Right to Die

[Flavus Aquila]

When you're demented or depressed you start losing the ability to decide things like that. Luckily people who are depressed might be able to find a way to deal with it, but people with progressive dementia are not so lucky.

You not understanding the problem doesn't mean you should act as if there's no problem.

As a child, my parents worked late, so I mostly looked after my grandmother who had severe dementia. She sometimes got frustrated, when she had more lucid spells, that her mind was not what it used to be. (She had multiple degrees). But I would say to her that even though she can't do the things she used to (and she really enjoyed what she used to do), we could still enjoy the things we can do now. She would laugh and we would go out in the garden and enjoy her pointing at things for me to look at, dig up, or trim. She never lost her sense of humor and there was always something mischievous about the kind of jobs she had me do. We probably had that same conversation a thousand times, followed by a thousand gardening expeditions. I think that the stressed proportion of her day was a lot less than mine is right now. I just hope that if I get dementia (which is likely given that she had it) that I will have someone encouraging me - and I suspect that my life will be less stressful that it usually is.

Anyhow, I don't think dementia is a problem. We just have a problem with dementia. It is a part of life for about 1/5 of people over 80 - and if there is a problem, it is that people have difficulty in finding enjoyment in their actual life - not just what used to be their life, or what other people have, or what might have been, etc. Depression is different, in that depression is probably characterised by the inability to enjoy - that needs medical/psychological solutions.

When people say that dementia robs people of their dignity, I want to punch those assholes in the face. People whose mental abilities, or emotional control, or bodily control have diminished have not lost any dignity. Dignity comes from character, not how white your linens are, or how well you can follow a complex conversation.

 

[sprinkles]

As a child, my parents worked late, so I mostly looked after my grandmother who had severe dementia. She sometimes got frustrated, when she had more lucid spells, that her mind was not what it used to be. (She had multiple degrees). But I would say to her that even though she can't do the things she used to (and she really enjoyed what she used to do), we could still enjoy the things we can do now. She would laugh and we would go out in the garden and enjoy her pointing at things for me to look at, dig up, or trim. She never lost her sense of humor and there was always something mischievous about the kind of jobs she had me do. We probably had that same conversation a thousand times, followed by a thousand gardening expeditions. I think that the stressed proportion of her day was a lot less than mine is right now. I just hope that if I get dementia (which is likely given that she had it) that I will have someone encouraging me - and I suspect that my life will be less stressful that it usually is.

Yeah and my aunt used to cry and rage and throw things at people and wail for hours on end and we couldn't ask her what was making her upset because all she could do was groan and yell. Good times.

 

[Flavus Aquila]

@Flavus Aquila
Also if you're really interested in supporting and loving people, you should know that "What is wrong with x?" is not a supportive question. It's actually kind of trivializing and rude.

Trivializing the trivial is not rude. I've seen women have virtual breakdowns because they were getting wrinkles, organised a procedure and ended up with a botched face-lift. Obviously, the emotions aren't trivial, but surely wrinkles are trivial.

 

[sprinkles]

Trivializing the trivial is not rude. I've seen women have virtual breakdowns because they were getting wrinkles, organised a procedure and ended up with a botched face-lift. Obviously, the emotions aren't trivial, but surely wrinkles are trivial.

It's not trivial. You think you can say something just because you have some experience but you obviously don't know nearly as much as you think you do. Thinking it can't be that bad just because you had an ok experience as a child is incredibly short sighted. You really are trivializing something that you don't understand.

 

[Flavus Aquila]

Yeah and my aunt used to cry and rage and throw things at people and wail for hours on end and we couldn't ask her what was making her upset because all she could do was groan and yell. Good times.

I must admit, that there are such things as happy dementia, worried dementia, angry dementia, etc. I saw a bit of it when my grandmother had to go to a nursing home, after my mother did her back in, from all the lifting to keep grandma dry and clean.

I suppose, if I saw your aunt in a perpetual rage, I would be tempted to give her a tub of objects to throw at others. I mean, there is some satisfaction in throwing stuff if you're pissed off - I suppose I'm to inhibited to throw stuff usually, but if someone's going to town on their anger throwing stuff around, I've got no objections, as long as nothing is being damaged, and people aren't getting injured.

 

[PintoBean]

What's wrong with living with dementia, or depression? Is having a degenerative disease reason to say life is not worth living?

As a society I think we could be so enriched by striving to make the lives of everyone better and happier, especially those people who can't reciprocate our love and care, because giving becomes its own reward...

Nothing is wrong with living with a devastating disease if the sufferer doesn't mind. However, I stated in my OP that I personally would mind. And I would like to make a living will with advanced directives stating as much in order to avoid losing my dignity and autonomy. My problem with assisted suicide is allowing people in the throws of any mental illness to make this decision because by dint of their condition, they most clearly are no longer of sound mind. I 100% agree with you about enriching the lives of others rather than offing them.

 

[sprinkles]

I must admit, that there are such things as happy dementia, worried dementia, angry dementia, etc. I saw a bit of it when my grandmother had to go to a nursing home, after my mother did her back in, from all the lifting to keep grandma dry and clean.

I suppose, if I saw your aunt in a perpetual rage, I would be tempted to give her a tub of objects to throw at others. I mean, there is some satisfaction in throwing stuff if you're pissed off - I suppose I'm to inhibited to throw stuff usually, but if someone's going to town on their anger throwing stuff around, I've got no objections, as long as nothing is being damaged, and people aren't getting injured.

You're not interested in others at all. You're interested in your own ideals. You aren't even trying to understand.

Just stop talking to me. There's something wrong with you.

 

[Flavus Aquila]

Aren't you making a big deal of something you don't understand?

How can you understand unless you go through it yourself?

Are either of us more justified in either making less, or making more of something?

You escalate, I minimise... personally, as long as people's feelings aren't being minimised, I don't think minimising the impact of not having the mind 'firing on all cylinders' on personal dignity is as likely to be destructive to personal dignity, as escalating the impact of mental decline on personal dignity.

So, you can claim to understand more and perpetuate the myth that having a degenerative disease might indeed make life less worth living. And I will claim that such a claim is b.s. and that learning to live with a degenerative disease, and perhaps even enjoy life more because of it is worth doing.

 

[sprinkles]

Aren't you making a big deal of something you don't understand?

How can you understand unless you go through it yourself?

Are either of us more justified in either making less, or making more of something?

You escalate, I minimise... personally, as long as people's feelings aren't being minimised, I don't think minimising the impact of not having the mind 'firing on all cylinders' on personal dignity is as likely to be destructive to personal dignity, as escalating the impact of mental decline on personal dignity.

So, you can claim to understand more and perpetuate the myth that having a degenerative disease might indeed make life less worth living. And I will claim that such a claim is b.s. and that learning to live with a degenerative disease, and perhaps even enjoy life more because of it is worth doing.

You ARE minimizing feelings. THAT'S THE ENTIRE POINT.

 

[PintoBean]

As a child, my parents worked late, so I mostly looked after my grandmother who had severe dementia. She sometimes got frustrated, when she had more lucid spells, that her mind was not what it used to be. (She had multiple degrees). But I would say to her that even though she can't do the things she used to (and she really enjoyed what she used to do), we could still enjoy the things we can do now. She would laugh and we would go out in the garden and enjoy her pointing at things for me to look at, dig up, or trim. She never lost her sense of humor and there was always something mischievous about the kind of jobs she had me do. We probably had that same conversation a thousand times, followed by a thousand gardening expeditions. I think that the stressed proportion of her day was a lot less than mine is right now. I just hope that if I get dementia (which is likely given that she had it) that I will have someone encouraging me - and I suspect that my life will be less stressful that it usually is.

Anyhow, I don't think dementia is a problem. We just have a problem with dementia. It is a part of life for about 1/5 of people over 80 - and if there is a problem, it is that people have difficulty in finding enjoyment in their actual life - not just what used to be their life, or what other people have, or what might have been, etc. Depression is different, in that depression is probably characterised by the inability to enjoy - that needs medical/psychological solutions.

When people say that dementia robs people of their dignity, I want to punch those assholes in the face. People whose mental abilities, or emotional control, or bodily control have diminished have not lost any dignity. Dignity comes from character, not how white your linens are, or how well you can follow a complex conversation.

It sounds like you were an excellent caregiver to your grandmother, that is fantastic and she is very lucky to have had you. However, while you acknowledge that she "got frustrated" I am not sure you realize the spectrum of the problem. Some people like your grandmother are not so lucky to have someone to assist in their 24/7 care in a home environment. In fact, we are getting to the point that many people cannot provide home care to their loved ones. Individuals are reaching well into their 90s now. I worked as caregiver for years, and I cannot tell you the number of 60-some-year-old adult children trying to care for their parents, who had become for all intents and purposes like osteoporotic toddlers. These adult children were trying to balance their lives as wage earners as well as 24/7 daycare providers. Their parents could no longer feed, clean, dress or toilet themselves, and seemingly didn't need to sleep anymore, all the while falling on the floor and fracturing things at all hours. They had great difficult walking, yet were constantly managing to pitch themselves on the floor, or even escape through windows. It literally drove their loved ones who were providing care close to the brink of insanity because it only got worse, never better. That is why people get put in lock-down dementia units (which are grim places!). Not only can dementia patients be "frustrated," they can be downright violent. And it is why there are whole facilities full to the brim with these poor individuals, their care mainly ministered to by poorly trained, understaffed $9-$12/hr caregivers.

I am by no means making a blanket statement that all people with dementia have lives not worth living, or worse that they should be killed in the throws of their disease. My own statements were based upon years of experience seeing this horrible constellation of diseases progress and rob people of memories, dignity and even the autonomy to feed or toilet themselves. I am planning on creating a living a will to avoid any life prolonging intervening care for myself in the event that I cannot be offered assisted suicide upon the finding of such diagnosis. I am only speaking about what I would want for myself, and I can see how others concerned about dementia would want the same.

 

[Flavus Aquila]

You're not interested in others at all. You're interested in your own ideals. You aren't even trying to understand.

Just stop talking to me. There's something wrong with you.

There's something wrong with me, because I'm not interested in adopting, or supporting your worldview, would be a more honest way of saying that.

I think that I am given to hope for positive possibilities in degenerative disease because of my experiences with other people. Mutual experiences. If an ideal emerges from that experience it is because I was inspired by a wonderful person living in a wonderful way. I am not interested in my ideals, rather, in this subject they are inseparable from the warm memories of the small handful of people in my life with a degenerative disease. (Two with dementia, two with terminal cancer, one with degenerative heart failure).

 

[sprinkles]

There's something wrong with me, because I'm not interested in adopting, or supporting your worldview, would be a more honest way of saying that.

I think that I am given to hope for positive possibilities in degenerative disease because of my experiences with other people. Mutual experiences. If an ideal emerges from that experience it is because I was inspired by a wonderful person living in a wonderful way. I am not interested in my ideals, rather, in this subject they are inseparable from the warm memories of the small handful of people in my life with a degenerative disease. (Two with dementia, two with terminal cancer, one with degenerative heart failure).

That's great but what you've been implying all this time is that if anyone feels grief over their situation or another's, they're wrong and it's their fault for feeling that way.

You said you don't want to minimize people's feelings but you're doing it pretty damn hard right now.

 

[Flavus Aquila]

It sounds like you were an excellent caregiver to your grandmother, that is fantastic and she is very lucky to have had you. However, while you acknowledge that she "got frustrated" I am not sure you realize the spectrum of the problem. Some people like your grandmother are not so lucky to have someone to assist in their 24/7 care in a home environment. In fact, we are getting to the point that many people cannot provide home care to their loved ones. Individuals are reaching well into their 90s now. I worked as caregiver for years, and I cannot tell you the number of 60-some-year-old adult children trying to care for their parents, who had become for all intents and purposes like osteoporotic toddlers. These adult children were trying to balance their lives as wage earners as well as 24/7 daycare providers. Their parents could no longer feed, clean, dress or toilet themselves, and seemingly didn't need to sleep anymore, all the while falling on the floor and fracturing things at all hours. They had great difficult walking, yet were constantly managing to pitch themselves on the floor, or even escape through windows. It literally drove their loved ones who were providing care close to the brink of insanity because it only got worse, never better. That is why people get put in lock-down dementia units (which are grim places!). Not only can dementia patients be "frustrated," they can be downright violent. And it is why there are whole facilities full to the brim with these poor individuals, their care mainly ministered to by poorly trained, understaffed $9-$12/hr caregivers.

I am by no means making a blanket statement that all people with dementia have lives not worth living, or worse that they should be killed in the throws of their disease. My own statements were based upon years of experience seeing this horrible constellation of diseases progress and rob people of memories, dignity and even the autonomy to feed or toilet themselves. I am planning on creating a living a will to avoid any life prolonging intervening care for myself in the event that I cannot be offered assisted suicide upon the finding of such diagnosis. I am only speaking about what I would want for myself, and I can see how others concerned about dementia would want the same.

Disease cannot rob people of their dignity. Dignity is lost through willful abdication of it. (That's the rant portion out of the way - but I am absolutely adamant that dignity has nothing to do with any ability - if that were the case, executives and athletes would be the most dignified people on Earth).

What you wrote (quoted above) makes me sigh that being elderly is indeed an unappealing prospect. Unappealing because of the kind of society we live in. I read years ago a reflection of a small community that was mourning the loss of one of its elderly members. Their sorrow was not just for their loss, but also for their diminishment, because the person who had died was the only elderly individual in their 'tribe'. They felt that they could not be a real society without an elder to care for and honor - and they would have to honour the deceased in order to be themselves. We obviously do not live in a society like that anymore. (The account I read was from a post-industrial Western community). If there is a loss of dignity in respect of disease, I think it is us, society, that has lost our dignity in an inability to honour and respectfully care for our infirm and elderly. Sigh.

 

[Flavus Aquila]

That's great but what you've been implying all this time is that if anyone feels grief over their situation or another's, they're wrong and it's their fault for feeling that way.

You said you don't want to minimize people's feelings but you're doing it pretty damn hard right now.

You are close to tantrum, and are throwing overloaded accusations about. Perhaps this usually facilitates your getting other people to agree with you, or at least gets them to shut up about opinions that don't coincide with yours. I am not minimising feelings, what I am doing is trying to engage with someone seems to be more interested in using the "getting shitty" approach to get consensus.

 

[sprinkles]

Elderly people have their own feelings too. Talking about them like they don't is not very respectful or dignified. They're not your pets.

 

[sprinkles]

You are close to tantrum, and are throwing overloaded accusations about. Perhaps this usually facilitates your getting other people to agree with you, or at least gets them to shut up about opinions that don't coincide with yours. I am not minimising feelings, what I am doing is trying to engage with someone seems to be more interested in using the "getting shitty" approach to get consensus.

You're minimizing my feelings. I feel that you are. I told you what was wrong and rather than try and remedy it, you have now gone to belittling me outright.

You're trampling the hell out of my feelings. I'm telling you it hurts, and you're responding with the equivalent of "fuck you, you're wrong." That's how I feel about it.

 

[Flavus Aquila]

Elderly people have their own feelings too. Talking about them like they don't is not very respectful or dignified. They're not your pets.

This quote plus the next quote:

You're minimizing my feelings. I feel that you are. I told you what was wrong and rather than try and remedy it, you have now gone to belittling me outright.

You're trampling the hell out of my feelings. I'm telling you it hurts, and you're responding with the equivalent of "fuck you, you're wrong." That's how I feel about it.

I think I have called you out. However, if I am wrong, and you are not trying to manipulate others into agreeing with you, first by getting shitty and then by acting all hurt and 'trampled' - then I apologise.

In all seriousness, how can you expect to have a conversation, when you either feel trampled, or get all shitty because the other person has a different point of view/opinion to yours. Most differing points of view can be integrated into a synthesis of the two. But some cannot. Ie. You can't expect/require others to agree with you.

**anyhow this has gone way off topic - apologies to the OP**

 

[sprinkles]

This quote plus the next quote:



I think I have called you out. However, if I am wrong, and you are not trying to manipulate others into agreeing with you, first by getting shitty and then by acting all hurt and 'trampled' - then I apologise.

In all seriousness, how can you expect to have a conversation, when you either feel trampled, or get all shitty because the other person has a different point of view/opinion to yours. Most differing points of view can be integrated into a synthesis of the two. But some cannot. Ie. You can't expect/require others to agree with you.

I'm not trying to have a conversation. I would simply like for you to be more supportive. I don't want you to agree, I want you to be considerate. I would like you to support me by being considerate and caring about how I feel. You don't have to agree with it. Is that a problem?

 

[PintoBean]

Disease cannot rob people of their dignity. Dignity is lost through willful abdication of it. (That's the rant portion out of the way - but I am absolutely adamant that dignity has nothing to do with any ability...

I absolutely respect this stance. My beloved father has gone completely blind and yet remains totally himself, in full possession of his dignity, with a high degree of QOL. Perhaps we can look at dignity as subjective term though. I would personally find it undignified and humiliating if I required spoon feeding, to no longer understand or speak coherent words, to spend the day urinating and defecating on myself. I personally would not want to be alive to experience this or for my loved ones to experience me this way and have to care for me. I can only speak for myself as to what I find to be an utter loss of adult dignity.

 

[Flavus Aquila]

I absolutely respect this stance. My beloved father has gone completely blind and yet remains totally himself, in full possession of his dignity, with a high degree of QOL. Perhaps we can look at dignity as subjective term though. I would personally find it undignified and humiliating if I required spoon feeding, to no longer understand or speak coherent words, to spend the day urinating and defecating on myself. I personally would not want to be alive to experience this or for my loved ones to experience me this way and have to care for me. I can only speak for myself as to what I find to be an utter loss of adult dignity.

I can understand what you feel about being alive, but with diminished faculties, or dependent on others. I have been in hospital a couple of times and I must admit that I felt a very profound sense of shame upon the realisation that I could not take care of my own hygiene independently at first. Fortunately IV's and catheters don't really give you the means, or ability to soil yourself badly. Nevertheless, the profound shame I felt was vastly eclipsed by the profound gratitude I felt for the care I received. Not just the care, but the type of care I received. There is something very striking about being treated with respect when you're feeling ashamed. On the flip side, it seems that residents at aged care places seem to be babied, or treated like daddy's little girl. I don't know if this is preferable to the kind of respect shown to someone who is in his 30's. I suppose hospitals seem to prioritise respect and nursing homes seem to prioritise love?