Dinner with Proust: how Alzheimer’s caregivers are pulled into patients’ worlds(theguardian.com)
theguardian.com
Dinner with Proust: how Alzheimer’s caregivers are pulled into patients’ worlds
https://www.theguardian.com/society/2023/feb/28/dinner-with-proust-how-alzheimers-caregivers-are-pulled-into-their-patients-worlds
13 comments
I was told that in the early stages of dementia, it's good to challenge their unrealistic beliefs, but in the later stages its best to go along with them.
Middle and late stage dementia patients are basically in a constant state of confusion. The human mind can't handle being confused all the time, so it will make up stories that make their world make sense. Once they're at that stage, it's kinder to just let them live in that world, rather than pulling them back into confusion.
When my mom used to take my grandfather with dementia out to lunch, he would always insist that he'd been to that restaurant before, even if he hadn't. It was his way of convincing himself something was familiar, limiting that perpetual confusion.
Middle and late stage dementia patients are basically in a constant state of confusion. The human mind can't handle being confused all the time, so it will make up stories that make their world make sense. Once they're at that stage, it's kinder to just let them live in that world, rather than pulling them back into confusion.
When my mom used to take my grandfather with dementia out to lunch, he would always insist that he'd been to that restaurant before, even if he hadn't. It was his way of convincing himself something was familiar, limiting that perpetual confusion.
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Yeah. It's a sad disease. Psychosis combined with emotional disregulation is not fun. Fighting against it doesn't work very well because the other person isn't seeing what you're seeing.
From my own experience, I explain psychosis as someone trying to tell me a cloudless sky is pink. I've known the sky is blue my entire life. Everyone knows the sky is blue. Who is this bizarre person who thinks otherwise?
On top of that, humans tend to double down when challenged. Fighting it just doesn't work. Their memory is gone, so any progress you've made is undone very quickly. If you don't understand what is happening, you're going to lose your mind too.
From my own experience, I explain psychosis as someone trying to tell me a cloudless sky is pink. I've known the sky is blue my entire life. Everyone knows the sky is blue. Who is this bizarre person who thinks otherwise?
On top of that, humans tend to double down when challenged. Fighting it just doesn't work. Their memory is gone, so any progress you've made is undone very quickly. If you don't understand what is happening, you're going to lose your mind too.
How beautiful and terrifying. Thank you for sharing your story.
Fortunately, the aforementioned DMT experience helped me process her end-of-life greatly. Even my father noticed a very quick and thorough change in my demeanor. I was also extremely fortunate to be able to experience the moment when she actually reached her peace. I was no longer worried about her, because I deeply felt that her transition into death was going to be happy and peaceful. I never really experienced any grief as a result of that.
> Aside from occasional comments about shopping and schedules, she barely spoke to him at all, keeping the warmest part of herself for her two-dimensional friends.
I'm thinking that has something to do with the fact that the photos don't want to cut her nails, give her a bath, change her clothes, or (most importantly) convince her of reality? Dementia sufferers live in a world of their own, and anything/anyone who tries to "set them straight" risks anger and rejection...
I'm thinking that has something to do with the fact that the photos don't want to cut her nails, give her a bath, change her clothes, or (most importantly) convince her of reality? Dementia sufferers live in a world of their own, and anything/anyone who tries to "set them straight" risks anger and rejection...
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This a great story about why not to get married.
Why, because there is some chance that your spouse gets dementia? If the alternative is to be alone for the rest of your life, I'd take that chance.
To that point, from the article:
> The danger of isolation is well established. It tampers with the immune system and may be as detrimental to bodily health as lack of exercise and high blood pressure. One well-known study suggests that loneliness is comparable to smoking 15 cigarettes a day. We also know that loneliness raises the odds of depression and anxiety. Less well known is its effect on cognitive health: loneliness shortens attention span and interferes with judgment and self-control, the very attributes required to deal with a patient’s fixations and delusions.
To that point, from the article:
> The danger of isolation is well established. It tampers with the immune system and may be as detrimental to bodily health as lack of exercise and high blood pressure. One well-known study suggests that loneliness is comparable to smoking 15 cigarettes a day. We also know that loneliness raises the odds of depression and anxiety. Less well known is its effect on cognitive health: loneliness shortens attention span and interferes with judgment and self-control, the very attributes required to deal with a patient’s fixations and delusions.
Are you kidding. I LOVE being alone. Guess what I am doing on Friday night. Can't figure it out? The answer is: whatever I want!
With some wife or girlfriend badgering me to spend time at home -- she decies what I do with my Friday night which friends i can see...No. I loose essential freedoms.
And then you are tied to that person your whole life.
Hardly seems like a winning deal.
With some wife or girlfriend badgering me to spend time at home -- she decies what I do with my Friday night which friends i can see...No. I loose essential freedoms.
And then you are tied to that person your whole life.
Hardly seems like a winning deal.
It’s a strange thing to assume that an entire, loosely defined type of relationship is bound to end up in tragedy or abuse. Keep an open heart !
I would say it's the opposite of loosely defined. Marriage is one of the most rigid and structured relationship contracts that exists.
Dating people on Tinder are loosely defined relationships.
Dating people on Tinder are loosely defined relationships.
My mother began suffering from dementia a few months before she passed. The biggest clue to the similarities was one time when she was telling me that she was seeing demons in the corner of the room. About a month prior, I'd had a pretty potent DMT experience that seems to have innately "taught" me a few things. Based on that, I told her to think about Jesus Christ (she was quite religious), I gave her about 30 seconds (which, I was presuming, felt like much longer to her). When I then asked her what she was seeing, she said "bright colors and flowers". Emotion having that high of an effect on what she saw was very much like how psychedelics tend to amplify your emotions and bring them to the vision system.
She also would talk about how she just got back from writing a novel or a movie. Before my DMT experience, I didn't have the knowledge to be able to lean into it, so I'd challenge it. Afterwards, I knew enough to lean into it. I'd ask her about her latest "work". I believe that in her mind, she was actually traveling to write books and movies.
If you have a loved one suffering from dementia, I almost want to suggest that you should take some time (if possible) and have a small psychedelic experience (or, if you want, dive into DMT). It may help you greatly understand and support your loved one. If you don't want to have such an experience yourself, at least lean into what they say their experiences are, never fight against them.