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As a health care worker at least let me assure you the ones who suffer from Alzheimer's in my honest opinion really have no self awareness of what they are goin

by 14 2y ago

As a health care worker at least let me assure you the ones who suffer from Alzheimer's in my honest opinion really have no self awareness of what they are going through. They are just in their own little world and slowly moving through life without much insight as to what they are doing. It is heartbreaking for the family and those who care, but for the individual it is not a painful existence.

pmarreck 2y ago
sounds an awful lot just like people on the spectrum (note: that includes me)
- taskforcegemini 2y ago
  imho everyone is on the spectrum, it's just a question of where (and possibly when)
nothrabannosir 2y ago
Thank you for your expert insight though I must confess--if this was meant to be reassuring it has the exact opposite effect... A disease that makes only your family suffer, wow. I thought cancer was bad.
- jader201 2y ago
  To be fair, death seems pretty much the same. That is, it's not the dead that are in pain, it's those left behind. So, while I agree with you, it doesn't seem much worse than death, especially if the family accept/believe that the Alzheimer's patient is actually not suffering. For example, if my dad lived long enough and ended up with it, had I been convinced that he actually wasn't suffering, it may be less heartbreaking as his son (but still heartbreaking for my personal loss of the relationship with my Dad, and him not knowing me). It's hard for me to say, having not had someone super close end up with it -- only more extended family. So those closer/more affected may have other thoughts.
  - moooo99 2y ago
    > So, while I agree with you, it doesn't seem much worse than death, especially if the family accept/believe that the Alzheimer's patient is actually not suffering. While I agree that it’s not much different than death, it seems painful to know that family suffers the loss of the same person essentially twice
    - jader201 2y ago
      > it seems painful to know that family suffers the loss of the same person essentially twice Speaking from second-hand experience -- that is, seeing my father experience the loss of his aunts/grandmother "twice". One of his aunts was like a mother to him (his mother passed when he was 2, his father when he was 21). I feel that he really only suffered the loss once: when she succumbed to Alzheimer's. The loss was mostly grieved then, and by the time she passed, he had already grieved. I'm not saying her death wasn't hard. But in a lot of ways, I feel like there was as much relief and peace, as there was suffering from her death. By the time of her death, she had been long gone anyway. Of course, everyone is different, and every loss/Alzheimer's diagnosis is different. But it seems like you can lose someone you love in a number of ways, and often multiple ways, before their ultimate passing. And each one of those partial losses seem to add up to ~a single loss of mourning/grief, rather than experiencing full grief for each one. Another example is simply having geographical distance from a loved one. Moving away (or them moving away from you) can result in experiencing (grieving/mourning) a loss. And then once they pass, you've already partially grieved, and the additional grieving is lessened from already having been distanced from them (vs. other loved ones that still live close, and grieve more from having them a part of their lives more frequently). Again, this is just from my experience/observations from seeing how those close to me have grieved. Others may feel differently.
IAmGraydon 2y ago
How would you know the difference between a lack of pain and a lack of ability to communicate it to you?
bagels 2y ago
The end stages are not great for the individual or the family.
- yxhuvud 2y ago
  Neither are the gradual decline before that. At least there can be time to prepare for the inevitable.
kworks 2y ago
I realize you likely mean your comment as a kindness and I appreciate that intent. However, as the son of a mother who slowly died from early onset dementia, I can attest that just because the ego self has fractured and scattered into a million pieces does not mean that the afflicted person is in some peaceful state of not knowing. That they are somehow not suffering or in pain. It is just that the afflicted can no longer articulate their suffering in ways understood by the rest of us in consensus reality. If one pays close attention, the reality of their suffering is bright and clear. One of many many examples was when my mother would compulsively pick up a pen and make rhythmic circles on and off for hours. I would watch her and wonder why. Turns out she had a severe (brutally painful) urinary tract infection and was trying to soothe her pain. She was a much beloved English teacher and writing was her refuge. She was doing her level best to alleviate her suffering. The thought that a person dying from Alzheimer's is not having a painful existence is radically disconnected from reality. I respectfully ask you and any caregivers for dementia patients to avoid conflating your own understanding of reality with the actual reality of your patients.
- wobfan 2y ago
  > The thought that a person dying from Alzheimer's is not having a painful existence is radically disconnected from reality. While I understand your point I think you're talking from a perspective of the other extreme, the one where there indeed was a lot of pain but the person couldn't communicate it. Still, Alzheimer's itself mainly works in your head and it's probably more likely to assume that in most cases caregivers will have at least some means to see if patients are suffering. The person you're replying to does probably have a lot of experience with sufferers, although, obviously, he also just states his anecdotal experience. > I respectfully ask you and any caregivers for dementia patients to avoid conflating your own understanding of reality with the actual reality of your patients. IMHO this would not help, but maybe even create a bigger gap between patients and caregivers. We are humans in the end, and the only thing we can do is to try our best to give them the best care and make the rest of their lives as good as possible. I think, what makes the difference, is being aware that any patient with Alzheimer's or some other kind of dementia could be in a position of not being able to communicate their pain in any way. But it doesn't help to generalize this, stopping to trust your feeling and assuming the worst. That said, I’m truly sorry for the loss you experienced, and I hope you and your family find some measure of peace. I know how it feels. I hope I don't sound too rude or harsh, it definitely wasn't meant in that way.
wobfan 2y ago
When I went through this with my grandmother, I experienced that too. Like others said, it's important to note that in the later stages it may be hard for the patients to communicate their pain, so we cannot be sure, but at least in my anecdotal experience I would say that I can be pretty sure there was no acute pain involved. The most important thing for me and others around her was to just vibe with her reality. Just give her the space. Not be mad, but laugh or help, again and again. Like you would do with a baby. Don't expect them to learn, don't expect anything. Until the very end I think she had a good life. The end, obviously, will have been hard for her, because that's a time where they cannot even live their own little life anymore but probably experience higher pain in general, but that's what it is.
yxhuvud 2y ago
They have plenty of time to suffer between diagnosis and not being able to be aware of the world at all though. Dad had years of depression due to the gradual decline before being incapable of communicating.
scruple 2y ago
My grandfather had Alzheimer's. My grandmother dementia. My grandfather would, not uncommonly, escape from his care home. He'd be found, miles away, trying to "walk back home" -- and, despite his deterioration, he knew the routes, he was walking the right city streets to get to the right country roads, etc... He wanted to "get home" and make sure his garden was being tended to. Sometimes he'd have shit himself, or pissed himself, but had been walking for hours regardless. That isn't a painless existence. Through what I know of his experience alone, I've understood this to be deeply traumatic. And my grandmothers experience was something else entirely. I believe I've commented on it here before, but her experience was also uniquely horrific. Bed-ridden, gangrene, do-not-resuscitate orders that were not acknowledged... I am terrified of what they went through. Personally, I feel that our notions of "pain" don't really get even approximately close to what these patients endure.
InDubioProRubio 2y ago
They have repeatet panic attacks, when they "wake up" in a foreign place, surrounded by foreign people. Think of "teleported to a strange city" every 3 minutes.
circlefavshape 2y ago
Maybe you only get to see the sufferers when their condition is already advanced? My Dad is in the early stages of Alzheimer's, and knows it, and is really down about it. He regularly goes off by himself to cry. It's pretty heartbreaking
Zababa 2y ago
That hasn't been my experience (n=1 thankfully, I hope it never increases involuntary). Lots of confusion, distress, trying to go outside/go back to where they lived when they were children, not recognizing the people around them ("he can't be my husband, my husband is young!").

by 14 2y ago

pmarreck 2y ago

sounds an awful lot just like people on the spectrum (note: that includes me)

taskforcegemini 2y ago
imho everyone is on the spectrum, it's just a question of where (and possibly when)

nothrabannosir 2y ago

Thank you for your expert insight though I must confess--if this was meant to be reassuring it has the exact opposite effect... A disease that makes only your family suffer, wow. I thought cancer was bad.

jader201 2y ago
To be fair, death seems pretty much the same. That is, it's not the dead that are in pain, it's those left behind. So, while I agree with you, it doesn't seem much worse than death, especially if the family accept/believe that the Alzheimer's patient is actually not suffering. For example, if my dad lived long enough and ended up with it, had I been convinced that he actually wasn't suffering, it may be less heartbreaking as his son (but still heartbreaking for my personal loss of the relationship with my Dad, and him not knowing me). It's hard for me to say, having not had someone super close end up with it -- only more extended family. So those closer/more affected may have other thoughts.
- moooo99 2y ago
  > So, while I agree with you, it doesn't seem much worse than death, especially if the family accept/believe that the Alzheimer's patient is actually not suffering. While I agree that it’s not much different than death, it seems painful to know that family suffers the loss of the same person essentially twice
  - jader201 2y ago
    > it seems painful to know that family suffers the loss of the same person essentially twice Speaking from second-hand experience -- that is, seeing my father experience the loss of his aunts/grandmother "twice". One of his aunts was like a mother to him (his mother passed when he was 2, his father when he was 21). I feel that he really only suffered the loss once: when she succumbed to Alzheimer's. The loss was mostly grieved then, and by the time she passed, he had already grieved. I'm not saying her death wasn't hard. But in a lot of ways, I feel like there was as much relief and peace, as there was suffering from her death. By the time of her death, she had been long gone anyway. Of course, everyone is different, and every loss/Alzheimer's diagnosis is different. But it seems like you can lose someone you love in a number of ways, and often multiple ways, before their ultimate passing. And each one of those partial losses seem to add up to ~a single loss of mourning/grief, rather than experiencing full grief for each one. Another example is simply having geographical distance from a loved one. Moving away (or them moving away from you) can result in experiencing (grieving/mourning) a loss. And then once they pass, you've already partially grieved, and the additional grieving is lessened from already having been distanced from them (vs. other loved ones that still live close, and grieve more from having them a part of their lives more frequently). Again, this is just from my experience/observations from seeing how those close to me have grieved. Others may feel differently.

IAmGraydon 2y ago

How would you know the difference between a lack of pain and a lack of ability to communicate it to you?

bagels 2y ago

The end stages are not great for the individual or the family.

yxhuvud 2y ago
Neither are the gradual decline before that. At least there can be time to prepare for the inevitable.

kworks 2y ago

I realize you likely mean your comment as a kindness and I appreciate that intent. However, as the son of a mother who slowly died from early onset dementia, I can attest that just because the ego self has fractured and scattered into a million pieces does not mean that the afflicted person is in some peaceful state of not knowing. That they are somehow not suffering or in pain. It is just that the afflicted can no longer articulate their suffering in ways understood by the rest of us in consensus reality. If one pays close attention, the reality of their suffering is bright and clear. One of many many examples was when my mother would compulsively pick up a pen and make rhythmic circles on and off for hours. I would watch her and wonder why. Turns out she had a severe (brutally painful) urinary tract infection and was trying to soothe her pain. She was a much beloved English teacher and writing was her refuge. She was doing her level best to alleviate her suffering. The thought that a person dying from Alzheimer's is not having a painful existence is radically disconnected from reality. I respectfully ask you and any caregivers for dementia patients to avoid conflating your own understanding of reality with the actual reality of your patients.

wobfan 2y ago
> The thought that a person dying from Alzheimer's is not having a painful existence is radically disconnected from reality. While I understand your point I think you're talking from a perspective of the other extreme, the one where there indeed was a lot of pain but the person couldn't communicate it. Still, Alzheimer's itself mainly works in your head and it's probably more likely to assume that in most cases caregivers will have at least some means to see if patients are suffering. The person you're replying to does probably have a lot of experience with sufferers, although, obviously, he also just states his anecdotal experience. > I respectfully ask you and any caregivers for dementia patients to avoid conflating your own understanding of reality with the actual reality of your patients. IMHO this would not help, but maybe even create a bigger gap between patients and caregivers. We are humans in the end, and the only thing we can do is to try our best to give them the best care and make the rest of their lives as good as possible. I think, what makes the difference, is being aware that any patient with Alzheimer's or some other kind of dementia could be in a position of not being able to communicate their pain in any way. But it doesn't help to generalize this, stopping to trust your feeling and assuming the worst. That said, I’m truly sorry for the loss you experienced, and I hope you and your family find some measure of peace. I know how it feels. I hope I don't sound too rude or harsh, it definitely wasn't meant in that way.

wobfan 2y ago

When I went through this with my grandmother, I experienced that too. Like others said, it's important to note that in the later stages it may be hard for the patients to communicate their pain, so we cannot be sure, but at least in my anecdotal experience I would say that I can be pretty sure there was no acute pain involved. The most important thing for me and others around her was to just vibe with her reality. Just give her the space. Not be mad, but laugh or help, again and again. Like you would do with a baby. Don't expect them to learn, don't expect anything. Until the very end I think she had a good life. The end, obviously, will have been hard for her, because that's a time where they cannot even live their own little life anymore but probably experience higher pain in general, but that's what it is.

yxhuvud 2y ago

They have plenty of time to suffer between diagnosis and not being able to be aware of the world at all though. Dad had years of depression due to the gradual decline before being incapable of communicating.

scruple 2y ago

My grandfather had Alzheimer's. My grandmother dementia. My grandfather would, not uncommonly, escape from his care home. He'd be found, miles away, trying to "walk back home" -- and, despite his deterioration, he knew the routes, he was walking the right city streets to get to the right country roads, etc... He wanted to "get home" and make sure his garden was being tended to. Sometimes he'd have shit himself, or pissed himself, but had been walking for hours regardless. That isn't a painless existence. Through what I know of his experience alone, I've understood this to be deeply traumatic. And my grandmothers experience was something else entirely. I believe I've commented on it here before, but her experience was also uniquely horrific. Bed-ridden, gangrene, do-not-resuscitate orders that were not acknowledged... I am terrified of what they went through. Personally, I feel that our notions of "pain" don't really get even approximately close to what these patients endure.

InDubioProRubio 2y ago

They have repeatet panic attacks, when they "wake up" in a foreign place, surrounded by foreign people. Think of "teleported to a strange city" every 3 minutes.

circlefavshape 2y ago

Maybe you only get to see the sufferers when their condition is already advanced? My Dad is in the early stages of Alzheimer's, and knows it, and is really down about it. He regularly goes off by himself to cry. It's pretty heartbreaking

Zababa 2y ago

That hasn't been my experience (n=1 thankfully, I hope it never increases involuntary). Lots of confusion, distress, trying to go outside/go back to where they lived when they were children, not recognizing the people around them ("he can't be my husband, my husband is young!").