3 ms·

> It's far from "living with dignity", even if the body is still physically capable. It would be abhorrent if you understood what was going on, but if you did

> It's far from "living with dignity", even if the body is still physically capable. It would be abhorrent if you understood what was going on, but if you did you wouldn't be in that state. I'm not sure whether in general terms Dementia is as traumatic for the sufferer as the observer who attaches value to a historical person (who for all intents and purposes is gone)

vidarh 3y ago
There's often a long overlap, though. Both my grandmothers died with Alzheimers. We'lll never know how long they knew, but in retrospect it's clear they knew of the decline for quite some time. My mothers mother avoided hospital until it became too apparent to everyone around here that my grandfather tricker her. She'd make jokes about her failing memory for years, and while some of it might have been genuine, in retrospect odds are she noticed it was getting bad and was obscuring it with humour. For years afterwards, she would forget conversations partway through them, but clearly be aware that something was wrong. E.g. for some time she recognised me, but would wonder when I got there and how long I'd been there, and occasionally my name and who I was would slip, but she was otherwise lucid enough to understand that this was not normal. My dads mother managed to hide the decline until one day my grandfather was going in to hospital for a minor operation, and she refused to get out of bed. The last time I saw her before that, she seemed lucid and held a conversation. I never had another conversation with her, though she lived another decade - she went non-verbal almost overnight, but it was clear this wasn't some sudden physical change; she'd held it together until then, and gave up. It might be her cognitive decline was faster, and less cruel, but we really don't know if it was, or if she just managed to conceal it until the very brink. How much after that she managed to hold on to enough to recognise any of us - including her husband we don't know, because shortly after she went non-verbal she mostly stopped moving. But one of the cruelest parts of Alzheimers is what it does for those left behind - my grandfather spent a whole decade in his 70's and 80's walking to the nursing home, sitting with her all day, every day, then walking home, after she was for all intents and purposes gone.
- ghufran_syed 3y ago
  People with severe alzheimers have a major problem with short-term memory. So if they are in an environment where everything is the same as it has been for a long time, then can manage a long time, because their long-term memory is fine. But when something changes (like your grandfather going into hospital), it can often completely destabilize them and they often don't seem to get back to their prior level of functioning. I'm sorry your family had to go through that.
squigz 3y ago
Out of curiosity, have you seen dementia first-hand, or are you just making academic assumptions?
- pc86 3y ago
  Having first-hand experience from a care perspective doesn't give anyone any more insight into what's going on from a biological or mental standpoint.
  - lanstin 3y ago
    I don't think that could possibly be true unless you are yourself very limited in your cognitive capacity. Spending many hours with someone as their cognition is eroded by disease process, how can you help learning about the disease and the consequences? It would be like raising children and ending up not understanding more about developmental psychology. Not saying it will purge your thoughts of all mistakes, but you will learn a lot. Even simple things like the end of the day is a low point of cognition for dementia patients. The cycle between forgetfulness and poor nutrition. How the rhythms of conversation can last longer than the content of the conversations. How music can be a comfort when no words matter. How one can forgot one's children yet still have the ability to see if they are hiding upset feelings. The strange mosaic of skills and abilities that make up our full humanity.
criddell 3y ago
My dad died with Lewy Body Dementia and it was absolutely terrible. He was hallucinating terrible things and would be up all night terrified. I called him once when he was in the hospital and had to be restrained. He begged me to come get him because he thought he had been kidnapped and was being held in a barn somewhere. There was no convincing him that the people around him were doctors and nurses who were trying to help him. After I told him I couldn't come (I was in another country at the time) he begged me to call the police. By the end of the call he told me the barn was on fire and he was going to burn alive. It was enough to convince me that I needed to be in control of when and how I die. My dad had no idea what was going on and he was 100x worse for it.

vidarh 3y ago

There's often a long overlap, though. Both my grandmothers died with Alzheimers. We'lll never know how long they knew, but in retrospect it's clear they knew of the decline for quite some time. My mothers mother avoided hospital until it became too apparent to everyone around here that my grandfather tricker her. She'd make jokes about her failing memory for years, and while some of it might have been genuine, in retrospect odds are she noticed it was getting bad and was obscuring it with humour. For years afterwards, she would forget conversations partway through them, but clearly be aware that something was wrong. E.g. for some time she recognised me, but would wonder when I got there and how long I'd been there, and occasionally my name and who I was would slip, but she was otherwise lucid enough to understand that this was not normal. My dads mother managed to hide the decline until one day my grandfather was going in to hospital for a minor operation, and she refused to get out of bed. The last time I saw her before that, she seemed lucid and held a conversation. I never had another conversation with her, though she lived another decade - she went non-verbal almost overnight, but it was clear this wasn't some sudden physical change; she'd held it together until then, and gave up. It might be her cognitive decline was faster, and less cruel, but we really don't know if it was, or if she just managed to conceal it until the very brink. How much after that she managed to hold on to enough to recognise any of us - including her husband we don't know, because shortly after she went non-verbal she mostly stopped moving. But one of the cruelest parts of Alzheimers is what it does for those left behind - my grandfather spent a whole decade in his 70's and 80's walking to the nursing home, sitting with her all day, every day, then walking home, after she was for all intents and purposes gone.

ghufran_syed 3y ago
People with severe alzheimers have a major problem with short-term memory. So if they are in an environment where everything is the same as it has been for a long time, then can manage a long time, because their long-term memory is fine. But when something changes (like your grandfather going into hospital), it can often completely destabilize them and they often don't seem to get back to their prior level of functioning. I'm sorry your family had to go through that.

squigz 3y ago

Out of curiosity, have you seen dementia first-hand, or are you just making academic assumptions?

pc86 3y ago
Having first-hand experience from a care perspective doesn't give anyone any more insight into what's going on from a biological or mental standpoint.
- lanstin 3y ago
  I don't think that could possibly be true unless you are yourself very limited in your cognitive capacity. Spending many hours with someone as their cognition is eroded by disease process, how can you help learning about the disease and the consequences? It would be like raising children and ending up not understanding more about developmental psychology. Not saying it will purge your thoughts of all mistakes, but you will learn a lot. Even simple things like the end of the day is a low point of cognition for dementia patients. The cycle between forgetfulness and poor nutrition. How the rhythms of conversation can last longer than the content of the conversations. How music can be a comfort when no words matter. How one can forgot one's children yet still have the ability to see if they are hiding upset feelings. The strange mosaic of skills and abilities that make up our full humanity.

criddell 3y ago

My dad died with Lewy Body Dementia and it was absolutely terrible. He was hallucinating terrible things and would be up all night terrified. I called him once when he was in the hospital and had to be restrained. He begged me to come get him because he thought he had been kidnapped and was being held in a barn somewhere. There was no convincing him that the people around him were doctors and nurses who were trying to help him. After I told him I couldn't come (I was in another country at the time) he begged me to call the police. By the end of the call he told me the barn was on fire and he was going to burn alive. It was enough to convince me that I needed to be in control of when and how I die. My dad had no idea what was going on and he was 100x worse for it.