
How Much a Dementia Patient Needs to Know - anuragsoni
https://www.newyorker.com/magazine/2019/03/04/how-much-a-dementia-patient-needs-to-know
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brianberns
Read all the way to the end thinking that it was remarkably well written, like
an Oliver Sacks essay. And then I read the byline... Sacks was a treasure.
What a gifted man.

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black-tea
It worries me to think that people would lie to me about my condition and I
might not actually understand what's going on. I would like to die before this
stage, but if somehow I reached this stage first they'd keep me alive and I'd
no longer be able to kill myself.

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jquinby
Related: entire self-contained 'villages' for dementia patients:
[https://gizmodo.com/inside-an-amazing-village-designed-
just-...](https://gizmodo.com/inside-an-amazing-village-designed-just-for-
people-with-1526062373)

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Deimorz
This is another good (and very long) article from The New Yorker on the topic,
from last October: [https://www.newyorker.com/magazine/2018/10/08/the-
comforting...](https://www.newyorker.com/magazine/2018/10/08/the-comforting-
fictions-of-dementia-care)

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jeffrallen
Humans are complex, and being humane is too. But it's worth a try!

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sigi45
Sometimes he calls out, “I want to die. . . . Let me die.”

I personally will try to end it.

The stigma and no real options makes it more difficult than it needs to be.

Having control over your life should not stop when it is about your dead.

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simonsays2
Do not be too quick to believe diagnosis of dementia. Doctors will diagnose it
while patients are on medication like opiods. Then incompetence can be
declared and the looting begun.

There is evil afoot you would not believe.

Dont argue. I am merely informing you, not convincing you.

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cmiles74
Is it surprising that people are happier and better able to deal with their
illness when they believe they are doing meaningful work and are useful to the
people that surround them?

~~~
kartan
> Is it surprising that people are happier and better able to deal with their
> illness when they believe they are doing meaningful work and are useful to
> the people that surround them?

This is one of the many reasons that thinking that "poor people" are just
lazy. To feel useful is a very basic human need. To the extend that even very
rich people that does not need to work still does it.

> The sisters who ran the home, though perceiving his confusion and delusion,
> respected and even reinforced the identity of this somewhat demented
> resident, who, they felt, might fall apart if it were taken away.

Maybe a definition of sanity is the ability to deal with the lack of purpose.
Most people is going to feel stressed and try to find a way to be useful
again. Only when you are sick - whenever is dementia or depression - you stop
being able to find your place in the world by yourself.

~~~
mirimir
For dementia, "deal with their illness" is the obvious way to frame it. But,
on the other hand, many with physical limitations don't like being labeled as
"disabled".

Given how our minds work, self-reinforcement is a major factor. Negative
commentary (and self-commentary) is hugely disempowering. I suspect that, in
many cases, dementia is iatrogenic. In a way, it's like bullying someone in
order to keep them irrational, defensive, and self-defeating.

And yes, "lack of purpose" is a huge issue. Or rather, lack of a future worth
living into. That's also a huge part of dementia.

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mirimir
Damn. I can barely read TFA. I mean, we'll all eventually face some sort of
dementia. And death, of course. But when you're 70, it's much more immediate.

There were times in my life when I didn't do much except drift, play with
drugs, seek sex, put my life at risk, etc, etc. All the serious stuff could
wait. And WTF, there'd be global nuclear war any day now. So why bother?

Now I'm retired. There's no need to work, so all I do is putter. And my likely
future is so short that there's no point in long-term planning. Also, and it's
quite amusing, I don't need drugs to space out. I need them to stay focused.
And to keep various physiological stuff from killing me.

So maybe I'm a lot like that patient in TFA. But there's a key difference:
I've never been diagnosed and institutionalized. And dog willing, I'll die
before I am.

~~~
gubbrora
> And my likely future is so short that there's no point in long-term
> planning.

I've enjoyed your hn posts so thank you for that. I hope you can make the most
of the time you have left.

~~~
mirimir
Hey :)

By "short", I mean (dog willing) 10-20 years. So there plenty of time for
y'all to get very tired of me.

I have noticed, over the last decade or so, that I'm becoming increasingly
adamant about doing whatever it is I'm committed to in the moment. And not
spending time doing stuff that doesn't interest me, to make others happy. I've
always been somewhat like that. But now I'm much more upfront about it.

~~~
BigChiefSmokem
This reminds me of the famous Dylan quote that Steve Jobs used to describe his
time left with Bill Gates: "You and I have memories longer than the road that
stretches out ahead."

~~~
mwcremer
Beatles, "Two of Us", _Let It Be_

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WalterBright
Dementia patients will forget that many of their loved ones are dead, and will
ask to visit them, or why they don't come to visit. Reminding them that
they're dead is a terrible thing, as I found out the hard way. Just say
they're out of town for the time being. They've lost their ability to cope
with reality, it's best to just go with the flow instead of upsetting them.

~~~
mirimir
I don't think that lying to people is a good strategy.

I mean, if I'd forgotten that my whatever was dead, I'd like to be reminded.
Not humored. Because that's so dehumanizing.

And if I'm so far gone that I can't handle it, I'll probably forget about it
all, fairly quickly.

Or if you can't deal with the upset, just distract them.

~~~
DanBC
You say you'd forget, but that's the point. You forget you've asked, you
forget the person is dead, you ask about them, you're told they're dead,
you're shocked and you start grieving for them, and now you're in a loop of
continuously asking about the person, and being told they're dead, and grief.

Keeping someone trapped in this grief-loop is cruel. It's far better to just
lie.

~~~
peterlk
I had a grandfather dementia. Whenever we had to leave from visiting him, he
would remark that we "just got here!". His short term memory was less than 5
minutes, so he would start the "but you just got here" bit by the time we had
finished saying goodbye and were headed toward the car. This loop would happen
several times with sincere emotion in his face, until we would just say
something like, "we'll be right back" and just leave.

~~~
mirimir
Was he perhaps in a nursing home? If so, maybe he was just terrified of being
left alone.

Many years ago, I turned a girlfriend on to LSD. She loved it, and wanted more
the next day. I told her that she ought to wait a few days, for the tolerance
to fade. But she was adamant.

So we did maybe 2-3 doses, and she was still unsatisfied with the peak. And --
dumbass that I was -- I suggested that we smoke some marijuana.

That was a serious mistake. Because our short-term memory dropped to 30
seconds or so. I was cool with that, staring at the patterns in everything.
But she was not. So I spent perhaps 3-4 hours reminding her that she was just
wasted on acid and dope, and that she'd be fine tomorrow.

And she was. Except that she was no longer my girlfriend.

But whatever. Maybe you could have just reminded your grandfather that his
short-term memory was hosed. And then assured him that you'd be back next
week.

~~~
scott_s
Part of the dementia is that you lose the metacognition to understand that
your short-term memory is hosed. We don't just become forgetful. We lose
cognitive capacity. We're not ourselves minus the ability to remember things.
We slowly become a different person.

~~~
mirimir
Maybe so. I guess that I'll find out.

~~~
scott_s
My point is that you will not.

~~~
mirimir
Well, I already know that my short-term memory is somewhat hosed. So for stuff
that matters to me, I leave myself notes. And for stuff that doesn't matter to
me, I just forget. And that's actually better, in a way, because I'm more
focused. And less distracted by guilt or whatever.

