I lost my father to Glioblastoma. 🫂
Comment on Do people who are in late stage dementia still aware of the concept of death?
FaceDeer@kbin.social 6 months ago
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.
Eeyore_Syndrome@sh.itjust.works 6 months ago
FaceDeer@kbin.social 6 months ago
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.
kromem@lemmy.world 6 months ago
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.
OP’s question is a fairly different process, but I’d be inclined to agree that in the severe cases there’s not much concept of death. But in part, that’s because in severe dementia cases there may not be much of a consistent concept of self to consider as ending in the first place. It’s quite degenerative by the very end, and the body still being active and reactive outwardly doesn’t necessarily mean a subjective and continuous consciousness with an accumulated sense of self is still inside the way we experience it when healthy.
Degenerative brain disorders that attack cognition are scary as shit and I kind of wish more people realized this better as we might have much better laws regarding dignity and frequency in organizing end of life if it were so.
FaceDeer@kbin.social 6 months ago
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.
wabafee@lemmy.world 6 months ago
Sorry for your loss, glad you shared some insightful information. As for I’m dealing with something similar, none it’s all good just got curious that’s all.
FaceDeer@kbin.social 6 months ago
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. :)
XeroxCool@lemmy.world 6 months ago
I’m sorry for your loss and don’t want to take away from that significance, but I’d like to share some info. 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.
FaceDeer@kbin.social 6 months ago
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.
XeroxCool@lemmy.world 6 months ago
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.
FaceDeer@kbin.social 6 months ago
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.