4 ms·

Would you prefer to suffer through something like cancer, fully aware of your decline and unable to do anything but with the will to do so? Or just be completel

Would you prefer to suffer through something like cancer, fully aware of your decline and unable to do anything but with the will to do so? Or just be completely unaware of what is going on but not necessarily in poor health? Dementia is certainly terrible in a unique and disturbing way for the afflicted and people that care about them, but Im not so sure some of the more understandable alternatives would be preferable.

user_7832 3y ago
If you're asking what's worse, body dying with a a good mind, or mind dying eg in dementia but good body, the answer is almost 100% the latter being worse. I know someone who had Alzheimer's. Was in excellent physical shape, had biomarkers of someone 20 years younger. Would go for daily walks for decades, consistently did yoga etc. The issue, with late stage Alzheimer's (and possibly dementia in general), is that the brain starts to forget so many things it's not even funny (it never was). You forget to swallow water. You forget to chew food. You forget what the bathroom is for. It's far from "living with dignity", even if the body is still physically capable. I think lock-in syndrome is the only other medical situation I'd consider similarly traumatizing.
- Ntrails 3y ago
  > 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.
- Ferret7446 3y ago
  Worse for whom? The latter seems a lot less distressing for the subject (assuming you have the "blissful ignorance" dementia and not "constant fear" dementia"), the former sounds like a novel form of torture. There's a reason we sedate people undergoing most medical operations.
  - user_7832 3y ago
    Worse for both, the patient & the loved ones. Even with "blissful ignorance" dementia (in my limited experience) people can very quickly get agitated. Yes, they may calm down quickly too, but it's not always calm. The problem with dementia isn't just at the "old person chilling in room" state, as I mentioned if it progresses far enough (which is nearly guaranteed if they live long enough) basic bodily functions become difficult. A parallel case of eg paralyzed people (both of whom are unable to swallow properly for different reasons) shows how frequently they can die from something as simple as choking on their own saliva. > There's a reason we sedate people undergoing most medical operations. I'm not sure what you mean by this, if you're referring to people waking up but being unable to move being potentially torturous I agree.
klibertp 3y ago
> Or just be completely unaware of what is going on but not necessarily in poor health? It's not either-or, it's both. It takes time to reach the point where you're "unaware". Before that, you're fully aware of what's happening and that there's no escape. After that point, it will probably get "better" for you, the patient. But it also gets way, way worse for everyone around you. With cancer, you're still yourself - you die as the person you were. With dementia (or Alzheimer's at least), you die twice, and people around you are left to tend to your corpse, which happens to move and eat (even if you forget to chew and swallow) for years after you're gone.
- vidarh 3y ago
  Exactly, as I've mentioned elsewhere, both my grandmothers got Alzheimers, and I have basically nothing but a couple of vague memories of them for the last few years of each of their lives, but their partners spent years tending to people who were already gone, both seeing them whither away, but also in effect losing so much of what was left of their own lives. To me, they pretty much died once they stopped recognizing us. For one of them that was very soon after we realised something was wrong, and yet her body survived a decade after her mind was gone and it was awful seeing how it reduced her husband who spent all of those years in the same nursing home doing nothing but tending to her. My other grandfather died of cancer a few years into his wife's alzheimers hospitalisation and frankly it feels to me like he got the better way out of him and his wife (but largely because it was a very aggressive cancer and he went during an attempted operation; maybe I'd have thought differently about it if he'd struggled with it for years).
the_af 3y ago
Both scenarios scare me terribly. I wish I'll never have to find out which is worse, not for me or for any of my loved ones, but of course this is very unlikely...
13of40 3y ago
One thing I wonder about: My dad had dementia and ended up pretty batty toward the end, though it came in waves and he was pretty lucid when he decided to "go". As I get older, I notice myself forgetting things more, but it mostly bothers me in the context of forgetting to do things at work. If I were retired, I'm not sure how much having a terrible short-term memory would affect my level of happiness. I can see myself living like my mother-in-law is now, in a kind of unagitated rolling 3 minute window of perception. Terrible for the people who have to clean up after me, but not necessarily so much from the other side of the glass.

user_7832 3y ago

If you're asking what's worse, body dying with a a good mind, or mind dying eg in dementia but good body, the answer is almost 100% the latter being worse. I know someone who had Alzheimer's. Was in excellent physical shape, had biomarkers of someone 20 years younger. Would go for daily walks for decades, consistently did yoga etc. The issue, with late stage Alzheimer's (and possibly dementia in general), is that the brain starts to forget so many things it's not even funny (it never was). You forget to swallow water. You forget to chew food. You forget what the bathroom is for. It's far from "living with dignity", even if the body is still physically capable. I think lock-in syndrome is the only other medical situation I'd consider similarly traumatizing.

Ntrails 3y ago
> 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.
Ferret7446 3y ago
Worse for whom? The latter seems a lot less distressing for the subject (assuming you have the "blissful ignorance" dementia and not "constant fear" dementia"), the former sounds like a novel form of torture. There's a reason we sedate people undergoing most medical operations.
- user_7832 3y ago
  Worse for both, the patient & the loved ones. Even with "blissful ignorance" dementia (in my limited experience) people can very quickly get agitated. Yes, they may calm down quickly too, but it's not always calm. The problem with dementia isn't just at the "old person chilling in room" state, as I mentioned if it progresses far enough (which is nearly guaranteed if they live long enough) basic bodily functions become difficult. A parallel case of eg paralyzed people (both of whom are unable to swallow properly for different reasons) shows how frequently they can die from something as simple as choking on their own saliva. > There's a reason we sedate people undergoing most medical operations. I'm not sure what you mean by this, if you're referring to people waking up but being unable to move being potentially torturous I agree.

klibertp 3y ago

> Or just be completely unaware of what is going on but not necessarily in poor health? It's not either-or, it's both. It takes time to reach the point where you're "unaware". Before that, you're fully aware of what's happening and that there's no escape. After that point, it will probably get "better" for you, the patient. But it also gets way, way worse for everyone around you. With cancer, you're still yourself - you die as the person you were. With dementia (or Alzheimer's at least), you die twice, and people around you are left to tend to your corpse, which happens to move and eat (even if you forget to chew and swallow) for years after you're gone.

vidarh 3y ago
Exactly, as I've mentioned elsewhere, both my grandmothers got Alzheimers, and I have basically nothing but a couple of vague memories of them for the last few years of each of their lives, but their partners spent years tending to people who were already gone, both seeing them whither away, but also in effect losing so much of what was left of their own lives. To me, they pretty much died once they stopped recognizing us. For one of them that was very soon after we realised something was wrong, and yet her body survived a decade after her mind was gone and it was awful seeing how it reduced her husband who spent all of those years in the same nursing home doing nothing but tending to her. My other grandfather died of cancer a few years into his wife's alzheimers hospitalisation and frankly it feels to me like he got the better way out of him and his wife (but largely because it was a very aggressive cancer and he went during an attempted operation; maybe I'd have thought differently about it if he'd struggled with it for years).

the_af 3y ago

Both scenarios scare me terribly. I wish I'll never have to find out which is worse, not for me or for any of my loved ones, but of course this is very unlikely...

13of40 3y ago

One thing I wonder about: My dad had dementia and ended up pretty batty toward the end, though it came in waves and he was pretty lucid when he decided to "go". As I get older, I notice myself forgetting things more, but it mostly bothers me in the context of forgetting to do things at work. If I were retired, I'm not sure how much having a terrible short-term memory would affect my level of happiness. I can see myself living like my mother-in-law is now, in a kind of unagitated rolling 3 minute window of perception. Terrible for the people who have to clean up after me, but not necessarily so much from the other side of the glass.