How Much a Dementia Patient Needs to Know
newyorker.com
newyorker.com
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.
Go learn how to make a good Sauterne, in the mold (as it were) of Chateau d'Yquem. People may drink it a couple of centuries from now and thank you for it.
About 20 years ago, I was treated to a glass of the 1847 d'Yquem. It was superlative. As I drank it, I thought of the people who made it before our Civil War, and how cool it was to be drinking their work 15 decades after they put it down for a long snooze.
It wouldn't be long-term planning, exactly. More like long-term contribution, bringing joy to somebody you'll never know.
In any case, best wishes for a good life in whatever time remains before dog comes to fetch.
I've enjoyed your hn posts so thank you for that. I hope you can make the most of the time you have left.
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.
And more so, that you get less resistance about it.
Also, it strikes me that startup founders are probably a lot like that. Or more generally, entrepreneurs.
[0] I round up.
That's intentional humor. But I've forgotten the source :(
And actually, I don't like dogs at all. They're too hierarchical.
By "surprising," I mean that it does not contradict my model of how people behave. But by "obvious," I mean that, unprompted, I may not have considered it an important part of treatment.
My meta comment: don't dismiss something as "not surprising," and by proxy, not insightful or interesting if you had not already considered it.
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.
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.
I found it fascinating to read that sentence when I read from the article that routine is critically important. The article didn't seem to say that usefulness or value were what mattered or necessarily considered rather that things were familiar.
More broadly I think that the belief you mention is primarily from the protestant work ethic [1 & 2]. Absent that social norm I'd argue that needing to feel useful and the associated need to work is not part of the fabric of humanity. Feeling needed and feeling that work is a reward is one path to happiness or pleasure but it is not the only one.
I think a case can be made of not wanting to be a burden on a loved one but, sadly & cruelly, at some point dementia robs you of even that worry.
[1]: https://psmag.com/economics/protestant-worth-ethic-real-6554... [2 linked from 1 & more succinct summary]: https://hbr.org/daily-stat/2013/08/there-really-is-such-a-th...
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.
Keeping someone trapped in this grief-loop is cruel. It's far better to just lie.
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.
>And if I'm so far gone that I can't handle it, I'll probably forget about it all, fairly quickly.
Some people with dementia are absolutely convinced they're still in their mid-thirties. They think that their middle-aged children are still toddlers. They don't know why they're trapped in this strange place full of strange people, they just want to go home to their wife and kids, they want to go to work, they want to go for a beer with their buddies.
Imagine waking up tomorrow to discover that you're 40 years in the future, you're locked in a care home, your wife is dead, your friends are dead and your children are strangers. You look in the mirror and don't see your own face, but a stranger with wrinkled skin and missing teeth. Imagine that shock, that grief, that horror, repeated every single day for the rest of your life. Why am I here? What have they done to me? Why won't they let me see my wife? Why am I here? What have they done to me? Why won't they let me see my wife? No change, no progress, no learning, no acceptance, just an endless Groundhog Day of fear, confusion and grief.
I have a fairly dark imagination, but I cannot imagine a worse torture - to experience the worst day of your life, forever. Lying is the only humane thing we can do. Give Mr Q. a mop and a bunch of keys, tell him that his long-dead wife has just gone to visit her parents, let him believe something, anything better than the nightmare he is trapped in.
But mostly I laugh about it. Or listen to Turbonegro's "All My Friends Are Dead" or "Hell Toupee".
I get that I'm atypical. ADHD and bipolar, or whatever. And/or maybe too much acid, back in the day.
And maybe that will change when I truly hit dementia.
That's what I thought, too. But it causes severe, and pointless, suffering, which is cruel.
There is evil afoot you would not believe.
Dont argue. I am merely informing you, not convincing you.
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.