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Comment by eastbayjake | Hacker News Reader

> 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.

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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 believe the competency at time of death requirement is being changed due to the existing limitations being ruled unconstitutional.

Per [0], "This Bill would amend the Criminal Code to allow MAID for eligible persons who wish to pursue a medically assisted death, whether their natural death is reasonably foreseeable or not. The proposed changes will reduce unnecessary suffering in Canada. They will also support greater autonomy and freedom of choice for eligible persons, and provide safeguards to protect those who may be vulnerable."

0. https://www.justice.gc.ca/eng/csj-sjc/pl/ad-am/index.html

Also, right now in Canada, assisted death is not available if your pain is from mental illness.

does alzheimer's really count as mental illness though? I would think it was more of a disability.

Alzheimer’s is a neurological disease with a well-documented physiological pathology and terminal prognosis. Mental illnesses generally lack both of those things. The ethics of assisted suicide for terminal patients are distinct, I think, and it’s understandable than terminal patients were the first to have this right recognized under law.

What do you mean “removing yourself from the equation”? Abandonment?

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.’

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.

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.

> 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.)

It's probably possible to chip yourself with a kind of dead-mans switch that releases poison if not acknowledged periodically.

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.

>I'm planning to do exactly what you propose here.

How, if you don't mind sharing? Something like a passphrase shared with a trusted loved one?

The whole point of the idea is to leave potential accomplices out of the loop -- I don't want my last thoughts to be worry about legal peril to people I love.

Here's one scenario that is feasible today. Imagine an IV drip controlled by a computer. If I enter the correct password when prompted (say once every 24 hours), nothing happens. However if I am prompted repeatedly to enter the password and I do not do so, the IV drip is actuated. The drip contains an end-of-life cocktail.

This puts the onus on me to make an affirmative choice each day to continue to live. If I am unwilling or unable to enter the passcode, that indicates either 1) my condition has deteriorated to the point where I am cognitively or physically so disabled that I cannot remember and physically enter the password, or 2) I am making a conscious choice to end my life.

There is no action to be taken by anyone to cause my death; the decision rests entirely with me, and is effectuated by a machine, not a person.

> This puts the onus on me to make an affirmative choice each day to continue to live. If I am unwilling or unable to enter the passcode, that indicates either 1) my condition has deteriorated to the point where I am cognitively or physically so disabled that I cannot remember and physically enter the password, or 2) I am making a conscious choice to end my life.

Or (3) hardware or software defect exists and has been triggered. Fail-deadly systems are usually disfavored for very sound reasons.

Now, I suppose in this situation you could be convinced enough that you are going to want to die so imminently than the risk/cost of an accidental early trigger is acceptable, though.

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 )

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.

My father is dealing with Lewy body dementia (same thing Robin Williams had) and it's terrible. His memory was bad, then came some terrible hallucinations, and now he's starting to have problems with balance and movement. He's 76.

He was in the hospital one time and they had him chained to his bed because they were scared he would hurt somebody. This is a man who never raised his voice to me even at my worst. I talked to him on the phone he begged me to call the police because he thought he was chained up in a barn that was on fire. The way he described his situation convinced me that it felt 100% real to him. The people around him were trying to kill him.

His medications have helped a bit with the hallucinations. He still sees people around his home and it scares him. The worst part though is that as bad as today is, things are going to get worse.

I just took a commercial DNA test because I'm pretty sure I'm at risk for the same end. I'll do what I can (although it seems like there might not be much) but ultimately I'm going to make sure I'm in control of the end.

If anybody here can point me to information or resources on Lewy body dementia beyond WebMD, I'd be very appreciative.

This is pretty accurate and matches all of my experiences with people suffering from this disease. It is hard on them in the beginning and then it gets to be harder on the relatives and friends. Nothing beats having the same conversation three times per day. I always figured that as long as it makes them happy that it should make me happy but people have varying degrees of tolerance for this and of course your initial relationship with the person factors in heavily there as well.

One of my grandmothers had dementia in her final years, so I watched her go through these stages. I think you've described the stages quite well. In the first two stages, she suffered terribly; I never noticed a stage 3. My grandfather put up a heroic effort to care for her at home well into stage 4, but eventually she had to move into a nursing home, where she spent several more years in stage 5.

But it looked to me like those were some fairly happy years for her. When she was of sound mind, she was always worried about countless things. Now she was cheerful, watching the world in wonder, and occasionally flirting with a fellow resident.

> occasionally flirting with a fellow resident.

Most of them do. Unfortunately, we also had some men in late-stage dementia who were pretty obvious about their sexual interests. Needless to say, this often caused problems with female residents. This is an incredibly different topic to bring up with relatives: we once had to tell the wife of a resident that her husband was happily grabbing breasts all day. Whenever something like this was brought to the attention of relatives, it was usual denial at first, and then accusations that the staff was responsible.

That being said, the neighboring nursing home (for old people without dementia) had an incredibly sweet case where a male and female resident, both over a 100 years old and widowed for decades, slowly started a relationship. By the time I was leaving, they were holding hands all day , going for short walks and he was constantly making her gifts of all kinds. They were like teenagers, completely in love.

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.

I visited my father in a nursing home for years when his mild cognitive impairment had turned into full-blown dementia.

There was always at least one patient screaming to be let out, to go home, or that they were suffering in some way. Screaming the same thing, every ten seconds. Hour after hour.

One shouted "Please!" "Please!" over and over again, in a piteous voice.

Those are the ones who still have some speech faculty left. While I know that many were either unaware of anything (like my father at the end), or lived in some pleasant accommodation, there were several who went through agony.

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.

None of the patients I came in contact with over one year (around 20) had any pain. Physically, they were all surprisingly healthy.

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

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-t...

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.

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.

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