Seeing famous actors e.g. Robin Williams, and Bruce Willis suffering from dementia made me wonder in later stages do the people still aware of death? We all know death because we know the process we learn from or it’s just that we instinctively aware of it?
I’m sure it varies from person to person and disease to disease.
About three years ago my brother died of brain cancer and I was there helping him through the whole process of decline and death. He was definitely aware he was dying earlier on, of course, when the tumor’s effects were mild. But in his final days he just kind of shut down bit by bit. He seemed to be unaware of some of the degradation that was happening to his mind - he would lose specific words, for example, substituting random words in their place, but he was unaware this was happening even when we told him about it. One of the surgeries ended up taking out a quarter of his visual field but we only knew that because they explicitly checked - he didn’t seem to be aware that he couldn’t see stuff in that quadrant any more. So I suppose in his case the progression was fairly “merciful.”
If you’re dealing with a specific situation here, I’d recommend asking one of the doctors involved. I’m sure they’ll have some knowledge more specific to it.
I’m sorry for your loss and don’t want to take away from that significance, but I’d like to share some info. Just for general info so people can know what they’re seeing. Vision loss isn’t necessarily obvious to a fully-alert person. It’s not a black void in your vision, it’s a lack of image. A lack of image means a lack of signal, so your brain doesn’t see nothing, it processes nothing. You may be able to recognize a lack of vision if you know something is supposed to be there, but your brain will try to stitch together the information available. Point in case: both of your eyes have a blind spot a little up and a little outward from the center. It’s not just covered by your other eye because you still don’t see it when you close one eye. You can search it for a picture that partially disappears when getting closer.
I get occular migraines that involve distortion followed by central blindness in one eye. The “faces” I see are incredibly unnerving during those episodes. Last time, basically a 2" diagonal slice was removed from peoples faces at conversation distance from forehead to ear. Not a black spot, just gone with the remaining image stitched back together.
Indeed, the brain is very good at “filling in” holes in its senses. But in this case even after it was pointed out to him that he was missing part of his vision he didn’t seem to be capable of acknowledging or adapting to it, so it was a bit more than it just not being obvious. He seemed to be unable to comprehend that losing that part of his vision was something that was even possible. I suppose his brain was “filling in” more than just the hole in the vision itself. Since the damage was to the visual center of his brain rather than the eyes themselves this seemed like an understandable manifestation.
“Fortunately” by the time that happened he’d already become unable to walk on his own, so he didn’t end up crashing into stuff or otherwise having accidents. We just had to make sure to put the things that we brought to him over to his right side, where he could see them and interact with them more easily.
I’m sorry, friend. I could have worded my comment better for you to explain I just wanted to do a PSA. I lost one grandparent to alzheimers and another to dimentia. I can’t imagine what you went through, but I can understand what it’s like to watch someone lose themselves. I know what you mean by certain circumstances being fortunate by time they emerge. The alzheimers grandparent lost communication skills and seemed trapped in his body but the dimentia grandparent seemed aloof to her conditions. There was morbid comfort among us seeing her fade.
I hope you found comfort and peace somewhere along the way.
Thanks, don’t worry about the wording. I have enough distance from it at this point that I can discuss it in a largely clinical manner. I’m just hoping that the info has proven useful to others.
So these examples are actually difficult to extrapolate from for the OP’s question as these happen to be examples of some of the specific brain changes that people don’t notice.
Was just chatting with a neurologist on this.
The brain sort of accommodates for the area based vision loss. They’d mentioned an example where someone who had effectively lost half their visual field in this way would draw a clock that was round on one side but went straight up the middle instead of extending to the other side, and it looked ‘right’ to them when double checking it.
As well, the one area of language that can get messed up without them noticing is the one responsible for understanding word meanings, as it kind of ends up as a deficit in both what they say and how they hear it. They’ll just chatter on with what everyone else can recognize as nonsense words but they have no idea.
Whereas the other area that’s related to the ability to form words when speaking they very much notice. They can only speak really slowly, but they know they are speaking very slowly and get very frustrated.
So the deficits your brother had were luckily the ones that didn’t end up being very noticable and frustrating for him, but that was possibly more a mechanism of those specific deficits.
Yeah, I knew he was probably “lucky” with the particular ways in which his brain was being destroyed by the cancer - he was obviously falling apart from my perspective as an outside observer, but from his perspective he wasn’t really noticing most of the stuff that was going wrong. He knew something was amiss, of course, but the only thing that really seemed to be bothering him was his inability to use his left arm correctly (another area of his brain that was failing due to the combination of surgeries and tumor and radiotherapy). He was very fastidious about doing physiotherapy exercises for it, which gave him a sense of “fighting back” I guess. He didn’t seem to comprehend the futility of it and we certainly weren’t going to try explaining it to him.
In the end, I’m satisfied that I was able to ensure that his final months went by in comfortable and familiar surroundings, with his family members around him providing security. He seemed to recognize us right up to the last days. There are a lot of worse ways to go.
I lost my father to Glioblastoma. 🫂
Very sorry to hear that. It’s a fast and certain variety, not easy to treat yet. Here’s hoping we’ll find its weak spot someday soon.
Sorry for your loss, thanks sharing some insightful information. As for I’m dealing with something similar, none it’s all good just got curious that’s all.
It’s okay, it’s been a few years and I’m good at being able to treat these things dispassionately. I’m glad to hear that you’re just curious, I’m happy to offer what insights I can to help people going through something like this but I’m even happier knowing that people aren’t actually going through it. :)
Analyses of focus-group discussions at four nursing homes showed that dying was silent and silenced, emotions were put into the background and death was talked about after a person’s death. The staff did not talk about death neither with each other nor with the residents (100). This seems unfortunate as several residents have revealed that they were aware of the fact that they soon would die. One person emphasized that she was waiting to go to her real heavenly home. Another resident said that she was only living at the ward temporarily until she would meet her deceased spouse again and another one said that she wanted to listen to gospels while dying. Some did not speak about death and dying but reasoned about their funeral (60). At the last stages of life persons with advanced dementia often experience eating difficulties, especially swallowing problems (84–85). Several qualitative studies have reported that persons with advanced dementia at the end of life often exhibit aversive refuse-like eating behavior (101). There have been discussions about whether tube-feeding or comfort feeding should be used (102–103). The American Geriatrics Society (96) has recommended comfort feeding.
So apparently yes, even in the later stages there’s still awareness and in the latest stage the refusal to eat may be tied to an awareness of its relationship to death and the choice shouldn’t be taken away from them.
(Though really, starving to death sounds pretty terrible and like there might be better options for a more evolved society.)
like there might be better options for a more evolved society.)
Like letting people go out on their own accord through a right to death. I hope that becomes a thing by the time I’m old, I don’t want to just waste away and be a burden on my family
Though really, starving to death sounds pretty terrible
Believe it or not, at that age it isn’t a terrible way. Stomach will not hurt after too long, since your body will stop producing acid and shunt blood away from your digestive system and once you really start getting into muscle catabolism you’re already frail enough that it’ll kill your heart fast.
Dementia isn’t stupidity.
Dementia is (among other symptoms) a loss of memory. The loss starts with the latest, newest memories, and proceeds to the older memories.
No doubt in my mind I’d kill myself.
That gets rid of all the memories.
Everyone says this. No one does this.
When we’re at the hospital getting our diagnoses, let’s make sure we document how we will talk ourselves into tolerating that bullshit and how we decide to die on nature’s terms instead of our own.
Robin Williams did. I’m sure other people do as well.
Is memory the same as knowledge or this two can be different? In terms of my question, Is the concept of death a knowledge or a human instinct?
No. This is besides the question. It has no relation to dementia.
It’s hard to say because by the time you’re in what would generally be considered late stage, you really aren’t able to communicate effectively.
What I can say is that what communication I have had with people that far gone did not entail anything about death. They weren’t doing their screaming or babbling or general word salad about death in any perceptible way. Overall, I’d say half of the patients I took care of were patients because of some kind of dementia, and I was very often there at the very end of their process.
I never had any patient close to the end that had a form of dementia as their primary diagnosis bring up death at all. Meaning, no Alzheimer’s type out dementia. Now, patients that exhibited dementia-like symptoms as a result of some other condition (usually brain tumors) did, in a small handful of instances say and do things that made it seem like death was on their mind.
Out of those, there’s only two where I feel confident that what they were saying was about their perception that they were dying, rather than it being more likely that it was a product of the same kind of random things that weren’t a sure sign that they were aware of their dying, if that makes sense.
Someone just saying disjointed strings of things that happen to include the words death or dying, it’s impossible to be sure what they were thinking or feeling. Because it could be jumbled in with completely unrelated things.
But yeah, those two in specific, I’m fairly sure that they were at least partially aware of the fact that they were near death. Both of them said that they wanted to die, at some point in the process, though they didn’t always say that. One of them said they weren’t ready, or that they didn’t want to go yet.
I don’t know, and there’s no way to know for sure, what they were thinking, if it was conscious thought, or even if it was actually them rather than just misfiring brains parroting things they’d heard in the past. But I “felt” like it was them, whatever kernel of their mind was left.
Very insightful thanks!
I think yes, but how they experience it may be different from how they would have if they didn’t have dementia. It also varies person to person, and time to time.
This elderly lady I know, she would talk about experiences from decades ago as if it was recent. But from time to time she’d also talk about missing the people in those stories knowing that they passed away.
It must be hard for them too trying to work through it all
Yes at a certain point I think that vivid memories are more powerfully connected to our brains than new sensory input is. As my grandfather declined he would look across the room at someone and think they were someone out of his past. And I don’t mean strangers walking past. He once thought his son-in-law, known for 40 years, was an old coworker.
When a person is truly late stage dementia they’re barely more than a vegetable.
yeah it is the worst. I so hope assisted suicide becomes an option if I ever get there. Honestly I would like to have a list to determine when its to happen. Can’t walk plus can’t eat solid food while having alzheimers. Worst thing about the disease is when it gets bad enough you are no longer competent to make the call.
It already is an option in certain states in the US and I think parts of Europe.
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Depending on the damage done to the brain, it could be a full-on recognition of impending death or just a primal, lizard brain fear that something is wrong and getting worse. I think Robin Williams was in the first category, and he was so fearful of the future that he took his own life and prevented himself from reaching stage two.
Late stage dementia can’t even feed themselves, so no.
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You can help someone learn in a much nicer way than by making fun of their mistakes.
I suspect you don’t aware.
I’m having a strange moment on Lemmy right now. Just like you, I was bothered that the title of this post was grammatically weird so I made a comment similar to the one you made, but yesterday I noticed my comment was getting some downvotes so I deleted it.
Then I woke up this morning to find this in my inbox and I thought, “oh great what did I do now?” so I went to click on it and my comment is gone Because I’ve already deleted it,
so how did this person respond to my comment that I deleted?
I’m wondering, can everyone still see that comment I deleted but me?
I vaguely remember it, it was something like “do you are like cheese?”
can everyone still see that comment I made yesterday even after I deleted it?
I think it’s a quirk of federation; the comment may have propagated to other instances and been replied to by other users on that instance before the deletion propagated.
One way to circumvent this issue is to not delete your comments just because they get a few downvotes. You’re not getting paid for Lemmy Karma.
It’s all good, not really good with english grammar in general. I hope you got a good chuckle with my used of are in such a weird way. 😅
