everyone was aware of the fact that tuesday was the deadline
June 24, 2014 5:50 AM Subscribe
"This story is in no way an endorsement of suicide. It's a description of one woman's choice and what came of it."
posted by Fizz at 5:59 AM on June 24, 2014
posted by Fizz at 5:59 AM on June 24, 2014
I hope to live a long and active life, but if faced with a lengthy, debilitating illness I will seriously consider something like this. And fuck anyone who would insist that I instead subject myself and my family to years of suffering and financial drain instead.
posted by TedW at 6:05 AM on June 24, 2014 [34 favorites]
posted by TedW at 6:05 AM on June 24, 2014 [34 favorites]
I remember when my grandfather was in the late stages of his Alzheimers. He would often see his reflection in the mirror, not recognize his own face, and then demand to know who the intruder was.
No thanks, none of that for me.
posted by Avenger at 6:08 AM on June 24, 2014 [11 favorites]
No thanks, none of that for me.
posted by Avenger at 6:08 AM on June 24, 2014 [11 favorites]
Harrowing and extremely brave. I hope I never get Alzheimer's, but if I do, I hope I can go like she did.
A close relative is in the grip of a rare early-onset condition related to Alzheimer's, although not, mercifully, as cruel. My family's health history on that side is extremely weird and there really isn't a good way to tell whether we're looking at a coincidental collection of sporadic illnesses or some kind of underlying issue - so I'm not sure whether I have elevated risk or not. We've been very, very fortunate to have both the family and financial resources to care for my ill relative. There's no way I will have the same situation, should I get this condition. As I get older, I find myself thinking more and more about what I'll do if I'm diagnosed, and how quickly I'll have to do it. Being able to get some non-painful drugs and take them myself - I just hope and pray that will be possible.
Trying to keep people in failing bodies or miserable lives when they truly, truly want to die - that's always struck me as incredibly cruel, misguided and even selfish.
posted by Frowner at 6:18 AM on June 24, 2014 [9 favorites]
A close relative is in the grip of a rare early-onset condition related to Alzheimer's, although not, mercifully, as cruel. My family's health history on that side is extremely weird and there really isn't a good way to tell whether we're looking at a coincidental collection of sporadic illnesses or some kind of underlying issue - so I'm not sure whether I have elevated risk or not. We've been very, very fortunate to have both the family and financial resources to care for my ill relative. There's no way I will have the same situation, should I get this condition. As I get older, I find myself thinking more and more about what I'll do if I'm diagnosed, and how quickly I'll have to do it. Being able to get some non-painful drugs and take them myself - I just hope and pray that will be possible.
Trying to keep people in failing bodies or miserable lives when they truly, truly want to die - that's always struck me as incredibly cruel, misguided and even selfish.
posted by Frowner at 6:18 AM on June 24, 2014 [9 favorites]
Opposing physician-assisted suicide makes no sense to me. How can it be in any way better to leave it to people themselves, when they might lack the knowledge or ability to kill themselves properly? You'll just be consigning more people to grief and torture.
posted by brokkr at 6:40 AM on June 24, 2014 [2 favorites]
posted by brokkr at 6:40 AM on June 24, 2014 [2 favorites]
From the first link: "She bought a copy of "The Peaceful Pill Handbook" and chose to take her life with pentobarbital.
From the second link: "Assisted suicide is not legal in New York, so Sandy went into the bedroom alone to drink the drug overdose she'd ordered online."
Can you really order pentobarbital online? Surprising, if it's so.
posted by Daddy-O at 6:40 AM on June 24, 2014
From the second link: "Assisted suicide is not legal in New York, so Sandy went into the bedroom alone to drink the drug overdose she'd ordered online."
Can you really order pentobarbital online? Surprising, if it's so.
posted by Daddy-O at 6:40 AM on June 24, 2014
When the time comes, I want to do this.
And I want it to be okay. Emotionally for my family, as well as completely legal.
We're so good at extending life. There's still so very, very far to go on extending "living"
posted by DigDoug at 6:41 AM on June 24, 2014 [2 favorites]
And I want it to be okay. Emotionally for my family, as well as completely legal.
We're so good at extending life. There's still so very, very far to go on extending "living"
posted by DigDoug at 6:41 AM on June 24, 2014 [2 favorites]
I sympathize with some arguments both for and against assisted suicide.
That people in the US have to worry about the financial toll of end-of-life/hospice care on their surviving family members, and that this could enter into such a decision (as per a comment above; it doesn't sound like this was the case in the fpp), is seriously messed up though.
posted by eviemath at 6:46 AM on June 24, 2014
That people in the US have to worry about the financial toll of end-of-life/hospice care on their surviving family members, and that this could enter into such a decision (as per a comment above; it doesn't sound like this was the case in the fpp), is seriously messed up though.
posted by eviemath at 6:46 AM on June 24, 2014
(As in, it's entirely reasonable to worry about personally. But it's indicative of a major failure in the US health care system that this is a thing that people have to worry about.)
posted by eviemath at 6:48 AM on June 24, 2014 [5 favorites]
posted by eviemath at 6:48 AM on June 24, 2014 [5 favorites]
While the cost of health care in the US is indeed truly fucked up, I think that it becomes a bit of a red herring in these discussions. I mean, if there were some amount of money that would actually cure/prevent Alzheimer's or ALS or terminal cancer, I bet a lot of people would come up with the money even if it bankrupt them and their extended family. But since money won't help these cases, the focus is on control and, as it's framed in a lot of the advocacy, death with dignity.
I, too, have had family members go through horrible extended and irreversible decline. It has made me a staunch supporter of death with dignity laws and convinced me that I'll handle matters like this woman did should it happen to me. Surrounded by loved ones, still able to communicate, and drifting away in your family bed with your partner holding you? Hard to come up with a better scenario for anyone's death.
posted by TwoStride at 6:54 AM on June 24, 2014 [7 favorites]
I, too, have had family members go through horrible extended and irreversible decline. It has made me a staunch supporter of death with dignity laws and convinced me that I'll handle matters like this woman did should it happen to me. Surrounded by loved ones, still able to communicate, and drifting away in your family bed with your partner holding you? Hard to come up with a better scenario for anyone's death.
posted by TwoStride at 6:54 AM on June 24, 2014 [7 favorites]
Phenobarbital is a Schedule IV drug. (By comparison, Schedule I includes heroin, cocaine, marijuana; Schedule II is Oxycontin etc.) Schedule IV drugs, which also include benzos like Valium and Xanax, are pretty easy to order from other countries, even though it is not legal to do so.
The Hemlock Society (now defunct) used to recommend a protocol involving putting a plastic bag over your head to ensure death. That would be a little too creepy for me.
posted by kozad at 6:56 AM on June 24, 2014 [1 favorite]
The Hemlock Society (now defunct) used to recommend a protocol involving putting a plastic bag over your head to ensure death. That would be a little too creepy for me.
posted by kozad at 6:56 AM on June 24, 2014 [1 favorite]
I cannot even deal with the surviving member of long-married spouses talking about letting the other one go. I cannot. I've only been married two years and just thinking about having to be without him makes my whole chest hurt.
posted by Made of Star Stuff at 6:57 AM on June 24, 2014 [13 favorites]
posted by Made of Star Stuff at 6:57 AM on June 24, 2014 [13 favorites]
I've probably told this one before, but my paternal grandfather had Alzheimer's. (Grandma, dreading the stigma of a named disease, still refers to it as "elderly dementia".) He really wasn't bad, comparatively; he still recognized people from his youth, sometimes my dad, and so on. I was always, "Young man", as was my dad, for the last year of his life.
Grandpa, as a long-time smoker, was also prone to pneumonia, so he spent a lot of time in recovery homes. On his 84th birthday, we all went out to Our Lady of Life and had apple pie a la mode, a tradition of at least 40 years. My sister who lives out of town brought her kids in, and he was surrounded with all the kids, grandkids, and great grandkids. He wasn't sure who most of us were during the party.
As I was getting up to leave, he grabbed my arm. "Chris, thanks a lot for coming," the first time he'd recognized me without prodding in a long, long time.
Two days later he died of a pre-dawn heart attack. My last living memory of him is him knowing my name, something I'll cherish forever.
Fuck alzheimers.
posted by notsnot at 7:04 AM on June 24, 2014 [26 favorites]
Grandpa, as a long-time smoker, was also prone to pneumonia, so he spent a lot of time in recovery homes. On his 84th birthday, we all went out to Our Lady of Life and had apple pie a la mode, a tradition of at least 40 years. My sister who lives out of town brought her kids in, and he was surrounded with all the kids, grandkids, and great grandkids. He wasn't sure who most of us were during the party.
As I was getting up to leave, he grabbed my arm. "Chris, thanks a lot for coming," the first time he'd recognized me without prodding in a long, long time.
Two days later he died of a pre-dawn heart attack. My last living memory of him is him knowing my name, something I'll cherish forever.
Fuck alzheimers.
posted by notsnot at 7:04 AM on June 24, 2014 [26 favorites]
What I think about is ruining my partner's life by destroying their career (since we couldn't afford full time care so they'd have to quit and try to live on disability and savings, and the condition that my near relative has requires full time care - and it's early-onset, so many of the retirement-age options aren't available) and draining their savings (such as we have) so that I could be supported in a state of increasing confusion, depression and fear. I certainly fear the loss of self, but it seems like if that's coming anyway, I fear far more leaving behind me the total wreckage of my partner's life. I would infinitely rather die right away than force my partner into the eight to ten years of dementia care that are involved.
If you're physically strong and young and you have a dementing disorder, you just go on living. And you need care all the time.
posted by Frowner at 7:05 AM on June 24, 2014 [12 favorites]
If you're physically strong and young and you have a dementing disorder, you just go on living. And you need care all the time.
posted by Frowner at 7:05 AM on June 24, 2014 [12 favorites]
Opposing physician-assisted suicide makes no sense to me. How can it be in any way better to leave it to people themselves, when they might lack the knowledge or ability to kill themselves properly? You'll just be consigning more people to grief and torture.
Even in states where physician-assisted suicide is legal, it seems unclear whether or not Sandra Bern would have qualified as "terminally ill" in the states that allow assisted suicide, which generally means has an illness that will kill them within 6 months. I am not her doctor, of course.
I have read a few completely-reasonable objections to physician-assisted suicide laws from the left. Some argue that they do not go far enough in that physicians are still gatekeepers of who should live and who should die, and that everyone has a right to medical suicide, even if they are physically healthy. Another argument is often voiced by disability activist groups like Not Dead Yet who are concerned about how the social stigma against people with disabilities affects the national conversation about what lives are worth living.
posted by muddgirl at 7:10 AM on June 24, 2014 [9 favorites]
Even in states where physician-assisted suicide is legal, it seems unclear whether or not Sandra Bern would have qualified as "terminally ill" in the states that allow assisted suicide, which generally means has an illness that will kill them within 6 months. I am not her doctor, of course.
I have read a few completely-reasonable objections to physician-assisted suicide laws from the left. Some argue that they do not go far enough in that physicians are still gatekeepers of who should live and who should die, and that everyone has a right to medical suicide, even if they are physically healthy. Another argument is often voiced by disability activist groups like Not Dead Yet who are concerned about how the social stigma against people with disabilities affects the national conversation about what lives are worth living.
posted by muddgirl at 7:10 AM on June 24, 2014 [9 favorites]
My grandmother had Alzheimer's and one of my greatest fear is that I or one or both of my parents might come down with the disease. I too would want to kill myself at some point, both to spare myself experiencing the slow decline of my faculties and to spare my family the monetary and emotional costs of caring for me.
posted by Aizkolari at 7:23 AM on June 24, 2014
posted by Aizkolari at 7:23 AM on June 24, 2014
Another argument is often voiced by disability activist groups like Not Dead Yet who are concerned about how the social stigma against people with disabilities affects the national conversation about what lives are worth living.
Yes, how I understand it, part of the fear is that assisted suicide will create pressure on those whose lives society considers to be worth less (such as the disabled, but any given group that's considered non-normative is at risk) to commit suicide or to not be given treatment.
There's a sort of overlap there with DNRs -- there's a racial disparity in who have DNRs, in that more white people have DNRs relative to other groups, and iIrc especially black people. The theory is that it's because white people are more likely to assume that that the doctors caring for them value their lives and will save and help them if possible, whereas other groups (for valid reasons) aren't as comfortable with that assumption.
On the one hand, I believe strongly that suicide should be an option for any individual, because control over one's own body in such a fundamental sense is essential to personal agency. But with the social factors at work, with some people's lives valued socially as "less than" others, it can be difficult to avoid de facto coercing people into signing their own death warrants, and...honestly, I don't know.
posted by rue72 at 7:33 AM on June 24, 2014 [12 favorites]
Yes, how I understand it, part of the fear is that assisted suicide will create pressure on those whose lives society considers to be worth less (such as the disabled, but any given group that's considered non-normative is at risk) to commit suicide or to not be given treatment.
There's a sort of overlap there with DNRs -- there's a racial disparity in who have DNRs, in that more white people have DNRs relative to other groups, and iIrc especially black people. The theory is that it's because white people are more likely to assume that that the doctors caring for them value their lives and will save and help them if possible, whereas other groups (for valid reasons) aren't as comfortable with that assumption.
On the one hand, I believe strongly that suicide should be an option for any individual, because control over one's own body in such a fundamental sense is essential to personal agency. But with the social factors at work, with some people's lives valued socially as "less than" others, it can be difficult to avoid de facto coercing people into signing their own death warrants, and...honestly, I don't know.
posted by rue72 at 7:33 AM on June 24, 2014 [12 favorites]
And yeah, Bem died "well," she made the best of a terrible situation. But to live with the Reaper hanging over your head like she did for years -- that's already terrible, that must have been an awful struggle. I felt for her daughter when she mentioned how Bem would bring up her eventual suicide so much that Emily eventually just told her she couldn't talk about it with her anymore.
I can't say I *hope* to go like Bem did because those years of waiting to deteriorate, and waiting to kill herself, regardless that it allowed the family to let go more easily after she actually died. Honestly, I'd rather just not die at all, though everyone says that's not an option.
posted by rue72 at 7:38 AM on June 24, 2014 [4 favorites]
I can't say I *hope* to go like Bem did because those years of waiting to deteriorate, and waiting to kill herself, regardless that it allowed the family to let go more easily after she actually died. Honestly, I'd rather just not die at all, though everyone says that's not an option.
posted by rue72 at 7:38 AM on June 24, 2014 [4 favorites]
I wish we treated people with the same dignity that we would give to a cat or dog in a similar situation.
posted by dr_dank at 7:39 AM on June 24, 2014 [7 favorites]
posted by dr_dank at 7:39 AM on June 24, 2014 [7 favorites]
Not to take away from the primary discussion:
In case someone is only reading the comments, it's worth noting that the person about whom these articles are written, Sandra Bem, was a rather celebrated psychologist who studied gender roles, gender stereotypes and androgyny.
Her wikipedia page.
also, .
posted by The Potate at 7:51 AM on June 24, 2014 [1 favorite]
In case someone is only reading the comments, it's worth noting that the person about whom these articles are written, Sandra Bem, was a rather celebrated psychologist who studied gender roles, gender stereotypes and androgyny.
Her wikipedia page.
also, .
posted by The Potate at 7:51 AM on June 24, 2014 [1 favorite]
In her place, I would hope to do exactly the same. She was lucky to have that option.
posted by emjaybee at 7:54 AM on June 24, 2014 [1 favorite]
posted by emjaybee at 7:54 AM on June 24, 2014 [1 favorite]
I have every intention of doing something very similar as does my husband. We have been married for 15 years, we've known each other for 23 and we are currently living in, what I call "bonus rounds" - I will support his decision as he has agreed to support mine whenever that time may come.
posted by Sophie1 at 8:02 AM on June 24, 2014 [1 favorite]
posted by Sophie1 at 8:02 AM on June 24, 2014 [1 favorite]
.
Lucky. And brave. And focused. I think it's hard to plan for, as people have good and bad days, and you keep hoping for more good days. You always want more time.
I have a physical illness that hasn't yet hit the fan, but may become quite debilitating someday. I would like to be able to choose the right window for a peaceful, certain, non-intrusive ending, filled with love and grace and dignity.
posted by mochapickle at 8:07 AM on June 24, 2014 [1 favorite]
Lucky. And brave. And focused. I think it's hard to plan for, as people have good and bad days, and you keep hoping for more good days. You always want more time.
I have a physical illness that hasn't yet hit the fan, but may become quite debilitating someday. I would like to be able to choose the right window for a peaceful, certain, non-intrusive ending, filled with love and grace and dignity.
posted by mochapickle at 8:07 AM on June 24, 2014 [1 favorite]
.
Death with dignity is the only sane position for a compassionate person to support.
posted by feckless fecal fear mongering at 8:34 AM on June 24, 2014 [1 favorite]
Death with dignity is the only sane position for a compassionate person to support.
posted by feckless fecal fear mongering at 8:34 AM on June 24, 2014 [1 favorite]
I had heard of Daryl Bem before, because he is the originator of the "exotic becomes erotic" theory of sexual orientation. However, I did not know that Sandra Bem was the researcher responsible for convincing the Supreme Court to end the practice of separate "men wanted" and "women wanted" classified ads. It's still hard to believe that was a thing that was living memory for some people.
.
posted by jonp72 at 8:36 AM on June 24, 2014 [3 favorites]
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posted by jonp72 at 8:36 AM on June 24, 2014 [3 favorites]
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posted by and they trembled before her fury at 8:40 AM on June 24, 2014
posted by and they trembled before her fury at 8:40 AM on June 24, 2014
I turned NPR off when this was about to air, because suicide runs in my family. I didn't realize until I looked at this post that it was Sandra Bem. My kids grew up with her kids, my youngest son and her son were on math teams together. I'm glad someone linked to her wikipedia page.
I wonder if high-achieving people deal with Alzheimer's differently than others? Like if they can't be their usual brilliant selves they don't want to be at all? I have very mixed feelings about assisted suicide.
Before I looked at this post I was reading responses to the neighbor's pitbulls question on the green and it seemed like most responders were very sympathetic to the dogs, and oh no, don't call animal control, they might euthanize.
posted by mareli at 9:33 AM on June 24, 2014 [4 favorites]
I wonder if high-achieving people deal with Alzheimer's differently than others? Like if they can't be their usual brilliant selves they don't want to be at all? I have very mixed feelings about assisted suicide.
Before I looked at this post I was reading responses to the neighbor's pitbulls question on the green and it seemed like most responders were very sympathetic to the dogs, and oh no, don't call animal control, they might euthanize.
posted by mareli at 9:33 AM on June 24, 2014 [4 favorites]
Dealing with my mother's descent into the hell of Alzheimer's has pretty much convinced me that I will end myself before I'm too far gone. There's simply no good ending to it.
posted by Thorzdad at 9:47 AM on June 24, 2014 [5 favorites]
posted by Thorzdad at 9:47 AM on June 24, 2014 [5 favorites]
I wonder if high-achieving people deal with Alzheimer's differently than others? Like if they can't be their usual brilliant selves they don't want to be at all? I have very mixed feelings about assisted suicide.
The issue with dementing illness isn't that you're "not your usual brilliant self" - it's that you're depressed, afraid, confused, sometimes subject to fits of rage, wonder why your [dead for many years] parents aren't coming to visit you, unable to go to the bathroom on your own, unable to remember if the food on your plate is your food...and eventually, you get physical deterioration.
And all of this with merciless, merciless financial and material demands on your relatives that can go on for years, destroying their health and financial stability, so that as you decline, you do so in the full knowledge that your condition is wreaking havoc on the lives of those you love.
Believe me, I've seen this up close and personal, and rather recently. You retain enough consciousness to be afraid - terribly afraid - for a very long time.
posted by Frowner at 9:49 AM on June 24, 2014 [19 favorites]
The issue with dementing illness isn't that you're "not your usual brilliant self" - it's that you're depressed, afraid, confused, sometimes subject to fits of rage, wonder why your [dead for many years] parents aren't coming to visit you, unable to go to the bathroom on your own, unable to remember if the food on your plate is your food...and eventually, you get physical deterioration.
And all of this with merciless, merciless financial and material demands on your relatives that can go on for years, destroying their health and financial stability, so that as you decline, you do so in the full knowledge that your condition is wreaking havoc on the lives of those you love.
Believe me, I've seen this up close and personal, and rather recently. You retain enough consciousness to be afraid - terribly afraid - for a very long time.
posted by Frowner at 9:49 AM on June 24, 2014 [19 favorites]
The thing is, my relative has good days, and good hours. She chose to live out this illness, and we were unbelievably fortunate to be able to care for her. But this isn't even one of the really brutal dementias - this is an Alzheimer's-related dementia, molecularly-speaking, which spares a lot more of the memory and personality a lot longer than pretty much any other. But what about the fronto-temoral-lobe dementias, the ones where you get delusions, or you go from being an active anti-racist in your healthy life to screaming racist slurs at your carers? The ones where you end up running naked down the street trying to escape from the family who takes care of you? The ones where you attack your carers and have to be restrained? They are terrible.
I had a more distant relative who went out convinced that she was trapped in a room with decaying corpses under the bed. That's what "not being her brilliant self" entailed for her - the lived conviction that she was in a horror movie.
posted by Frowner at 9:56 AM on June 24, 2014 [9 favorites]
I had a more distant relative who went out convinced that she was trapped in a room with decaying corpses under the bed. That's what "not being her brilliant self" entailed for her - the lived conviction that she was in a horror movie.
posted by Frowner at 9:56 AM on June 24, 2014 [9 favorites]
My father died two months ago. In his sleep, heart attack, peacefully as far as we can tell. He was fairly healthy otherwise, as far as we could tell, he never went to the doctor. It was too soon and I am convinced that he could have lived quite a bit longer while still being active if he had seen a doctor. There is a small mercy here though.
His father died after days of heroic measures (which often seem to just be the echoes of heroic medicine, this time with a little hope of saving a life) at the age of 92. When I saw my grandfather for the last time, laid out in the hospital bed, before the final series of complications took him, he was a old, broken man. He could still recognize me, his mind was still there, but his brain was perhaps the only part of his body that was still fully going. When his death came, it was in many ways a relief. After that, my parents decided that beyond simple resuscitation, no means were to be made to keep them going. I cannot say just how thankful I am that my father never had to go through any of that.
So I've seen the physical side of this and it was terrifying. The mental side, well, that is even more terrifying. Because it isn't a matter of turning off a ventilator or deciding not to have yet another round of thoracic surgery even if that means death in a few days. When the body shuts down, we are slowly learning to accept that and let things go. The mental side has to be caught earlier enough so that the person in question can make the decision. I am not advocating that any one else have that power, but the idea of not seeing it coming and then being trapped in a mind that is not mine for years scares me more than death.
posted by Hactar at 10:05 AM on June 24, 2014 [1 favorite]
His father died after days of heroic measures (which often seem to just be the echoes of heroic medicine, this time with a little hope of saving a life) at the age of 92. When I saw my grandfather for the last time, laid out in the hospital bed, before the final series of complications took him, he was a old, broken man. He could still recognize me, his mind was still there, but his brain was perhaps the only part of his body that was still fully going. When his death came, it was in many ways a relief. After that, my parents decided that beyond simple resuscitation, no means were to be made to keep them going. I cannot say just how thankful I am that my father never had to go through any of that.
So I've seen the physical side of this and it was terrifying. The mental side, well, that is even more terrifying. Because it isn't a matter of turning off a ventilator or deciding not to have yet another round of thoracic surgery even if that means death in a few days. When the body shuts down, we are slowly learning to accept that and let things go. The mental side has to be caught earlier enough so that the person in question can make the decision. I am not advocating that any one else have that power, but the idea of not seeing it coming and then being trapped in a mind that is not mine for years scares me more than death.
posted by Hactar at 10:05 AM on June 24, 2014 [1 favorite]
I wonder if high-achieving people deal with Alzheimer's differently than others? Like if they can't be their usual brilliant selves they don't want to be at all? I have very mixed feelings about assisted suicide.
Honestly, it's not smart v. dumb or high achieving v. not. I think this may just be the difference between people with analytical/critical minds vs. people who are swayed by myths and superstitions (of which plenty of smart people are)
I was at lots of death beds in the 1980s and 1990s (AIDS, natch). Some of the more intelligent people I knew wished friends a good and pain-free death, knowing it was inevitable, knowing that what they needed was the comfort of knowing their loved ones would be okay.
Others...well, it was as if I was watching a soap opera, "Hang on! You just have to hang on! Don't die on me!" This to a man whose brain was so riddled with PML that he could no longer function.
For me, it's not that if I can't be brilliant I don't want to BE, it's that watching Alzheimer's disease is one of the scariest things I've ever seen. To not know where you are or how you got there or who anyone is, is terrifying. To not know whether you are safe or not (big huge trigger for me), to not know how to get my needs met or even know how to express my needs. No. That will not work for me.
posted by Sophie1 at 10:18 AM on June 24, 2014 [5 favorites]
Honestly, it's not smart v. dumb or high achieving v. not. I think this may just be the difference between people with analytical/critical minds vs. people who are swayed by myths and superstitions (of which plenty of smart people are)
I was at lots of death beds in the 1980s and 1990s (AIDS, natch). Some of the more intelligent people I knew wished friends a good and pain-free death, knowing it was inevitable, knowing that what they needed was the comfort of knowing their loved ones would be okay.
Others...well, it was as if I was watching a soap opera, "Hang on! You just have to hang on! Don't die on me!" This to a man whose brain was so riddled with PML that he could no longer function.
For me, it's not that if I can't be brilliant I don't want to BE, it's that watching Alzheimer's disease is one of the scariest things I've ever seen. To not know where you are or how you got there or who anyone is, is terrifying. To not know whether you are safe or not (big huge trigger for me), to not know how to get my needs met or even know how to express my needs. No. That will not work for me.
posted by Sophie1 at 10:18 AM on June 24, 2014 [5 favorites]
For the record, mareli, I have known people who didn't euthanize pets when they should have; the pets were in pain, not functioning, and had no quality of life to speak of, but the owner couldn't bear to let them go and selfishly refused to do what was right.
There is a line that gets crossed; I think the interview with the daughter was telling. At first, she was angry; she didn't want to let her mother go. But by the end, she respected her mother's choice and understood why she made it, and had the right to make it.
And there are bad families that would pressure an ailing or aging person to take that step, too. And that is frightening and we should be very very alert to it, as part of preventing abuse of the disabled and elderly.
But people who want to go, are ready to go, have very solid reasons for wanting to go (like not being trapped in a decaying consciousness full of fear, or fully aware but in a body that is increasingly immobile and doomed, as with ALS) should absolutely be allowed to do so.
Even then, it's not black and white; how do you know when it's time? That there are not enough good days left to keep waiting, or that if you keep waiting you'll lose the ability to do it? That would be very hard.
posted by emjaybee at 10:20 AM on June 24, 2014 [7 favorites]
There is a line that gets crossed; I think the interview with the daughter was telling. At first, she was angry; she didn't want to let her mother go. But by the end, she respected her mother's choice and understood why she made it, and had the right to make it.
And there are bad families that would pressure an ailing or aging person to take that step, too. And that is frightening and we should be very very alert to it, as part of preventing abuse of the disabled and elderly.
But people who want to go, are ready to go, have very solid reasons for wanting to go (like not being trapped in a decaying consciousness full of fear, or fully aware but in a body that is increasingly immobile and doomed, as with ALS) should absolutely be allowed to do so.
Even then, it's not black and white; how do you know when it's time? That there are not enough good days left to keep waiting, or that if you keep waiting you'll lose the ability to do it? That would be very hard.
posted by emjaybee at 10:20 AM on June 24, 2014 [7 favorites]
Ack, crying at work.
posted by Theta States at 10:59 AM on June 24, 2014
posted by Theta States at 10:59 AM on June 24, 2014
I did not know that Sandra Bem was the researcher responsible for convincing the Supreme Court to end the practice of separate "men wanted" and "women wanted" classified ads. It's still hard to believe that was a thing that was living memory for some people.
Yup. When I was in college (Minneapolis, early '70s), I had a job taking classified ads over the phone for the city newspaper, and it was definitely still their practice at the time.
Sandra Bem was someone I really admired back in the days when I was studying psych and gender/sexuality issues, so it was a bit of a jolt to click the link and realize this was her. I'm very glad she was able to find a way to end her life peacefully and on her own terms; this is absolutely what I plan for myself if I get Alzheimers or any other terminal/debilitating disease. (And being in my 60s, it's no longer a remote hypothetical issue...)
posted by Kat Allison at 12:24 PM on June 24, 2014
Yup. When I was in college (Minneapolis, early '70s), I had a job taking classified ads over the phone for the city newspaper, and it was definitely still their practice at the time.
Sandra Bem was someone I really admired back in the days when I was studying psych and gender/sexuality issues, so it was a bit of a jolt to click the link and realize this was her. I'm very glad she was able to find a way to end her life peacefully and on her own terms; this is absolutely what I plan for myself if I get Alzheimers or any other terminal/debilitating disease. (And being in my 60s, it's no longer a remote hypothetical issue...)
posted by Kat Allison at 12:24 PM on June 24, 2014
And there are bad families that would pressure an ailing or aging person to take that step, too. And that is frightening and we should be very very alert to it, as part of preventing abuse of the disabled and elderly.
I don't think it's fair to characterize this as a problem of "bad families." Even here on Metafilter there are many people who characterize growing old or becoming physically/mentally ill or disabled as axiomatically burdensome on loved ones and on the medical system (aka the rest of society). What person in their right mind would want to be a burden? It's a powerful cultural belief that shapes the way we talk about a lot of different issues.
posted by muddgirl at 12:48 PM on June 24, 2014 [5 favorites]
I don't think it's fair to characterize this as a problem of "bad families." Even here on Metafilter there are many people who characterize growing old or becoming physically/mentally ill or disabled as axiomatically burdensome on loved ones and on the medical system (aka the rest of society). What person in their right mind would want to be a burden? It's a powerful cultural belief that shapes the way we talk about a lot of different issues.
posted by muddgirl at 12:48 PM on June 24, 2014 [5 favorites]
I would want to do the same thing she did: hold out as long as I can and then end it. But of course, the hard part is figuring out when to stop, as it were. (And as we see on every Pratchett thread.) I guess you could pre-plan your suicide while you still had the brain power to do so and then just wait until...whenever, I would just worry about waiting too long and not being able to end it "in time."
Argh. It's cruel that we have to decide shit like this, to end our lives before they become torture.
posted by jenfullmoon at 1:39 PM on June 24, 2014
Argh. It's cruel that we have to decide shit like this, to end our lives before they become torture.
posted by jenfullmoon at 1:39 PM on June 24, 2014
muddgirl, I meant truly bad families that abuse their elderly and/or disabled members and might pressure them to end their lives earlier than necessary for financial gain or even abuse them so much that they become suicidal. I meant that I would want protections/a thorough vetting process so that those sorts of situations were prevented. No one should coerced into this.
I mean, I'd also like to fix our for-profit system so that costs were not the issue at all, because that does cause angst about being a "burden" that doesn't need to be there.
posted by emjaybee at 1:50 PM on June 24, 2014
I mean, I'd also like to fix our for-profit system so that costs were not the issue at all, because that does cause angst about being a "burden" that doesn't need to be there.
posted by emjaybee at 1:50 PM on June 24, 2014
My great-aunt killed herself a couple of months ago. She didn't have dementia, and she was in relatively good health for a 90-year-old, but no 90-year-old is in perfect health. She announced on a Monday that she intended to be dead by the weekend, and then she stopped eating and drinking. She died on Friday night. I'm honestly still not sure how I feel about it. It was the death that she wanted, and I guess I think she was entitled to that. But I also think it was really selfish in the execution: she demanded that there be no funeral, which was hard on the people who loved her, and I don't know how I feel about announcing it in advance that way. Maybe it was better that her kids knew that she wanted to die, rather than trying to figure out what the hell was going on. The whole thing made me more, not less confused about how I feel about suicide.
Having said that, Alzheimers scares the shit out of me, and if it ever comes to that, I can see doing what Dr. Bem did.
posted by ArbitraryAndCapricious at 1:58 PM on June 24, 2014 [2 favorites]
Having said that, Alzheimers scares the shit out of me, and if it ever comes to that, I can see doing what Dr. Bem did.
posted by ArbitraryAndCapricious at 1:58 PM on June 24, 2014 [2 favorites]
Even then, it's not black and white; how do you know when it's time? That there are not enough good days left to keep waiting, or that if you keep waiting you'll lose the ability to do it? That would be very hard.
Yes. Sickness just happens to you. It might be quick or it might linger. It might hold back or it might go hard or then it might hold back again. It might be everything they prepare you for or it might be something no one can anticipate. Nobody sends you an official notice to warn you a last time is approaching, to encourage you to mark the occasion correctly and put one more part of your life firmly behind you. By the time you stop wondering whether you'll ever again be able to work, go on holiday, have sex, eat in a restaurant, drive a car, walk in a park, sit in a cinema, attend a party, wash the dog, get up the stairs, cook dinner, get out of bed... the last time might be long past. And those are things you have a hope of knowing. Who tells you when it's the last time you will make a friend laugh, give comfort to your spouse, teach your children, spoil your cat, learn something fascinating, get a glorious feeling, have a great idea, get lost in a song or a thought, feel lucky to be around someone and make them feel lucky to be around you? Who tells you there's no more point? Don't think people are just holding on to lives that aren't worth living. Sick and dying people wait around in case -- so does everybody.
posted by two or three cars parked under the stars at 2:04 PM on June 24, 2014 [6 favorites]
Yes. Sickness just happens to you. It might be quick or it might linger. It might hold back or it might go hard or then it might hold back again. It might be everything they prepare you for or it might be something no one can anticipate. Nobody sends you an official notice to warn you a last time is approaching, to encourage you to mark the occasion correctly and put one more part of your life firmly behind you. By the time you stop wondering whether you'll ever again be able to work, go on holiday, have sex, eat in a restaurant, drive a car, walk in a park, sit in a cinema, attend a party, wash the dog, get up the stairs, cook dinner, get out of bed... the last time might be long past. And those are things you have a hope of knowing. Who tells you when it's the last time you will make a friend laugh, give comfort to your spouse, teach your children, spoil your cat, learn something fascinating, get a glorious feeling, have a great idea, get lost in a song or a thought, feel lucky to be around someone and make them feel lucky to be around you? Who tells you there's no more point? Don't think people are just holding on to lives that aren't worth living. Sick and dying people wait around in case -- so does everybody.
posted by two or three cars parked under the stars at 2:04 PM on June 24, 2014 [6 favorites]
When you read a book, you expect there to be an end. You expect it to be there, you expect it to be part of the story, and you expect it to be good, even if it's sad.
With life, we seem to be perpetually shocked and horrified that there will be an end, and then it is expected that we fight it off slowly and exhaustingly and horribly until finally we die anyway. Then nobody ever talks about it again.
I would like my life to end like a book. If that involves a hemlock mojito as an improvement on alzheimer's or lung cancer, that sounds like a good ending to me. Maybe people can talk about it afterwards.
posted by emilyw at 4:16 PM on June 24, 2014 [7 favorites]
With life, we seem to be perpetually shocked and horrified that there will be an end, and then it is expected that we fight it off slowly and exhaustingly and horribly until finally we die anyway. Then nobody ever talks about it again.
I would like my life to end like a book. If that involves a hemlock mojito as an improvement on alzheimer's or lung cancer, that sounds like a good ending to me. Maybe people can talk about it afterwards.
posted by emilyw at 4:16 PM on June 24, 2014 [7 favorites]
Death with dignity is the only sane position for a compassionate person to support.
There is one sane and compassionate counterargument: the fear of coercion. If euthanasia was legal, the elderly and infirm might feel pressured to end their lives, due to things like medical expenses or not wanting to be a burden to their family. If we're going to legalize euthanasia, we need to be extravagantly funding palliative care to make sure that people aren't dying to escape miserable living conditions.
Pressuring people to die and obliging people to live are comparably bad.
posted by justsomebodythatyouusedtoknow at 4:21 PM on June 24, 2014 [5 favorites]
There is one sane and compassionate counterargument: the fear of coercion. If euthanasia was legal, the elderly and infirm might feel pressured to end their lives, due to things like medical expenses or not wanting to be a burden to their family. If we're going to legalize euthanasia, we need to be extravagantly funding palliative care to make sure that people aren't dying to escape miserable living conditions.
Pressuring people to die and obliging people to live are comparably bad.
posted by justsomebodythatyouusedtoknow at 4:21 PM on June 24, 2014 [5 favorites]
muddgirl, I meant truly bad families that abuse their elderly and/or disabled members and might pressure them to end their lives earlier than necessary for financial gain or even abuse them so much that they become suicidal. I meant that I would want protections/a thorough vetting process so that those sorts of situations were prevented. No one should coerced into this.
How much a particular individual's life is worth and is a social question, though, that we answer as a society and not only as a single family. Of course some families are abusive and don't value their relatives, and coercion on that micro level needs to be considered, too. But there's also more insidious macro-level coercion that we have to guard against at a public/societal level.
If we as a society agree that it's acceptable for a person with *this much/type of* impairment to die (even if that means she's killing herself), the fear for some is that the message communicated -- likely on a practical and not just abstract level, and which would then be reflected in how resources are allocated and how/what medical care is offered or encouraged -- is that the lives of people with impairments are worthless or even just worth less than those without impairments. That it would be somehow acceptable or maybe even better for society if people died rather than were cared for and lived with impairments. The repercussions of the social devaluing of some people and some lives might also be expanded to threaten (and arguably does already threaten or have a history of threatening, which is why I bring up the racial disparity in DNRs) other "non-normative" groups, including in terms of race or gender or class, etc.
I don't think that people should be forced to suffer endlessly and I think the individual does need to be the final arbiter of whether she lives or dies if that's at all feasible, if nothing else but on the basis of personal rights and liberty. So of course supporting physician assisted suicide or saying "I want to go out on an ice floe" makes sense to me in a lot of ways. But on the other hand, I do think that groups like Not Dead Yet have a strong argument, and it does make me rethink my support for euthanasia somewhat. Because I *don't* personally think that some people or some lives are worth more than others and I don't want to devalue the lives of people living with impairments (which arguably includes me!) or encourage a societal viewpoint that a person is "better off dead than disabled."
Pressuring people to die and obliging people to live are comparably bad.
Yes, exactly, and I'm not sure how to reconcile -- on a practical, societal level -- not encouraging the devaluing the lives people with impairments or those who are non-normative in any way, with allowing people who don't want to live anymore (for any reason) to die with dignity.
posted by rue72 at 4:31 PM on June 24, 2014 [9 favorites]
How much a particular individual's life is worth and is a social question, though, that we answer as a society and not only as a single family. Of course some families are abusive and don't value their relatives, and coercion on that micro level needs to be considered, too. But there's also more insidious macro-level coercion that we have to guard against at a public/societal level.
If we as a society agree that it's acceptable for a person with *this much/type of* impairment to die (even if that means she's killing herself), the fear for some is that the message communicated -- likely on a practical and not just abstract level, and which would then be reflected in how resources are allocated and how/what medical care is offered or encouraged -- is that the lives of people with impairments are worthless or even just worth less than those without impairments. That it would be somehow acceptable or maybe even better for society if people died rather than were cared for and lived with impairments. The repercussions of the social devaluing of some people and some lives might also be expanded to threaten (and arguably does already threaten or have a history of threatening, which is why I bring up the racial disparity in DNRs) other "non-normative" groups, including in terms of race or gender or class, etc.
I don't think that people should be forced to suffer endlessly and I think the individual does need to be the final arbiter of whether she lives or dies if that's at all feasible, if nothing else but on the basis of personal rights and liberty. So of course supporting physician assisted suicide or saying "I want to go out on an ice floe" makes sense to me in a lot of ways. But on the other hand, I do think that groups like Not Dead Yet have a strong argument, and it does make me rethink my support for euthanasia somewhat. Because I *don't* personally think that some people or some lives are worth more than others and I don't want to devalue the lives of people living with impairments (which arguably includes me!) or encourage a societal viewpoint that a person is "better off dead than disabled."
Pressuring people to die and obliging people to live are comparably bad.
Yes, exactly, and I'm not sure how to reconcile -- on a practical, societal level -- not encouraging the devaluing the lives people with impairments or those who are non-normative in any way, with allowing people who don't want to live anymore (for any reason) to die with dignity.
posted by rue72 at 4:31 PM on June 24, 2014 [9 favorites]
kozad, she used pentobarbital, not phenobarbital, the former of which is a schedule II drug according to Wikipedia. Which makes it a bit more surprising she could get it. Just a bit, though. No one said she acquired it legally.
posted by IndigoRain at 9:48 PM on June 24, 2014
posted by IndigoRain at 9:48 PM on June 24, 2014
In the late 80s I was briefly a Psych major as an undergrad at Cornell, and had both Bems during that period. The obituary, not surprisingly, smooths out alot of fascinating complexity in how both Sandra and Daryl lived their lives in terms of gender and sex roles. 18-yr-old me was frequently reduced to just thinking "Whoa...." (I was more Keanu-like than I like to admit), and older-than-18-yr-old me is amazed in retrospect at how they prefigured the discourse of the past 2 decades. And impressed at how Sandra Bem chose to close the book.
posted by Vcholerae at 12:53 AM on June 25, 2014
posted by Vcholerae at 12:53 AM on June 25, 2014
My mother had a plan like this in place, unfortunately her dementia overcame her before she was able to enact it.
She knew what was in store but she did not want to abandon my father.
I moved in with my parents in the summer of 2008 to help take care of my father who had suffered dementia since 2005.
My mother's dementia presented with paranoia: my friends from the CIA created a replica of my parents house and kidnapped her and my dad. They could not escape because they would get lost in the tunnels in our back yard. I had a plan to steal all of their money.
For three years my sisters were convinced that my mother was simply exhausted and palmed the tales off to 'family dynamics'. Even after I got my mother to a doctor, it took another six months before my sisters acknowledged my mother's condition. One sister noticed my mother wasn't bathing, changing her clothes, etc. The police were called regularly until I removed the telephone from my parents room.
In August of 2011 I finally got some assistance from caregivers. At the end of June 2013, my sister acknowledged even with the caregiver, taking care of my parents was way beyond my capabilities.
The instant I see the last moment approaching I'm going to make my exit quietly.
posted by Pudhoho at 5:51 AM on June 25, 2014
She knew what was in store but she did not want to abandon my father.
I moved in with my parents in the summer of 2008 to help take care of my father who had suffered dementia since 2005.
My mother's dementia presented with paranoia: my friends from the CIA created a replica of my parents house and kidnapped her and my dad. They could not escape because they would get lost in the tunnels in our back yard. I had a plan to steal all of their money.
For three years my sisters were convinced that my mother was simply exhausted and palmed the tales off to 'family dynamics'. Even after I got my mother to a doctor, it took another six months before my sisters acknowledged my mother's condition. One sister noticed my mother wasn't bathing, changing her clothes, etc. The police were called regularly until I removed the telephone from my parents room.
In August of 2011 I finally got some assistance from caregivers. At the end of June 2013, my sister acknowledged even with the caregiver, taking care of my parents was way beyond my capabilities.
The instant I see the last moment approaching I'm going to make my exit quietly.
posted by Pudhoho at 5:51 AM on June 25, 2014
There is one sane and compassionate counterargument: the fear of coercion. If euthanasia was legal, the elderly and infirm might feel pressured to end their lives, due to things like medical expenses or not wanting to be a burden to their family. If we're going to legalize euthanasia, we need to be extravagantly funding palliative care to make sure that people aren't dying to escape miserable living conditions.
I'm 100% on your side regarding hospice and palliative care. But bear in mind I'm coming from a country where virtually all medical expenses are free. Stuff like crutches, doctors' notes, that sort of thing aren't. Prescriptions usually aren't covered except under private insurance, being on disability, or in Ontario at least if your medication expenses are more than 4% of your income and your income is under a certain threshold..
So 'being a burden on the family' is less of a concern up here, unless the problem is that your grandparent can't care for themselves and there are no geriatric beds available in hospitals for those requiring more acute care (a not-infrequent problem), and you can't afford private residential geriatric care for someone who's still relatively independent but can't manage most day to day tasks (ditto).
I guess maybe this is where that whole 'living will' thing should come into play. You set out (and get notarized or whatever) the conditions under which you want to be No Heroic Measures, DNR, or I Would Like To End My Life With Dignity Now. In Canada, at least, that information could very easily be registered with your health card from whichever province or territory (same as we do with organ donation; it's shown right there on your card).
Maybe filling out such a thing--even if it's to say Always Do What You Can--should be mandatory in highschools or something. I dunno, and something you can change only with your GP (then again, not everyone has one of those). I get that there can be attempts at pressure, but the Swiss (unsurprisingly) seem to have largely gotten past that issue, afaik.
posted by feckless fecal fear mongering at 12:35 PM on June 26, 2014
I'm 100% on your side regarding hospice and palliative care. But bear in mind I'm coming from a country where virtually all medical expenses are free. Stuff like crutches, doctors' notes, that sort of thing aren't. Prescriptions usually aren't covered except under private insurance, being on disability, or in Ontario at least if your medication expenses are more than 4% of your income and your income is under a certain threshold..
So 'being a burden on the family' is less of a concern up here, unless the problem is that your grandparent can't care for themselves and there are no geriatric beds available in hospitals for those requiring more acute care (a not-infrequent problem), and you can't afford private residential geriatric care for someone who's still relatively independent but can't manage most day to day tasks (ditto).
I guess maybe this is where that whole 'living will' thing should come into play. You set out (and get notarized or whatever) the conditions under which you want to be No Heroic Measures, DNR, or I Would Like To End My Life With Dignity Now. In Canada, at least, that information could very easily be registered with your health card from whichever province or territory (same as we do with organ donation; it's shown right there on your card).
Maybe filling out such a thing--even if it's to say Always Do What You Can--should be mandatory in highschools or something. I dunno, and something you can change only with your GP (then again, not everyone has one of those). I get that there can be attempts at pressure, but the Swiss (unsurprisingly) seem to have largely gotten past that issue, afaik.
posted by feckless fecal fear mongering at 12:35 PM on June 26, 2014
.
Bem and Bem's pamphlet, Training the Woman to Know Her Place: The Power of a Nonconscious Ideology explains how misogynist thoughts colonize women's brains. Discussing it in my CR group changed my life. [Tragically out of print.]
I have a non-progressive* disability, and I generally agree with Not Dead Yet. I believe assigning both life and death decisions to doctors is fundamentally risky. As is common when living with disability, I've encountered too many medical personnel who think my life is simply not worth living (because I have eight good hours a day, use mobility aids, frequent pain). Doctors have a lot of power in this society.
Personally directed suicide doesn't need a doctor: it needs a well-informed civilian with access to the right tools. If we must have a certified person initiate death, give the job to dentists.
*not this one, at least.
posted by Jesse the K at 1:05 PM on June 26, 2014 [1 favorite]
Bem and Bem's pamphlet, Training the Woman to Know Her Place: The Power of a Nonconscious Ideology explains how misogynist thoughts colonize women's brains. Discussing it in my CR group changed my life. [Tragically out of print.]
I have a non-progressive* disability, and I generally agree with Not Dead Yet. I believe assigning both life and death decisions to doctors is fundamentally risky. As is common when living with disability, I've encountered too many medical personnel who think my life is simply not worth living (because I have eight good hours a day, use mobility aids, frequent pain). Doctors have a lot of power in this society.
Personally directed suicide doesn't need a doctor: it needs a well-informed civilian with access to the right tools. If we must have a certified person initiate death, give the job to dentists.
*not this one, at least.
posted by Jesse the K at 1:05 PM on June 26, 2014 [1 favorite]
Dementia is an issue in my family. I think it was when my paternal grandmother started developing Alzheimer's (and later died from it) that my father started researching assisted suicide, including IIRC corresponding with Derek Humphry of the Hemlock Society. Dad's conclusion, when we last discussed it some years ago, was that the best (most easily available, least traumatic) method would be nitrogen asphyxiation.
(Apparently it's being considered as a replacement for lethal injection. I'm not sure how I feel about that.)
posted by Lexica at 7:19 PM on June 26, 2014
(Apparently it's being considered as a replacement for lethal injection. I'm not sure how I feel about that.)
posted by Lexica at 7:19 PM on June 26, 2014
Here's one way to feel about it: they're continuing the barbaric practice of killing people, but at least they're looking at doing so without essentially torturing them to death.
posted by feckless fecal fear mongering at 6:16 AM on June 27, 2014
posted by feckless fecal fear mongering at 6:16 AM on June 27, 2014
Yeah. It's not as though seeing the current horror-show has caused people to wake up and realize the inhumanity of it, unfortunately. If my government is going to continue doing this kind of thing, better to do it as non-sadistically as possible, I guess.
posted by Lexica at 6:20 PM on June 27, 2014
posted by Lexica at 6:20 PM on June 27, 2014
.
posted by Brian Puccio at 4:10 PM on June 29, 2014
posted by Brian Puccio at 4:10 PM on June 29, 2014
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