeff-bezos-team-to-fund-alzheimer-s-diagnostics/ https://www.biospace.com/article/bill-gates-and-jeff-bezos-t...
- tmp538394722 6y ago
  It’s great that people are working to treat or cure this terrible disease. However in the meanwhile, there is unbelievable damage and burden on family members that the sick person least of all wants, as articulated by Jo when he still had his faculties. And there’s a long tail of other diseases. I believe we’ll make progress on those too, but this does not preclude mercy for the victim of the disease.
  - melling 6y ago
    Yes, my aunt who died in late 2019 had some form of dementia. She was only in her mid 70s. Sure, we’ll make slow progress and eventually get a treatment. However, this is likely a very difficult disease to treat. I’m simply pointing out that we have another option to make faster progress.

lqet 6y ago

> 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.

Konohamaru 6y ago
This doesn't sound all that bad. There are people who lost the will to live in Nazi extermination camps or who died of radiation sickness from the atom bomb. Compared to those two, this is a very pleasant way to exit life.
- lqet 6y ago
  None of the patients I came in contact with over one year (around 20) had any pain. Physically, they were all surprisingly healthy.
- 2OEH8eoCRo0 6y ago
  It's more tough for the family than anything. My girlfriend works with elderly with dementia and says her residents are all still mostly happy despite the disease.

maxerickson 6y ago

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.

hobby-coder-guy 6y ago
What do you mean “removing yourself from the equation”? Abandonment?
- morelisp 6y ago
  Leaving someone with advanced Alzheimer’s in professional care full time is not abandonment. Fiction rarely shows how long it can go on with virtually no memories left and no ability to care for oneself for even a couple hours. (The fictional danger is often shows as the person forgetting where they live and walking off - the real danger is that they will shit themselves, not tell anyone, and get painful skin issues.) That’s before you get into the emotional side. How many times a year do you think you could meet your mother and have her not know you from a stranger? No, seeing her every day doesn’t help either - it actually makes it worse for both of you. Alzheimer’s can be such a slow death you’ve already grieved through “acceptance” while your loved one is still, medically speaking, ‘alive.’
  - steve_adams_86 6y ago
    The last part about grieving through loss while the person is still alive is very apt. When my mom passed after brain cancer took her memories, she survived for so long with no idea who or where she was that her body dying was a relief and the grieving had mostly occurred a year before. Well, I’ll never finish grieving that loss I guess. I realize all the time that there’s more to grieve. But the shock was certainly not there. The sense of loss wasn’t. That was difficult in itself; to tell people she passed away and not be as sad as people expected. I felt like something must be wrong with me at the time. In retrospect, she had just died much sooner than her body did. It’s an especially strange human experience I think.

asdfasgasdgasdg 6y ago

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.

deleted 6y ago
[deleted]
cgriswald 6y ago
> But of course we are far from having the ability to measure or even formally describe this concept. I read—within recent memory—"Consciousness and the Brain: Deciphering How the Brain Codes Our Thoughts" by Stanislas Dehaene and was very surprised by just how much consciousness research is being done and how much has been learned. It was really very interesting and I think this research has the potential to make the trade offs between suffering and possible recovery much easier to answer. (This isn't to disagree with you, just to express my surprise that, although I agree with you, researchers actually know/suspect a lot more than I thought they did.)
paulryanrogers 6y ago
It's probably possible to chip yourself with a kind of dead-mans switch that releases poison if not acknowledged periodically.
- danbmil99 6y ago
  I'm 61 and have PD. I'm planning to do exactly what you propose here. I think the degree of suffering and misery that comes with death due to attitudes that are imposed on us by our Puritan Christian Heritage is a serious tragedy. I can't think of a reasonable argument against my position. My body, my life, my decision. And I have the right to make that decision while I'm mentally competent, and have it respected if/when I'm not.

fortran77 6y ago

I had a cousin with Pick's disease, which is a rare form of early-onset dementia which has similar symptoms to Alzheimer's. (See https://www.dementia.org/picks-disease-and-dementia 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.

cosmiccatnap 6y ago

A will is the best thing we have to a "framework" because that term implies a series of logical steps and paradigms that can be followed to accomplish a goal. What you have here is the failure of the existing framework that is your existence. a will is the gracefullyCloseConn() of your life and until science has a solution for this, it's really all we have to say what we want done should something this awful befall us.