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'I am mine': Alzheimer's at 41 (2018)

macleans.ca

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Re: 'I am mine': Alzheimer's at 41 (2018)

#91

Post by mrleiter »

wdb wrote: post #86
mrleiter wrote: post #84

Earlier quoted context omitted.

Yes, maybe, I understand completely. Still, the final loss of a person, even if he wasn't himself anymore, is sad. It's the point of no return, the ultimate last step. Which I think to some degree is, always, sad. That he died peacefully really is graceful.

One time I came to visit my dad in the care home, travelled home all the way from abroad. My dad was wandering outside in the garden and I was trying hard to remember the code of the gate to enter the facility. And then I heard it my dad calling my name. It’s was the greatest thing I heard. He hadn’t called me by name or recognised me in such manner for years. My siblings were jealous :)

That's wonderful! :)

Re: 'I am mine': Alzheimer's at 41 (2018)

#92

Post by lqet »

microtherion wrote: post #42
lqet wrote: post #10

Earlier quoted context omitted.

> 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 mak…

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…

> 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.

Re: 'I am mine': Alzheimer's at 41 (2018)

#93

Post by steve_adams_86 »

LocalH wrote: post #88
mrleiter wrote: post #84

Earlier quoted context omitted.

Yes, maybe, I understand completely. Still, the final loss of a person, even if he wasn't himself anymore, is sad. It's the point of no return, the ultimate last step. Which I think to some degree is, always, sad. That he died peacefully really is graceful.

My opinion is that death doesn't have to be sad. That's all a matter of perspective. It shouldn't necessarily be celebrated (death itself, not the person who died), but it does help to remember that often times, death means the end of suffering and pain.

I really like the stoic philosophy regarding death. It agrees with what you’re saying. One of the key reasons why the end of suffering is good (even if it’s sad) is that the suffering person can’t really function as a human being anymore. If you’re no longer able to fulfill your role and your days are unbalanced with suffering, it’s considered sensible and honourable to die peacefully and intentionally. You were nothing for an eternity, you did your best to be a good person, now you’ll go back to that quiet nothing. It was fine that you didn’t exist, you existed, and it’ll be fine that you don’t exist.

Obviously this tidy philosophy doesn’t mesh with things like murder or other untimely deaths. It just encapsulates nicely why sometimes death is a good thing. And why we shouldn’t fear it.

Re: 'I am mine': Alzheimer's at 41 (2018)

#94

Post by steve_adams_86 »

metamet wrote: post #61
mrleiter wrote: post #9

Jo sadly passed away shortly after this article was published. [1] RIP. [1] https://www.macleans.ca/news/canada/they-came-to-celebrate-j...

> 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 permit…

Thanks for sharing this. Your grandma sounds like she was loving and selfless. Putting aside her personal loss of varying degrees of agency and making sure you knew how important you were to her. Not all people are like that. I wish your family could have been with her.

Re: 'I am mine': Alzheimer's at 41 (2018)

#95

Post by steve_adams_86 »

morelisp wrote: post #74
hobby-coder-guy wrote: post #17

Earlier quoted context omitted.

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.…

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.

Re: 'I am mine': Alzheimer's at 41 (2018)

#96

Post by cosmiccatnap »

eastbayjake wrote: post #4

> 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 directiv…

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.

Re: 'I am mine': Alzheimer's at 41 (2018)

#97

Post by cosmiccatnap »

masterMiller_ wrote: post #34
sillysaurusx wrote: post #23

Earlier quoted context omitted.

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. We just don't know. And it's fine not to know. https://www.youtube.com/watch?v=42QuXLucH3Q

It’s pretty glib to just reduce the idea of intermittent fasting to “you don’t eat.” Intermittent fasting shouldn’t even be seen as some kind of innovation, since it’s essentially a return to how human beings have managed their metabolic processes for tens of thousands of years. It’s actually the idea of eating all day everyday that’s the innovation. We evolved to be hunter-gatherers; we had to chase down and kill an…

You lost us at glib

Re: 'I am mine': Alzheimer's at 41 (2018)

#98

Post by [deleted] »

criddell wrote: post #73
lqet wrote: post #10

Earlier quoted context omitted.

> 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 mak…

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 talke…

[deleted]

Re: 'I am mine': Alzheimer's at 41 (2018)

#99

Post by SpikeDad »

curryst wrote: post #72
sillysaurusx wrote: post #23

Earlier quoted context omitted.

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. We just don't know. And it's fine not to know. https://www.youtube.com/watch?v=42QuXLucH3Q

You're being downvoted without anyone responding, which seems unfair to me. I disagree with you, but your point is valid (if more certainly phrased than I would have gone with). You're right. As a species, we are wrong nearly all the time. For all the things we know, there are dozens of theories that were contemporaries or predecessors of the correct answer as we understand it now. You are entirely ignoring that our…

Except of course there is no deity which can assist us in this decision. That means our society has to have this difficult discussion and determine if or how we can gain the wisdom to change things. There is no question this is an issue where can change things but can we gain the courage to determine the outcome?

So far the answer is no considering how unavailable death with dignity resources are in most states. Ironically it's religion that is blocking the fruitful discussions.

Re: 'I am mine': Alzheimer's at 41 (2018)

#100

Post by fuzxi »

danbmil99 wrote: post #82
paulryanrogers wrote: post #81

Earlier quoted context omitted.

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/…

>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?

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