I was talking about this with a woman at our Meeting who is a doctor. My question to her was "what can I do to be sure I'm one of those happy senile people, and not one of those angry and scared ones." I assumed the answer was "nothing." But she said that the environment you are in is crucial. It isn't just a matter of one part of your brain dying or living. If you are in a comfortable environment, you will find your mental decline comfortable.
If you want to test what will happen, take a fuckload of drugs (doesn't really matter which, but hallucinogens or dissociatives are probably good) and see if you're happy or scared and anxious.
I've only read half the linked article so far, but my grandfather's case of Alzheimer's sounds more like the article than it sounds like your grandfather's case. I think he was fairly depressed about it while he was still aware, and there were several years when he wasn't aware at all before he died.
I don't remember too much about my grandfather, but my dad took care of most of the estate issues and shopping for nursing homes, and I do remember that it was hard for him. He used to talk about how when his mind started to go he planned to take a bottle of liquor up the hill near our house on a cold winter night and drink himself to death. I don't know if he was ever serious about the details in the first place, and even if he was serious at the time I think we'd all prefer a cleaner method when/if the time comes, but still, you get the idea - I couldn't blame someone for not wanting to deal with it.
2: I get scared and anxious, which is why I don't take those drugs anymore.
I'm not sure that is a good test, though. Alzheimer's brings all sorts of big physical changes to the brain that don't happen to college students who take questionable substances at dorm parties.
Alzheimer's brings all sorts of big physical changes to the brain that don't happen permanently to college students who take questionable substances at dorm parties
I mean, it's not an exact match, obviously. Acid (for instance) is holistic in its effects in a way that Alzheimers isn't particularly. But you should definitely try it and report back.
The key is to take enough of whatever it is that you can't remember that you'll ever be normal again. Then have somebody videotape you for reference. Maybe acid and ketamine would be a good choice?
I'm sure somebody has done this exercise, but it's darned hard to google.
Based on nothing more than my experiences at my grandmother's Alzheimer's facility and one other facility, I'd say your grandfather's experience is probably pretty rare. The patients were frustrated, lots of yelling, visible pain, etc. Not all the time constantly, but still there. And everyone was on some kind of anxiety reducing drug to keep them calm. I think the care facilities can manage to keep people in a state where they aren't in active rages all the time, but it's a pretty far remove from "happy" or "loopy" or "acid trip."
You've never seen somebody in an active rage on an acid trip?
Chrissakes, people, I'm not talking about taking two tabs, here. I'm talking full-on ego death, loss of reality, naked screaming levels. And then you cut it with the ketamine, see, to add the dissociative aspect. Arguably that wouldn't quite capture the loss of language and the immobility and so on. Maybe drink half a fifth, too?
to take a bottle of liquor up the hill near our house on a cold winter night and drink himself to death.
This is pretty difficult to do without help from something else like opioids. We had some guy off himself in front of a bunch of other people last week with a 9mm. Shot himself in the chest three times. At least everyone will remember his persistence.
1
... But she said that the environment you are in is crucial. ...
This sounds like the kind of lousy advice which makes caretakers feel guilty for no good reason if things don't go well.
Anyhow I was mostly riffing on the fact that recreational drugs (probably?) work by inducing transient hypofrontality, which is often a symptom of later-stage alzheimers (although presumably more of a factor with frontotemporal dementia, just, like, because of the name). But I suspect that one's ability to manage highly altered states of consciousness with sanguinity would be at least mildly predictive of one's ability to handle advanced dementia with the same, given that the latter almost certainly includes the former. But anyhow, you guys should try it and report back.
The article linked in the OP is very good. At the least, it's worth having a conversation about why we're keeping alive (for a few years) millions of people who are so crippled by Alzheimers or other dementias that they've lost their personalities entirely.
10: did he donate his brain to science? Because gunshot-to-the-chest is quite the done thing in that situation.
10
This is pretty difficult to do without help from something else ...
Is that really true? I thought it was fairly common for drunks to freeze to death by accident. Or is that just in Russia?
Aha! Maybe Scopolamine is what we're looking for.
Hm, or Datura. That's pretty easy to score.
13
The article linked in the OP is very good. At the least, it's worth having a conversation about why we're keeping alive (for a few years) millions of people who are so crippled by Alzheimers or other dementias that they've lost their personalities entirely.
Because no one has the nerve to advocate putting them down. And that is probably not a popular position anyway. See the "death panels" furor.
did he donate his brain to science? Because gunshot-to-the-chest is quite the done thing in that situation.
We're not even sure of his real name. Fairly young guy, did it in front of his ex gf and a bunch of her relatives. What they thought his name was didn't match what was on the possibly fake Mexican ID in his wallet. One of those "break up with me? I'll show you..." situations.
Is that really true? I thought it was fairly common for drunks to freeze to death by accident. Or is that just in Russia?
Yeah, he might pull it off with real exposure to full on winter temps.
19
... One of those "break up with me? I'll show you..." situations.
Well at least he killed himself instead of them.
See? Shearer'll be happy when he has dementia.
Also I now have "always look on the bright side" stuck in my head.
11 gets it exactly right. These things are way better understood than they were even 10-15 years ago, but still not understood all that well. Nice, pat advice like that will only be right by chance.
This sounds like the kind of lousy advice which makes caretakers feel guilty for no good reason if things don't go well.
It's very good advice if there are concrete things you can do to make the environment more comfortable.
... But she said that the environment you are in is crucial. ...
...This sounds like the kind of lousy advice which makes caretakers feel guilty for no good reason if things don't go well....
Alzheimer's patients have a very hard time with change, because they're not forming new memories, so familiar, comfortable settings are much, much better for them emotionally than strange places. So, of course, we mostly move them into new environments as soon as they start to decline, and then they decline much faster. Imagine if every day you woke up and had no idea where you were or what had happened to bring you there. You'd be scared and frustrated and angry, too, even without the loss of other functions, like the ability to communicate smoothly. When I started graduate school for mental health counseling, I thought that I wanted to work with Alzheimer's patients. Then I did a research paper on it and discovered that there is no research-based therapeutic intervention that does any good whatsoever. However, letting them stay in familiar territory--ideally a place where they've lived for many years--does dramatically improve quality of life. I think the saddest thing that I found out from that paper is that the most commonly used technique, basically trying to re-orient them to reality, is actually destructive in terms of happiness/unhappiness. It seems so obvious when you think about it -- what possible good does it do the person with dementia to be telling them that they're wrong all the time? And yet, that's what people do.
I just want to know whether time spent now meditating and accepting the universe and stuff like that will help me later when my brain starts to get all gunked up with those plaque things.
By the Tweety test, dementia will be super fun for me but I'll have a nasty headache when it's all over.
And it will be increasingly hard to find people to have dementia with, as I get older.
25: Whether or not people in severe mental decline need comfortable surroundings is not much of a head-scratcher, though. It's true whether or not it helps them be happier. The point of contention is the assertion is that the misery is mostly environmentally determined. I'm pretty sure that's false, and not only false, but would lead to the unnecessary guilt James mentions in 11.
It's heebie-heebie, the demented version of heebie-geebie!
Three of my grandparents have had one form of dementia or other (the fourth, surviving one is a chain-smoking Republican), and it seems like a pretty terrible way to go to me. One of my grandfathers generally seemed relatively happy, even while not really knowing who anyone around him was, but his slow decline over years took a pretty terrible toll on my grandmother (and, to a lesser extent, my mom). My grandfather and other grandmother just seemed to be terrified and confused a lot of the time toward the end. My dad likes to joke, a little too often, that if this starts to happen to him, he's just going to drive to a mountaintop in the Rockies and die of exposure. Sounds more protracted than the drinking-oneself-to-death method.
29: And increasingly hard to find dementia, IME.
My grandfather lived at home and continued to have large parts of his familiar routine intact, which accords with help-chalk and wynde's comments. And they were wealthy enough to afford in-home care, so the imposition on family caretakers was minimized.
The article linked in the OP would be immensely improved if rewritten to excise or at least reduce the self-parodic Boomer selfishness on display, but I suppose there's no market these days for anything not written on the theme of "How does this affect me, because I am just like you, gentle reader?"
The point of contention is the assertion is that the misery is mostly environmentally determined.
To be fair to my friend, I had asked what I can do to be happier in decline, not who should we blame if someone is unhappy in decline. In that context, her answer was natural and hopeful. If she had said, "there's nothing you can do; it's all a lottery," I'd have been bummed out.
Move the word "other" to the appropriate place in 32. My grandmother who had dementia did seem a lot happier while she was still in her own house, but she also kept doing dangerous things if no one was around to watch her, so eventually she had to be moved to a nursing home. After that her decline was really fast.
36: Ultimately, I'm guessing the answer is neither "there's nothing you can do" nor "there's everything you can do."
I suppose doctors can't give a complex summary of the peer-reviewed literature for all their patients...
I'm talking full-on ego death, loss of reality, naked screaming levels. And then you cut it with the ketamine, see, to add the dissociative aspect. ...
cannibalism, face eating, etc..
26
... However, letting them stay in familiar territory--ideally a place where they've lived for many years--does dramatically improve quality of life. ...
This is all very well if you can afford around the clock professional caretakers. Otherwise you risk having them burn the place down, wander off, beat on you etc. And constantly worrying about someone won't do much for your quality of life.
11 gets it exactly right. These things are way better understood than they were even 10-15 years ago, but still not understood all that well. Nice, pat advice like that will only be right by chance.
Probably obvious from what I just posted, but no. It might have been better if the doctor had defined comfortable as familiar, but there's plenty of research that indicates that people with dementia do better -- ie, fewer angry outbursts, less belligerence, less crying, less of the 5PM (twilight hour) despair -- when they are in a setting they recognize. New places stay strange and unfamiliar to them and increase their unhappiness. They have sky-high levels of depression, anyway, but their environment can make it worse. I apparently deleted the paper I wrote from this computer or I'd provide citations.
26 may be (likely is) true but there are enormous practical reasons why it is very difficult to keep Alzheimers patients in a familiar environment -- almost no one can afford 24 hour home care in a manner suitable for an Alzheimer's patient.
My dear old grandmother was just like your grandfather, Heebie. She would sing silly songs, "Dippy dippy doo, dippy doo, dippy doo" and often repeat "To be or not to be" and then laugh. The staff found her amusing. In her final year or so that bit of language stopped but she kept her cheerful disposition till the end. She also had the constitution of an ox and lived on like that for about a decade which was well into her late 90s.
41 - do people with Alzheimer's respond to antidepressants?
25: But Shearer's right that it's inhumane if not accompanied by concrete advice about making the environment comfortable and some way to distinguish between a patient who's unhappy environmentally and one who's intractably unhappy, so that you're not blaming the caregivers for failing to do the impossible.
My grandmother was demented for a long time -- five years? More? I wasn't around for most of it, in college and the Peace Corps. She was in what was supposed to be a very good nursing home first, and then moved to a better home later, but she was terribly unhappy for all of it.
41: ...or I'd provide citations.
That really won't be necessary; I certainly didn't mean to imply that all research on these subjects (including my own!) is useless and has produced no reliable results, only that the doctor's advice as quoted should not be taken as a rule on how these things work out.
And Shearer is again right in 40, along with Halford in 42. Maintaining a severely demented patient in their home means 24 hour care from family or professionals. That's something only the very wealthiest can afford without hurting themselves terribly, unless there are very unusual and lucky circumstances.
44: from what I understand Alzheimers and depression co-occur quite frequently, and in fact severe depression can mimic the symptoms of Alzheimers, so I'd think anti-depressants could be quite helpful, at least in some circumstances (and insofar as they work better than placebo at all, which is a whole other question).
44 -- I know that the advice we got was that mood stabilizers (I'm not sure if they were strictly antidepressants or not) do some good and were routinely prescribed. But "some good" is relative.
The woman I was talking to may have even said "familiar." This was, like, a two minute conversation. Sarah Wynde is the authority here.
If it is significantly better to stay at home, might it be worth the risk of falling and breaking a hip while no one else is in the house to have the peace that comes with familiar surroundings?
50: but how do you judge the window where the danger is breaking a hip and not starting a fire?
46: Yeah, comfortable is a very vague word. A nursing home with great views, kind staff, pleasant furnishings, terrific food could seem comfortable to you, but to the person with dementia, it still might seem like hell. The home my grandmother was in really was a nice place -- way better than most -- but she went from 90% functional to 90% not in just a few months, and then "dwindled" as that article called it for years. And, of course, its ideal world to say let the person with dementia stay home as long as possible. But just because it's hard to do doesn't refute the evidence that it's the most successful option for those who can do it.
My ex-FIL used death with dignity in Washington state last September. I wasn't there for it, but his death sounded so incredibly pleasant compared to the other deaths I've seen.
Mostly they were giving my grandmother benzodiazepines, I think because she was scared more than depressed, and maybe also because she was having seizures. They seemed to help make her calm, but I'm not sure they made her happier.
I don't mean to be all gloom and doom here, but it's not just the risk of falling and breaking a hip. You can do things like wander off into traffic, burn the place down, go into an uncontrollable rage, etc. These people need constant care and incredibly strict limits -- if you go inside an Alzheimer's facility the kinds of security and gates and that sort of thing are remarkable. You aren't going to be OK just staying in your home, feeling a bit loopy and out of it, and getting by -- you need full time care from either a family member or a paid professional. 24 hour paid care of a late-stage Alzheimer's patient is a breathtakingly enormous expense.
Should probably strike "late stage" there. The need for 24 hour care, and the enormous expense, starts earlier.
44: I believe these days people with Alzheimer's are prescribed antidepressants as a matter of course. The research isn't there to back it up, however. (Or wasn't a year ago, when I wrote my paper.) In personal experience, my mom was on anti-depressants, anti-psychotics, and about 8 other things. It did not seem to make any appreciable difference for her. Losing her mind made her miserable. I think it would have been only a matter of time before she found a different way out, but fate lent her a hand. (She died of pancreatic cancer last summer, so got to skip the dwindling stage.)
You can do things like wander off into traffic, burn the place down, go into an uncontrollable rage, etc.
I can do those things right now.
54: It's also more basic stuff like being sure they eat, shower, etc. and managing all the basics of running a house, paying the bills, doing laundry, and so on.
Late-stage, though, for Alzheimer's patients, is when they're no longer walking, talking, etc. It can last for years. My grandmother lived at least three years past her ability to do pretty much anything. That's long past the burning down the house stage.
Right, but in the late stage you do things like -- in my grandmother's case -- forgetting how to chew. You need 24 hour care, and to do that in the home (absent a martyr relative) you're looking at costs of over $100k/year, almost never covered by insurance.
Losing her mind made her miserable.
This, I think, has not been emphasised enough here. In many cases, there's just not a pleasant place to degenerate into a mockery of your former self. Also, emotion and cognition appear to be intertwined at a pretty fundamental level in the brain, so in many cases it's difficult to affect one without the other.
Scopolamine is one of the primary active alkaloids in Datura and very much in the category of things with which you do not want to fuck. Ever. I recall a story some years back about some young dude in Germany who dosed himself and then cut off his penis and tongue with garden shears.
No, LSD and Ketamine is clearly the way to go here (just ask John Lilly).
My takeaway from this thread is that as I get older, I should decorate wherever I'm living like a nursing home.
30: Right. There's been plenty written about concentration camp survivors reliving that experience while demented. Few nursing homes are that bad.
I am NOT going to live with dementia, drugged up or not. If I get a diagnosis of Alz or the like I'll post the address of my deathcam here and you can watch me do it. The only issue I'll debate is method.
And it's heartbreaking advice, because what it really means is that some family member should give up everything else in their lives to care for the demented patient. My grandmother had lived in a house a few hundred yards from my aunt, so that my aunt could take care of her, for about ten years before she moved into the home, and one of the triggers in her case was that she started making repeated calls to 911. To keep her from having phone access would have meant literally confining her or supervising her without a pause.
My aunt could have done it -- my father could have quit his job and moved in with her and done it. I could have dropped out of college and done it, and so could my sister, and so could any of her other five grandchildren. We didn't keep her in her familiar home because we weren't willing to give up what it would have taken to do it. So her last five years were a nightmare because we were too selfish to give up our lives to take care of her.
I don't really think we made the wrong decision there, but I feel sick when I think about it in those terms.
63: If it comes to that, take a trip around the country and come visit people first. You can't off yourself if you've never been to Fresh Salt.
The only issue I'll debate is method.
Word.
63: I thought you had settled on helium, or are there worries about shortages?
Also, while SW may be right that there's research showing that on average staying in a familiar place is more effective on average for increasing quality of life of Alzheimer's patients, let's be clear that (a) the quality of life is still unspeakably horrible and (b) it's still likely (I think) even if you are staying at home that you will be horribly depressed.
68: Helium is probably the least messy but there's a time lag. So if I post access to the video feed some busybody will call the police and there might be interference.
62: Or move into the nursing home really early. My great-grandmother was in her nursing home for 20 years or more, and she was pretty cheerful throughout her last ten with dementia.
64: I don't really think it means someone should give up their life. Everyone has to make compromises, and, assuming your grandmother was a reasonable person, I don't think she would have wanted you to trade your quality of life for hers. Dementia is heartbreaking, no matter what. If your grandmother had had slightly improved quality of life while everyone else suffered, it would still have been heartbreaking.
I recall that when a relative of mine was bedridden and increasingly weird (I don't know if she was formally diagnosed with Alzheimers) and dying, cared for at home by a relative, the effect on the carer was at least as depressing as her fate was. Possibly more so.
If I move into a cargo container, could they just drop it all on the grounds of the nursing center?
63: I'm 100% with you on that. If I ever get even the tiniest hint of dementia setting in, it will be time to go.
Here would be my preferred list:
1. Explosive vest at board meeting of evil corporation.
2. On the barricades.
3. Overdose of liquid Valium.
4. Carbon monoxide.
5. Drown in a vat of Bacardi.
6. Remington 870 12 ga.
It's a hard decision to make, and thankfully I've not been in a position where I have to make it, but Alex has a point, as does Sarah in 71.last.
I find Alzheimer's and dementia particularly scary prospects because you can't do much to keep it from getting bad save euthanasia. Two of my grandfathers had relatively good deaths by forgoing medical treatment at the right time; the other is still fairly acute in his mid-90s; my parents are also gung-ho about avoiding end-of-life treatment; but that policy doesn't do anything about mental recliner.
Life is hard. Death is hard. Being born is probably pretty hard, too. It's just shit wall-to-wall!
I think the saddest thing that I found out from that paper is that the most commonly used technique, basically trying to re-orient them to reality, is actually destructive in terms of happiness/unhappiness. It seems so obvious when you think about it -- what possible good does it do the person with dementia to be telling them that they're wrong all the time? And yet, that's what people do.
I heard a radio piece the other day about connecting with people with dementia by showing them a picture and asking them to make up stories about it. Not a picture of a person or place they knew, just a picture from a magazine or whatever. It doesn't cause stress for the person with dementia because you're not asking them to try to remember anything but gives the family/caretaker a way to interact with them.
It sounded quite sensible. Sarah, do you know anything about that research?
Here's what I hope someone will do for me if I'm in the situation:
My 70 something neighbor set up a full familial posse to provide 24 hour caretakers for her 90-something aunt. The aunt had been utterly miserable in a brief stay in assisted diving, and is very happy sitting around her own home with her own ancient tv and her own window with a birdfeeder.
All the caretakers are female relatives of several generations, some retired, some homemakers with time during the school day, some junior high and high school girls. social security, a blue collar union pension, a reverse mortgage, and some savings, the aunt's accounts can pay everyone $10/hour and it's easy work. Everyone's pleaesd that they're essentially getting advances on the inheritance, and it all stays in the family. The aunt is happy to watch her own tv and look out her own windows.
Obviously, only works with a very dedicated organizer and a large extended family living close by. Not going to happen for most of us.
70: put the broadcast on a time delay?
1. Explosive vest at board meeting of evil corporation.
2. On the barricades.
3. Overdose of liquid Valium.
4. Carbon monoxide.
5. Drown in a vat of Bacardi.
6. Remington 870 12 ga.
"Wakeboarding, birdstrike."
My 70 something neighbor set up a full familial posse to provide 24 hour caretakers for her 90-something aunt. The aunt had been utterly miserable in a brief stay in assisted diving, and is very happy sitting around her own home with her own ancient tv and her own window with a birdfeeder.
Really anything involving SCUBA gear is probably too much to ask from someone in their 90s, let alone a whole lifestyle change.
Mom is still well enough to be looked after at home by dad. I think she still does a good bit of the house keeping and all the laundry. Fortunately, her personality is about the same as ever. I think big pharma (in the form of an acetylcholinesterase inhibitor) has been a help in holding the line.
assuming your grandmother was a reasonable person, I don't think she would have wanted you to trade your quality of life for hers
I've told my family that if I become incapacitated, they should stick me in a nursing home somewhere and visit me or not as they choose, without feeling guilty about it. I hope they'll take me seriously. (My SIL says the same thing, but she craves social interaction and emotional connection so much now that I doubt I could accept that it would really be ok. Whereas I'm an anti-social misanthrope.)
All the caretakers are female relatives of several generations
This is a coincidence, I am sure.
68: Nitrogen is just as if not more effective. A pony bottle of Nitrogen or Argon from the local welding supply is dirt cheap, and often they rent regulators. If not then buying a regulator is also quite cheap. There's a little trivial plumbing to be done, too. Even the plumbing can be avoided if you just rent a MIG/TIG welder, which is probably the way to go*. The big advantage of this method is that it takes time, long enough to change your mind if you're just having a particularly low day. Shooting yourself takes no time at all, ideal for impulsive suicides. If I ever face a situation where taking matters into my own hands seems the least bad option I'll go the welder route unless I happen to have an explosive vest and a ticket to the board meeting of Goldman Sachs.
*Used just as a source of inert gas, not to weld yourself to death, which would probably suck balls hard.
Also,
Obviously, only works with a very dedicated organizer and a large extended family living close by and a pretty peaceful decline. It's hard to have junior high schoolers or people who themselves are not that young if the person needs intensive physical care, or if s/he is violent, or has to be restrained from leaving the house, etc. In short, while it's great that your neighbor has such a dedicated team of family members, it sounds like she's a relatively easy case.
87.last: AIEE BALL-SUCKING HARD DEATH WELD
My father is only in his seventies (and comes from a very long-lived family) but is frustrated enough with his physical deterioration that he's already saying that he doesn't know how long he'll want to live. The physical stuff is mild as these things go. He has foot trouble that means he can't play tennis anymore and walking is somewhat awkward. He's lost some strength and his balance isn't what he's used to. But he gets around fine, drives, travels, plays golf, fixes stuff, keeps house (with his wife). Still, he's already anticipating the point when the physical losses won't be worth it. And now I'm crying, so I'm going to stop thinking about this and get back to work.
I wonder if there are statistics on the number of Americans who have abandoned or effectively abandoned careers to take care of elderly relatives with dementia or similar ailments. I'd guess that the numbers are in the millions, and that they are overwhelmingly women.
87: I'll have to see about an interactive audio/video link 'cause if I'm in the early stages of dementia I might need you to talk me through the welder set-up and operation.
In theory any oxygen replacement should work the same except for CO2 which is going to be very unpleasant. Helium might be easier in practice though, party stores and plastic bags are everywhere.
I think moving the 870 12ga up Natilo's list would make sense, especially since I have one.
DISCLAIMER: THIS IS FOR LATER, NOT NOW. RIGHT NOW I'M FINE, THANK YOU VERY MUCH.
92: Oh, it already has its own trend articles. They're calling it "The Daughter Track," I believe.
93.last: Worried that a sympathetic local commenter might make it easy on you by putting you out of your misery unexpectedly? I hate when people make mistakes like that.
When my mom's mother started getting sufficiently sick, my dad's mother would harangue my mom on a weekly basis about how she needed to quit her job and become a full-time caretaker. Lots of extended speeches about how in the old days, people took care of their family, and we should all be living in big houses together anyway and Obama something-or-other and those damned feminists and socialism. Pretty nutty, but my mom felt some guilt about this anyway, despite basically spending every weekend doing nothing but caring for her mother, so it hurt. I don't think anyone else in the family agreed, but this pressure for women to spend all their time caring for elderly relatives seems real and pervasive.
96: we have a family friend (male) prone to making speeches about how in old country nobody ever got put in a home. I believe he tried to get his wife to let his mother move in so his wife could take care of her (who was hateful in the best of circumstances). Unsurprisingly, but to her credit, his wife said "oh, hell no".
Your dad's mom probably wanted reassured that if the same thing happened to her, you'd put her on the nice iceberg with some good blubber.
95: Hasn't the "OMG, I hired a hit man to off me and I can't call him off!" been done in movies several times? No, I just want it to be very clear that I don't have any immediate action in mind. I know what I've written, I don't know what people are reading.
I'm with Sir Kraab's father in both age and contemplation, that's all. Given the relatively new abilities of the medical-industrial complex to make death a drawn-out horror, I think it's an important and good thing to consider.
The pressure to do more--limitless amounts more--to care for sick or dying family members can be awful. When my aunt was dying several years ago (a slow cancer, not a dementing illness) my mother stopped working and helped to care for her full-time. She hasn't been able to find full-time work since. I took a chunk out of retirement accounts to pay for some of her care as well, in addition to flying back and forth. Long-term care is a financial disaster for everybody. As annoying as the article in the OP was, planning your own exit is definitely the way to go.
Also, everything Sarah has said here sounds right to me, at least from the last time I looked at this literature.
FWIW, Scotland [but not England]* has free long term care for all.**
* although apparently the difference in provision isn't quite as wide as all that.
** nursing and personal care. There is a means tested element for accommodation and living costs.
101: And to think I recently declined a job opportunity in Edinburgh on the grounds that it would put me too far away from family members who need my help with care. Should have just moved everyone, I suppose.
My parents each had elderly parents to look after. Only 1 case of dementia though (after a general anaesthetic at age 82). Strenuous efforts were made to keep her in her own home for years until it reached the "might burn house down " stage.
My father had a post op brain bleed (=effective stroke) at 67 and my 65 year old mother did the total devotion thing, which she has made us promise not to do for her. He did show remarkable improvement when back in his home of 40 years, as did an aunt of 80 + a year after a stroke. So it might be worth pulling out the stops to get post stroke people home, to the extent it can be done.
I think they do get most post-stroke people home. It isn't a degenerative condition and past a certain point, you can do much of the rehab as an outpatient.
re: 102
Usually there's a residence requirement for these services in Scotland, although I think it's relatively easy to meet in this case [i.e. you have to be assessed as ordinarily resident in Scotland, you can't move there for the purpose of getting the care].
My grandfather was back to normal very quickly after his stroke. I think he had a bit of mild aphasia for a while, and that was it. He was home within a day or two. There's such a wide variance in seriousness that I'd guess what happens next varies widely, too.
I recently met somebody who just took an (academic) job at Edinburgh. What's the chance it was the same job Man Suit turned down? I'm thinking pretty good.
100: The pressure to do more--limitless amounts more--to care for sick or dying family members can be awful.
And often comes, according to a friend who ran an Alz support group early on, from family on the other side of the continent who don't do much of anything. They always have reasons/rationalizations for their not doing and so feel free to hand out tickets on the guilt-trip express. I don't think they ever came up with a good way to handle that except by an offer to quit and let them take over. "Granny will be at your place next week, do you know how to change Depends?".
Not to worry; I not only forget that person's name, I'm not totally sure what department they got hired in, let alone what the job description was.
106: True. If mine had happened a few hours later while I was sleeping I might not have recognized it the next morning for what it was. I'd most likely have chalked up any residual clumsiness to sleeping on that arm and it would have been almost completely gone by that evening.
On the other hand, I wouldn't have stopped smoking so the four days in Cedars getting poked, prodded, propofoled, and penetrated was worth it. Not so much for the seriously ancient buried in tubing on that unit though. The horror....
110: Jeez, dude, lay off the ketamine.
You people don't have nearly detailed enough job rumor websites.
I actually don't know if my field has job rumor websites or not. Probably?
Essear's field apparently gossips more than 3 all-girls Catholic high schools, factorial.
Right. There's been plenty written about concentration camp survivors reliving that experience while demented.
Christ yes. Though only in the earlier stages. Eventually they forget everything, including the bad stuff.
I ran across an article somewhere recently discussing the new phenomenon of academic job rumor sites. My field has had one since 1995.
119: It's that "eventually" that's the problem. It keeps getting longer and longer.
We know, we know, essear. Everyone sends their CVs to arxiv.org before officially applying for the job, the employer sends the job offer to arxiv.org before officially sending it to the applicant, it all makes total sense and it's silly that others don't use it.
122: Hee.
117: If only we could get Kristen Bell voiceovers.
My maternal grandfather died of a stroke at 65. Her mother seemed a bit confused as she got weaker toward the end, but that could have been from the morphine she was getting and she died in her assisted living place.
My Dad's father died of system failure 6 months or a year after colon cancer surgery. I think my Dad's mother was a bit confused but she died in her sleep.
Less than 15 years later, I'm already looking at dealing with this for my parents. My Dad has a ton of problems at not yet 68, and he's been in the hospital twice in the past month for blood infections. It turns out that an injured shoulder made a great place for bacteria colonization. And they did such a bad job planning.
My Mom has got early stages of dementia which frighten her a lot. They ought to have something between assisted living and a nursing home, because my Mom is only 65, and living for 20 or 25 years in a nursing home seems horrible. Being shunted off to a home is her worst fear, but we can't pay for aides, and I doubt that my Dad will live more than 5 years. (Medicaid in MA does have some pretty good programs which might make things bearable while he's alive.) I started tearing up partway through the article.
My Mother would want to be kept alive as long as possible, I think.
There's a book by a former NY Times reporter called A Bittersweet Season: Caring for Our Aging Parents about her mother's last couple of years along with a discussion of policy issues. The Times has a blog about aging now. Her mother ultimately decided to stop eating and drinking. There are, apparently, ways to make you comfortable without quenching your thirst.
It is all so very awful.
Oh, and never mind the finances. If they manage to qualify for affordable assisted living, there's probably only one place that would take her. Most won't take anyone with a psychiatric history.
the new phenomenon of academic job rumor sites
Back when I was on the academic job market, I was amazed at the vehemence with which several faculty members warned me away from these. They brought it up, not me. It was weird.
My dad likes to joke, a little too often, that if this starts to happen to him, he's just going to drive to a mountaintop in the Rockies and die of exposure.
I am all but certain that both of my (divorced) parents have concrete plans for this. My Dad's also involve a mountain setting. And like Sir Kraab, I'm crying at the thought. I weep, but they are probably right. I hope either gives us notice.
126: Yeah, one article I saw was this one advising people on the market to avoid learning any unofficial news about what's happening in searches. Maybe that works in large enough fields; for me, the names showing up on the rumor mill in my field are all somewhere on a continuum between friendly acquaintances I see once or twice a year and close personal friends, so it's hard to imagine how I could avoid hearing about what's going on.
The one in my field doesn't even have names, it's just people reporting on things, and I can't see what harm it could possibly do. Okay, that job I applied to has seven people saying they got invited for MLA interviews three days ago, and I haven't heard from them, so I can probably count that one as out for me. One of the professors was talking about how you could get a call! a week later! to interview for that same job! Which, okay? Yay? It's not like I sent the chair of the department a death threat in the mean time or something.
The retired priest at my church had two things he told me. He told his husband who is about 5 years younger, that if they get divorced he has to let him live in the spare bedroom, because he'll never be able to afford his own place. He also asked his husband, once his mind starts to go, to reel him out onto one of the runways at Logan and leave him there.
He told me a story about visiting a woman in some home, and he asked her if they should start with prayer, and she looked at him intently and said, "Yes, but don't you dare pray for my health."
to reel him out onto one of the runways at Logan and leave him there
Because it is his lifelong dream to shut down an airport for a good couple of hours?
...to reel him out onto one of the runways at Logan and leave him there.
If he has to die, at least he'll know he fucked-up air travel for thousands.
Shut down and airport and pwn everybody.
I didn't really prod him on that one. I think he said something about continuing to say it to see whether his husband would say that he wouldn't do that. Or maybe he just wanted to be pushed off into the water. It seemed strange to me.
I can't figure if the point is just to get arrested for the free nursing care in prison, to get shot by TSA, or to get smashed by plane.
He wants to huff the jet fuel fumes.
Your dad's mom probably wanted reassured that if the same thing happened to her, you'd put her on the nice iceberg with some good blubber.
I tried some blubber recently. It's surprisingly good fried. Raw, not so much.
35: reduce the self-parodic Boomer selfishness on display,
100: As annoying as the article in the OP was,
I must say that this article did not strike me as being annoying or overly "me-ish*". But I'm open to considering that given my time of life, and current and recent past immersion in similar family issues that I resemble that attitude.
*Or not noticeably more than any "tale from my life" article ever is. Nor was I overly struck by it in the "Daddy Issues" Atlantic article that apo (I think) linked some time ago.
There is no Fry Daddy on the ice.
139: That's why you need to plan ahead for these things. Do a living will or something.
138: Yeah. What other perspective would a child of an dwindling parent use? Just like the article says, the depth of the problem only registers when it is one's own parent. And if you are going to make the reasonable/grim/callous argument that death shouldn't have been prevented earlier, you can only do that with your own parent. You can't argue for someone else's parent's death.
You can't argue for someone else's parent's death.
And that's why I'm not allowed to do in the Kingergarten room anymore.
You were trying to do in the Kingergarten? And wtf is a Kingergarten anyway?
Something that ought to be done in, I bet.
I was so concerned about whether the ending was "garten" or "garden" that I forgot about the rest of the word.
Thinking about it, I realize that so far there has been no lingering dementia issues that I am aware of in either the family cases I've been closely involved with, nor in grandparents, aunts or uncles of either me or my wife. Other semi-intractable issues certainly--including mental ones--but always a person there with at least enough self-awareness to engage in decision-making. Thank God, and i certainly do not wish to be the first.
One aspect of the article which is mentioned (and also implicit in its attitude) that struck me when we recently went through it with my father-in-law is the abrupt binary switch of the "official" medical response, from doing everything medically possible (within the resources of the insurance/gov't program/individual/family) to save them and help them get up and around again to helping them shuffle off. No ambivalence (which is where family and individual often seem to be), and although that is almost certainly proper (as well as necessary from a legal point of view), it can be jarring.
138: I want to retract my claim that the article was annoying. The sibling in Maui was extremely annoying. The writer did a good job of conveying the panicky, trapped-in-hell feeling of being a caregiver in these situations, where the only form of really humane care would be to stop prolonging the person's life (or something a little more active than that).
As if this discussion weren't making me feel old enough already, I just noted that it has been twice as long since the release of Platoon (Oliver Stone, 1986), as it was from that film's release to the end of the Vietnam War (direct US involvement). Which helps me understand why the controversy around the film was such a big deal. At the time, I figured people were just being stupid, since it had all happened such a long time ago. I'm not sure that anyone else in 6th grade had an opinion on that subject.
Also, remember when Johnny Depp was in good movies?
The first Pirates of the Caribbean wasn't that long ago, Nat.
Also, remember when Johnny Depp was in good movies?
Johnny Depp's participation in this episode* of This American Life convinced me that he is at least somewhat responsive to the possibilities afforded by his celebrity.
* I see that the episode is from 2008 which counts as current at my rate of consumption of popular culture, but might not to somebody else. The episode is also probably on topic as it concerns care giving.
I dunno, I mean, I just feel like he never should have done that first sequel. (PotC2) It might have been a big payday, but what the hell does he need more money for? Rum Diaries was kind of a snooze-fest and these recent Burton ones are just rehashing the same Goofy Depp character from Sleepy Hollow. Christ, he'd have more artistic legitimacy if he went back to TV for 21 Jumpstreet: The Next Generation or something.
What 147.last describes is probably not that different from many kinds of threshold decisions involving other people where you mentally and emotionally sneak up on it, but then when you go "public" everybody's behavior changes significantly even though *you* are relatively close to your thinking of the day before. Letting your workplace know that you are leaving is probably a good example.
Letting the Rev. Jones know you won't be moving to Guyana is another example.
Johnny Depp movies, 2000-2012:
Set in a fantastical universe:
From Hell
POTC:TCOTBP
Once Upon A Time In Mexico
Charlie and the Chocolate Factory
The Corpse Bride
POTC:DMC
POTC:AWE
Sweeney Todd
Imaginarium of Dr. Parnassus
Alice In Wonderland
Rango
POTC:OST
Dark Shadows
Set in mostly the real universe:
The Man Who Cried
Before Night Falls
Chocolat
Blow
Secret Window
Finding Neverland
The Libertine
Public Enemies
The Tourist
The Rum Diary
Set in real universe, playing fictional character:
The Man Who Cried
Chocolat
Secret Window
The Tourist
I'm 99 percent sure that my parents have their plans made and their end-of-life care will be much easier for them, my sister and I than my grandparents' care was on everyone. As for myself, I don't have any definite plans or anything in writing, but there's plenty of time. (Now there's tempting fate...)
I'm also not too worried because I'm kind of assuming that by the time any of this matters to me there will be saner policies about euthanasia in this country. Death with dignity. I won't need to attempt suicide by exposure or work out some Rube Goldbergian deathtrap because by the time I or my loved ones of my parents' generation need it it'll be possible to end it all by asking a doctor for a shot, and without using too much doublespeak. Maybe saying even that is tempting fate as well, and of course that's a selfish view; it already matters to plenty of people. We should have had such policies years ago.
135: I guessed the last one was most likely, and there is a certain appear to dying in a spectacular way (I'll go skydiving, and then not open the parachute one time!), but there must be a more effective way than that.
138: Part of it is that I am (not personally, but just from his media output) familiar with the author, who rivals James Atlas* in his astonishingly shameless careerism, logrolling, envy and media-fad-chasing.
* I can't be the only one who let his New Yorker subscription lapse several years ago after two or three of Atlas' "Why am I not as rich as...?" essays were published.
Death with dignity.
That phrase has always made me want to market a wine cooler called "Dignity."
156: Why did you remind me of From Hell? I had almost completely forgotten its existence and the dreary 122 minutes I spent wishing I was not watching it.
Heather Graham is cute in From Hell.
re: 156
Wow. That's a pretty rank list. I can see one film I enjoyed, and maybe three that were passably entertaining.
re: 161
Bad accent. As is Depp's in From Hell although his British accent(s) in other films have been somewhat less bad.
Wow indeed. I've only bothered to see two of those, and I used to consider myself a pretty big Johnny Depp fan.
163: Almost all movie accents are pretty bad, aren't they?
159: Death with dignity.
That phrase always reminds *me* of this passage from Death on the Installment Plan:
"The most exquisite deaths, remember that, Ferdinand, are those that attack us in our most sensitive tissues....." He had a precious, elaborate, subtle way of talking, like the men of Charcot's day. His prospecting of the Rolandic, the third ventricle, and the gray nucleus didn't do him much good.....in the end he died of a heart attack, under circumstances that were anything but cozy. An attack of angina pectoris that lasted twenty minutes. He held out for two minutes. He held out memories, his resolutions, the example of Caesar.... But for eighteen minutes he screamed like a stuck pig....his diaphragm was being ripped out, his living guts....a thousand open razors had been plunged into his aorta....He tried to vomit them out at us....I'm not exaggerating. He crawled out into the living room.....He damn near hammered his chest in...He bellowed into the carpet.....in spite of the morphine...You could hear him all over the house and in the street....He ended up under the piano. When the cardiac arterioles burst one by one, it's quite a harp....it's too bad nobody ever comes back from angina pectoris. There's be wisdom and genius to spare.(But eighteen minutes of pure screaming hell might not be so bad in the context of the OP ...)
What, no love for Once Upon a Time in Mexico?
I've only bothered to see two of those, and I used to consider myself a pretty big Johnny Depp fan.
The Tourist is actually quite entertaining -- as long as you don't expect it to be good. I liked it more than I expected to and Johnny Depp has several fantastic scenes in it.
I didn't like Once Upon A Time In Mexico when I first saw it but I recently re-watched it* and thought that it was better than I remembered and that Johnny Depp was also much better in it than I remembered.
I enjoyed The Imaginarium of Dr. Parnassus but, unlike many of the movies on the list, Johhny Depp was not the best part of the movie and didn't contribute that much.
I liked the first PotC and watched both sequels even though my expectations were low (and, unfortunately, not low enough. Though the third movie was better than the second).
Note: I don't watch a lot of movies and my tastes is relatively bi-modal. I either like movies which require attention or (when I'm tired) movies which don't require any attention at all. My strong preference in bad movies, however, is for lightweight movies, I don't like ones that try to manufacture suspense or tension. This is why I can report, for example, that The Rundown is, surprisingly, a watchable movie. Not great, but more entertaining than I expected.
I hadn't realized how mediocre his output has been. Tim Burton, otoh, I was pretty sure about. The Imaginarium was interesting, but, yeah, Depp was stepping in to a small part to help cover Ledger's role. The movie nicely showcased Gilliam's trait of mixing visually amazing scenes with ones that look like they were shot at a high school play by camcorder.
re: 163
No. British actors are often very good at them. I don't mean US accents, where I may not be able to judge well, but it's not uncommon to hear an English actor do a pitch-perfect Scottish accent, for example, where I'd know if it was wrong.
I happened to overhear a rehearsal yesterday, the details of which I cannot fully share, but suffice it to say that an English accent was deployed which was far, far more awful than Dick Van Dyke's in Mary Poppins, and far, far less entertaining as well. I had to work very hard to resist the impulse to run away and cringe in a fetal position, it was so bad.
Maybe later I will post a description of it, pseudonyminously, in another thread.
I don't think many people are actually able to (self?) execute their "I'm going up the mountain to die if I get Alzheimers" plan.* By the time you know you have it, and have gotten to the point where your life is unbearable, you're too far gone to make the rational decision and you're already in a world of care. So you can't or don't do it yourself. Living wills and the law don't permit relatives or caregivers to act on a "execute me if my mind is gone" plan.
*Pretty sure this was my Grandmother's plan, knowing her.
Should I come down with dementia I will adopt an English accent so bad somebody will be forced to shoot me.
This is where fail-deadlies would come in handy. You need some complicated task to be included in your routine where if your performance degrades too much you are executed.
175: "This copy of the New York Times will flood your house with toxic gas if the crossword is not finished in ink by the end of the day."
173: Very true. Someone has to help,* and thereby risk the wrath of the born-again, or just doctrinaire, sibling/stepmother/cousin/local district attorney, and/or, the era being what it is, the misery of being caught in the media panopticon. One might mean only to spare one's aged grandmother needless and humiliating suffering, but the local Fox News affiliate might not see it that way, especially during sweeps.
* I.e., to saw loose the ice floe.
Blow was ok, Finding Neverland was good for what it was, and I loved loved LOVED The Libertine but I would. Back when I was watching English-language movies.
Sorry, I don't want to think about Alzheimer's and end-of-life.
My grandmother made it to 93, a year after my grandfather died (75 years!) and was really very quiet mostly deaf and blind with a very very bad heart. Poor quality of life so they just took her off all meds. She lasted ten more years.
The term "meds" must be banished from the vocabularies of speakers not at least RN- or MD-qualified.
That's the horrifying part of the decision. Too soon, and the person loses some still-good time. Too late, and they can't implement the plan.
Is Flippanter just being a weirdo, or are other people bothered by that word too?
Johnny Depp movies, 2000-2012
23 movies in 12 years? Damn.
Minne has surprisingly strong feelings about Johnny Depp's artistic integrity.
I'm more bothered by veggies than meds, but not crazy about meds either.
I suspect he's just off his meds.
That's the horrifying part of the decision. Too soon, and the person loses some still-good time. Too late, and they can't implement the plan.
Being around my paternal grandmother during the end of her life (which, really, went remarkably well) convinced me that your goal can't possibly be, "this person survives until they reach a stage at which they are no longer capable of good times." You hope that they will die well before that stage which means, inevitably, that whenever they do die there will be the knowledge that some good times were lost.
I have no idea how I will prepare for my own end of life. Hopefully it is a ways off but it seems like the best option is to have people that you trust to make decisions for you, but that places a huge responsibility into their hands and on their shoulders. . . .
Also I just realized that the reason the title From Hell sounded somewhat but not quite familiar is that the bad Johnny Depp movie I saw was The Ninth Gate.
Purple-roofed Ethical Suicide Parlors for some, being shotgunned on live TV by Diana Moon Glampers for others.
181 Don't like that word neither.
181, 184, 185: I am acknowledgedly may be weird, but I can't be the only one irritated by the Very Special Episode sound of people playing with the jargon of other industries, like "meds," "showrunner," "covers" (w/r/t restaurant economics), "overnights" (w/r/t television), etc., etc.
188: I wonder why the more literary-minded (a low bar, I guess) Tea Partiers aren't all over "Harrison Bergeron" like, to quote an Australian football commentator, seagulls on a leftover lunch. Didn't they have to read it in middle school like the rest of us?
190: what word effectively substitutes for "showrunner"?
190: yeah, or "authenticity"
190 ah, I missed the "w/r/t restaurant economics" bit which means I lost the opportunity to make a really funny (IMHO) joke.
Can't recall whether this has been posted or not, but doctors may resist extreme end-of-life care when it comes to their own case. (I regard the NO CODE tattoo story as apocryphal.) This NYT story on terminal sedation is also good on the little dance physicians and caretakers do around the euthanasia prohibition.
194: Authority authenticates authenticity.
190: what word effectively substitutes for "showrunner"?
Whatever nonprofessionals used to call a "showrunner" before the term leaked into the mainstream in, like, 2010 (I'm guessing I'm at least 2 years behind, and I started noticing it everywhere a couple of months ago, and it's almost as annoying as meds and veggies).
I thought they used to be called "Executive Producers" but then the term proliferated and became meaningless.
190: You are right that they are all redolent of a certain kind of know-it-all fuckwadism, but that fades with time and the general mechanism probably serves as a useful way to enrich and streamline the language.
198, 199: I mean, it's some combination of executive producer, head writer, and sometimes show creator, right? I don't think the "executive producer" part is really terribly meaningful, and the "head writer" part probably undersells the amount of involvement they have in the show. Arguably there is very little point for people who are not involved in making television to be talking about the various backstage roles at all, but if you are I'm not clear what a better (or at least less nerdview-y) term would be.
And the reason it leaked into the mainstream is probably that TV writers (at least one of whom (John Rogers) is now a showrunner) got blogs.
Anyhow if anybody wants to gang up on "lede" I"m right there with you.
203 "lede" yeah, hate that shit. Blame it on blogs.
"Showrunner" is creeping auteurism.
"Showrunner" is creeping auteurism.
Right, sure. Is that inherently bad? Or, is it inherently worse for TV than it is for the movies?
I've heard more "meds" than any other term and using it comes without thought. Sorry, Flip.
Incidentally, the mental image I have for the term, "showrunner" is somebody running around trying to talk to everybody, not somebody running the show.
Probably because I picked up the term from John Rogers blog and he's inevitably more likely to emphasize the moments of picking up pieces than of wielding power.
[T]he general mechanism probably serves as a useful way to enrich and streamline the language.
I would agree with this if the products were beautiful, but, like portmanteaux, jargon terms are rarely as gratifying to read or hear as they are to type or utter.
My mental image for "showrunner" is Joss Whedon.
Showrunner is a more or less precise title that refers to a specific task. It has become more prominent as TV writers have become more prominent. Not at all the same thing as an executive producer. It's jargony but like a lot of jargon it's a useful word.
210 I'm more curious as to how far the term goes back in the industry.
It's not any more or less jargony than "director" for the name of the guy who directs the filming of a movie.
Mumble Whedon mumble "I'm a feminist!" mumble "That's why I fantasize about being beaten up by a little slip of a girl!" mumble.
Probably came on the scene in roughly 1985 as a word, maybe from the 1970s. Basically as soon as writers started controlling the TV production process instead of an on-set executive.
Auteur theory inevitably involves slightly doughy nerds getting beaten up by tiny women, Flip.
[B]ut, like portmanteaux, jargon terms words are rarely as gratifying to read or hear as they are to type or utter.
I think I've mentioned before that my maternal grandmother took matters into her own hands the night before she was to be moved from her 16th floor apartment to a permanent painkiller drugfog. She was 83, and was still totally with it. But in terrible pain. And had had the treatment they were going to go with for some weeks, at various times in the last 6 months.
I hope I inherited the physical courage this took.
215: Auteurship complicates relationship.
I know from folks my parents age and older that you only get one chance to pick the timing yourself. If you do not succeed, they make trying again very difficult.
217, 219: Christ, the pointless misery that modern medicine presides over.
The decision isn't always what to do once one has dementia, but what to do when one is feeling healthy and spry and must decide on an operation or treatment that promises to prolong life at a time when it might be better if that ailment was the thing that killed you.
That's a tougher decision, to my mind. Sure, walk off the ice floe, but decide when you're 75 not to get the heart treatment that will work because it might work too well? Too hard, and too many unknowables.
221: It depends on to what quality of life the treatment returns one, no? I would have no idea when something else might pop up, so if a quick and easy cardiac fix is offered I'd probably take it. Full ahead do everything GI cancer treatment now? I'd most likely decline.
"Meds" seems to be used generally to refer to psychotropic drugs which is why it can grate for some.
There was a radio piece about a report on the Estes of antipsychotic prescriptions on nursing homes among the non-psychotic. The rates are particularly high in Massachusetts. It's very scary, because the elderly respond very differently to those drugs and most of the people doing the prescribing do not have expertise in geriatric psychiatry.
161 Heather Graham is cute in From Hell. but this alone rarely salvages a movie.
I was wondering at what point people went from casting Johnny Depp when they wanted a character who was somehow weird or off in a different and interesting way, and started casting him as the same damn weird character in every movie.
222: The problem is from figuring out what the quality of life will be, and what will start the cascade of interventions that lead to a decline. Individually, each treatment makes one problem a bit better. It's also hard (from talking to friends in medicine) to decide when enough is enough, especially with cancer treatment.
My mental image of a showrunner is, of course, Rob Thomas. (No, not that Rob Thomas.)
Johnny Depp's not bad in Dead Man, which I see was in 1996. I have no idea what his problem is now; I assume he can choose his own roles, so I doubt people are casting him in a way over which he has no control.
85: I've told my family that if I become incapacitated, they should stick me in a nursing home somewhere and visit me or not as they choose, without feeling guilty about it.
There was something on NPR recently -- on Diane Rehm, I think -- about long-term care insurance, in which it was noted that nursing home care costs an average of $380/day (I believe). Might have been $280/day, but either way, that's a large problem. Alas.
I must have told the story before of my great great aunt, in her late 80s I think, who was finally going to be taken off the farm where she had lived alone for decades and put in a nursing home. She told her kids and anyone else who would listen that she wasn't going to go. Morning of, the kids showed up and got her out to the car. They went back to lock up the house, and when they returned to the car, she had died in the back seat.
Further to 229, though I hate to continue the grim thread, I will say that my primary concern about my own eventual end of life is not to financially strap my extant family in the process. I'm concerned about the survivors. I don't mean this to sound critical of Sir Kraab, quoted in 229: rather, after dealing with my mom's death a couple of years ago, I'm very aware of how expensive it all is. I can't do that to my family. I sort of consider it my responsibility not to do that.
I assume he can choose his own roles, so I doubt people are casting him in a way over which he has no control.
I say again the episode of TAL that I mentioned in 152 earned Johnny Depp a bunch of points in my book. You can see the opening of the episode here (the part that Depp narrates begins at 4:45).
This video contains more of Depp's voice-over.
I'm not quite sure why I'm quite so impressed by Depp choosing to do that but I was -- it makes the episode much stronger, and he does a good job.
I see that Depp will be playing Tonto in the upcoming movie. "I guess I have some Native American somewhere down the line," he says. "My great grandmother was quite a bit of Native American, she grew up Cherokee or maybe Creek Indian. Makes sense in terms of coming from Kentucky, which is rife with Cherokee and Creek."
Hey Charley, your input is needed in the other thread.
235: He should run for the Senate!
190: I agree with your general point, Flip, but even wearing my Académie anglaise hat, I find it churlish to reject "meds". The general public has just as much connection to prescription drugs as the health workers who deal in them, and should be allowed to call them what they want. I suspect the word's parlance originates from people encountering it in the course of their health care, more than via TV.
For some reason I'm absolutely sure that it's an abbreviation for "medications" rather than "medicines". Probably because it also connotes "prescribed and legitimate" unlike "drug" or "medicine", with all the implications of what's happened to society.
To 223, I think it's just as commonly used outside of mental health, but when people have mental health drugs, that more specific meaning might take precedence.
We didn't keep her in her familiar home because we weren't willing to give up what it would have taken to do it. So her last five years were a nightmare because we were too selfish to give up our lives to take care of her.
It's not selfish to not want to give up your life to care for somebody who is never going to get better, only going to get worse and who will in all likelyhood die relatively soon anyway.
(Here in the Netherlands there's a potemkin village build for Alzheimer sufferers where they can have the pretence of still living a normal life, which seems to work well, but is of course not cheap at all.)
Friends' grandmothers [three, I think] who were old and in the early stages of Alzheimer's lived in sheltered housing complexes, which are fairly common in the UK [and I assume the US?]. The ones in our village in Scotland were a mix of little flats inside a larger building -- with a warden, and some care staff who visited regularly -- and a few little stand-alone cottages, too. And obviously the council had quite a few smaller single-level places for elderly people, which weren't sheltered housing but which did have alarms, and visits by social workers, meals on wheels, and care assistants.
http://en.wikipedia.org/wiki/Sheltered_housing
Have the fake bus stops outside of homes for for Alzheimer's patients in Germany been mentioned / linked here before? Here's a photo of the first one, in Düsseldorf.
Of course, that would never work in the U.S., because so few people take the bus, and the signage for bus stops in different areas is so different.
I don't think many people are actually able to (self?) execute their "I'm going up the mountain to die if I get Alzheimers" plan.
My own father goes up mountains on a weekly basis, which I suppose is the kind of fail-deadly task that 175 is talking about, especially in winter. I am pretty sure that's not why he does it though. He's been doing it pretty much every week since VJ Day and by now it's a physiological addiction.
242: That story is awesome. Unfortunately, it appeared in the Telegraph, which means I refuse to believe it until it is independently confirmed by a reliable source. In fact, given the source, I can't even be sure there is a place called the "Benrath Senior Centre", or a city called "Düsseldorf".
The Telegraph isn't as egregiously evil/wrong as the Mail or the Murdoch papers, I don't think.
Would somebody who knows about these things care to speculate about whether there will be a breakthrough drug to treat Alzheimer's in the next decade or two? I guess the prospects are dim as long as the etiology of the disease is so poorly understood. But given the resources being devoted to research (and the size of the market available to a successful therapy), it would seem at least plausible that some pharma company will come up with a magic bullet.
242: I love that story. I frequently tell it to clients who are coming in to arrange for registration of an enduring power ofmattorney for someone who has lost mental capacity. They are usually carers who may have dealt with the wandering off problem so they enjoy it.
Pensioners here have free bus travel (until the troika make us axe it) so they would be in the habit of taking buses everywhere.
lived in sheltered housing complexes, which are fairly common in the UK [and I assume the US?]
HAHAHAHAHA!
I wish. The most frustrating thing in dealing with my parents health problems is the number of people in the healthcare system who assume that because my Dad is sick I can go and take care of my Mother.
We have assisted living which is fantastically expensive and not usually covered by Medicaid (unlike nursing homes) once you exhaust your assets. Massachusetts has some innovative programs, but the facilities want you to pay cash first and run down your assets instead of letting in the "affordable" residents first, since the rates are lower. It's a minimum of $3200 per month (can be up to $5200 for a miniscule apartment meals and a tiny bit of care. If you need more than 20 minutes a day (or some other figure) they charge you.
The Alzheimer's units at Assisted Living facilities are weird. For example, some of them try to make the kitchens look like they're from the 50's. Those are for people in the more advanced stages, and the doors are locked.
It seems like you could spend your entire life paying for education and long term care.
Yeah, my Dad gets free travel in Scotland [legitimately as a retired person]. Which is amusing because i) he's 62, and ii) fit enough that he still has a visible '6-pack' and legs it up and down mountains with his mates.*
* admittedly in-between drinking and smoking.
My mental image of a showrunner is, of course, Rob Thomas. (No, not that Rob Thomas.)
Which Rob Thomas don't you mean? I presume you do mean the Veronica Mars one. The only other Rob Thomas I know is a British banker, and I'm pretty sure that's not who you're talking about.
246: Doubtful.
Patrick Kennedy is trying to raise money for, i.e. push for Congress to fund more research into, mental illnesses/ "brain diseases," and he has Alzheimer's on his radar.
250: The over 65 get reduced-fee subway and bus tickets. 45 cents instead of $1.70. That's about to go up. A monthly pass for a Senior Citizen will be $28, up from $20. Those are the same rates that the disabled pay.
251. Could be my brother in law? Doubt it.
Unfortunately, it appeared in the Telegraph, which means I refuse to believe it until it is independently confirmed by a reliable source.
I thought it would be obnoxious to link to a German-language article, and that was the best English-language one I found.
re: 251
Singer, from one of those bellowing soft-rock bands* that sell much better in the US than here.
* Matchbox 20
246: You may take some small comfort in the knowledge that those who have had more education, cognitively demanding professions, and keep active can really delay the more debilitating parts. The brain wastes away just as fast, but the same level of physical degeneration produces a much lower level of cognitive symptoms. It is assumed that such a person has a brain that can re-wire itself better. The brain eventually reaches a point where there are so many holes that everything goes to shit anyway, but the slide is (usually) quicker.
239
It's not selfish to not want to give up your life to care for somebody who is never going to get better, only going to get worse and who will in all likelyhood die relatively soon anyway.
Of course it is selfish but sometimes it is ok to be selfish. It would be more selfish to expect your children (or grandchildren) to ruin their lives to care for you in your dotage.
And if in fact Alzheimer's patients were likely to die quickly this would increase the case for disrupting your life to care for them as the imposition would be less if it was over quickly. But in fact Alzheimer's patients often linger in a demented state for many years.
246: My impression is that the current prospects aren't great. The two major classes of drugs right now (cholinesterase inhibitors and NMDA receptor antagonists) treat the symptoms to some degree but don't affect the underlying disease progression. There are a bunch of drugs in trial that target what we think are the disease mechanisms, but none are very successful. But a lot of this work depends on our guess about the mechanism (the "amyloid-B" hypothesis) being right, which it might not be. There are interesting ideas like immunotherapy-style interventions, but they're as speculative here as they are in cancer treatment. A lot of work is now focused on finding early (pre-symptomatic) biomarkers of the disease, since treatment efficacy is highly dependent on when therapy starts.
Mind you, this is just what a quick lit scan turned up over morning coffee. Two decades is a long time, so who knows, but some of these studies could take 10 years to complete.
The brain eventually reaches a point where there are so many holes that everything goes to shit anyway,
Okay, I believe this discussion now qualifies for the title of 'Most Depressing Unfogged Thread Ever.'
ISTR from a discussion here that not getting type II diabetes is a really excellent idea from this point of view.
'Most Depressing Unfogged Thread Ever.'
Remember man that thou art dust and unto dust thou shalt return -- and if you're unlucky the return trip takes a way long time.
I have a vague recollection of hearing from my parents that for a certain defined population (limited by physical, mental, and financial condition) it's cheaper to live on cruise ships than in assisted living.
They arrive today, btw, on their annual drive from Florida to Vancouver Island. I expect to hear enough of the aches, pains, and tribulations of their much older friends to find this thread a solace.
Okay, I believe this discussion now qualifies for the title of 'Most Depressing Unfogged Thread Ever.'
Next meet-up we'll have a group viewing of Iris to seal the deal. A friend of mine actually *bought* that movie after seeing it. Actually I am having lunch with her today, will see if she's watched it since; I'm guessing not.
A couple folks mentioned the use of anti-psychotic drugs for Alzheimer's. I believe the general conclusions are similar to the specific ones from this study:
In this descriptive analysis of clinical outcomes in AD outpatients in usual care settings, some clinical symptoms improved with atypical antipsychotic treatment. Antipsychotic medications may be more effective for particular symptoms, such as anger, aggression, and paranoid ideas. Functional abilities, care needs, or quality of life do not appear to improve with antipsychotic treatment.Emphasis added. Don't know if anyone has tried the LSD/Ketamine combo in a clinical setting.
Right now antipsychotics among nursing home residents are getting attention as likely widespread abuses of off-label prescribing - CMS just unveiled a new initiative to cut down on it. Boston Globe investigative piece (paywalled); Congressional response; new CMS initiative just announced yesterday. I'm not sure if that's atypicals in particular.
Yeah, antipsychotic use in dementia is common, but REALLY not a good idea. As a class they're definitely associated with higher mortality.
I had forgotten about it, but they had my grandmother taking haldol for a while. At some point she changed to a doctor who got fairly pissed off about that, saying it should have been used to treat acute symptoms and then discontinued. She was quite a bit less zombie-like after they stopped giving it to her.
There's nothing like watching a person with dementia behaving extremely differently under the influence of different medications to drive home the point that we're just bags of chemicals responding deterministically to stimuli.
269: To be very blunt about it, so what?
Even with tolerance for higher side effects including mortality for the elderly (which I sympathize with), it seems like antipsychotics don't so much help the patient as make them more convenient for care-workers to handle by zonking them out.
272: Sure, fair point. Even so, there's no evidence that they're especially effective beyond 12 weeks, and little evidence that they do much for psychotic symptoms outside of aggression. But go ahead if you don't mind giving AD patients tardive dyskinesia, parkinsonism, arrhythmia, faster cognitive decline, and a massively higher risk of stroke/TIA.
274: Yeah, the overuse probably stems from this. Many dementia patients will have episodes of aggression, so short-term use is tolerable, but beyond that you're not giving them the drugs for their benefit, but for the caretakers.
277: I wonder if some of it is a resistance to prescribing drugs of abuse (or whatever you call 'something that someone might enjoy'). If all they're doing is reducing aggression, there's probably (I say blithely with no knowledge) some sort of Valium or whatever sedativey kind of thing that'd do just as much good, but it'd be making the demented patient a drug abuser because people get addicted to Valium. Haldol, no one's getting addicted because it's terribly unpleasant.
If that's what's going on, it's stupid and cruel.
My dad likes to joke, a little too often, that if this starts to happen to him, he's just going to drive to a mountaintop in the Rockies and die of exposure.
My dad says we're going to have to push him off a cliff. Be thankful your dad's semi-joking death pact doesn't require any action of you.
278: I don't think that is the case that sedatives work as well to reduce aggression, at least not at doses where people are awake.
276: I watched my grandmother make it to 100 or 101 and my mother to 90. Neither one had anything good to say about that last stage and it sure didn't look like any fun from my POV. If I'm unlucky enough fall into that hell I'd rather be gorked into a complete fog and have massively higher risks of death.
They were of generations where their god(s) made the final decisions tho' my mother cheated a little by refusing her meds (sorry, Flip) so she could die on a specific day. I simply don't see any point to lingering around past the point of being able to take care of my own basic needs. That the final stages can be prolonged almost indefinitely is something relatively new (post-WW2), and not a good thing IMO.
278: My mother got into an argument with her stud-muffin about pain-killers. He was worried she would become an addict. She snapped, "I can't walk, do you think I'm going to rob a bank?" She was around 85, he around 90.
My grandfather didn't seem to have so bad a time of it in his final decade (he died at 94). It helped, of course, that he had all his faculties. It also helped that the assisted living facilities where he lived had lots of Carribean-immigrant nurses who were receptive to his ministerial instincts (his attempts to get his Jewish fellow-residents to really buckle down and pray were less successful). Also, I imagine the fact that he was roaringly, officiously Christian helped smooth his personal path.
Right now antipsychotics among nursing home residents are getting attention as likely widespread abuses of off-label prescribing
That would be "Vitamin H" in nursing home parlance.
This thread is going to prompt me to re-connect with an old college roommate who is a geriatric psychiatrist. Not that I wouldn't be contacting him for purely renewed friendship reasons ... (actually we're about due for our every half-decade interaction).
She snapped, "I can't walk, do you think I'm going to rob a bank?"
"At least not without help. Get your coat."
I think it was Haldol that gave me Tardive dyskinesia as a teen. Seeing me twitching next to my twitching grandfather apparently drove home both how bad his Parkinson's had gotten and how fucked-up it was that I was getting such heavy medications for depression to many of my relatives.
One thing that seems very poorly understood (in practice, I have no idea about at the research level) is the interplay between mental health drugs and other drugs in the long term mentally ill. I had a little experience in dealing with that and doctors seemed to know nothing at all.
Since I'm talking about myself rather than my grandparents, I'll add that I've wondered a lot lately whether if I'd gotten effective medication for the daily migraines I'd had as a teen, maybe I wouldn't have been so depressed and responded so badly to the medications I was given for that. But I'm not going to let myself mope about it.
I meant "drugs for the elderly," that is what you do with a person who has been intensively on meds (sorry Flip) all their life and then needs a whole bunch of new drugs as their body starts to degenerate.
283: I'm not trying to prescribe mandatory ice floes for everyone past a particular age. I've a father-in-law who is quite active and together at 85. He's resilient and seemingly powered by Eveready Energizers. Different strokes of different severity, and all that.
It's the notion that everyone should fight with any and every drug, surgery, machine, and dollar in the current arsenal for every last minute possible that is horrifying. I've been there for three (Not counting the ten or more deaths I saw while working in cardiology) relative's last breath and heartbeat and I'm totally convinced death can indeed be preferable to some forms of life.
281: Speaking for myself, I agree completely. I'm a big fan of the preplanned DIY exit, subject to the caveats upthread. But that's not the same as letting psychiatrists make those decisions for patients, or making them to pacify patients for caretakers. (Not that I think it's decided in exactly those terms.)
Anyway, this is a lot harder than the terminal sedation debate since there's nothing inherent in the disease that's going to kill these patients, and no suffering-based argument for sedating them to the point of respiratory failure. It's grim.
292: It's grim and it's easier to not think about it. Previously, we really didn't have to think about it, pneumonia or other infections took care of that for us in most cases.
Now, with science and technology altering old age and death greatly, most people still don't want to think about it. That we can pick at and tweak each other's ideas here is greatly encouraging to me given the almost monolithic "Do everything!" culture I swam in decades ago.
One part of the thread: I remember The Man Who Cried as an interesting mess but can remember no details other than that it featured someone singing the tenor air from The Pearl Fishers in Yiddish and I may be making that up.
Other part of the thread: I assume somewhere in TFA there is a discussion ranking methods of offing oneself from "utterly delightful" to "worse than the chicken at Tresky's" and discussing their various merits? (The reason I ask is I still have like 100 comments of this thread to read.)
293.last: This thread has mostly caused me think about the legalized euthanasia* in place in some states in the U.S. I've no idea whether I'd have the courage for that when the time came, but not only do I not want to go through extensive procedures and arrangements, but as I said in 231, I do not want (cannot, mustn't) subject my family to the grievous expense involved.
Hey, wasn't there something about end-of-life planning and counseling in the health care reform law? Good idea!
* That may only be in place for people with terminal diseases, rather than for the ineluctably deteriorated.
No Alzheimer's/dementia involved, but I did take the opportunity last night to review with my wife our experience with my father-in-law (recently died at age 85). Similar to 292.2, in retrospect having an active procedure (dialysis for diabetes-related kidney failure) to turn off proved to be a blessing. However, that was not so evident in the chaotic period time leading up to the decision. Her assessment was that he would not have considered it before about 16 months beforehand when some infections led to going on dialysis in the first place (plus added or worsened some other complications), and probably not even then although he would discuss it somewhat indirectly. Then about a year later he had a small stroke which really led to complications and she (and I, but I defer to her as she was with him much more) does think that in retrospect he would have chosen to stop treatment then. In the end he lived for 9 days at his apartment after his last dialysis and was far more comfortable and relaxed than during any of the prior year and a half. The hospice people were excellent. Turned out that when he really was ready to make the decision that his fear that there would be a perception of his having "given up"/committed suicide had been holding him back and was a tough hurdle to overcome. My wife did also struggle with some doubts about her role in his decision but had pretty good support from her sibs (in the one "Maui" case it was a bit mixed and that certainly added to the long list of crimes against that person in my book although my wife's a bit more forgiving).
I'd like to think I would have not gone on dialysis at all (or for only a short time to arrange my affairs), but have no confidence in what I would actually do in the event. Maybe lose some weight 27 years earlier....
I wonder if some of it is a resistance to prescribing drugs of abuse (or whatever you call 'something that someone might enjoy'). If all they're doing is reducing aggression, there's probably (I say blithely with no knowledge) some sort of Valium or whatever sedativey kind of thing that'd do just as much good, but it'd be making the demented patient a drug abuser because people get addicted to Valium. Haldol, no one's getting addicted because it's terribly unpleasant.
No, opioids are also being prescribed in big buckets for seniors, though, per 280, for pain rather than behavioral problems.
There might be a thread in this if there hasn't been already: Suffolk County Grand Jury report arguing it was a huge profit-driven mistake to start prescribing opioids for chronic non-cancer pain in the 90's. The main problem with the argument is it's hard to prove whether these prescriptions actually lose efficacy over time (outcomes with them are worse, but disease severity covaries with opioid prescription), but the downsides are clearly huge.
Hey, wasn't there something about end-of-life planning and counseling in the health care reform law? Good idea!
The latest Massachusetts cost control legislation brings that back, actually.
My grandfather died at age 95. Until around ninety he was completely fit, mentally fine, and very active. He slowly deteriorated, but it was only really the last months that I gather sucked (I was several thousand miles away). An uncle who died around fifty suffered horribly for the last couple years of his life, however he was fully mentally alert the entire time, and it seemed to me that he felt that seeing his kids grow up outweighed the physical suffering for him.
My remaining grandfather, in his mid-90s, loves his Kindle. It lets him get a lot more than is sold in large print, even though other people have to load the books for him. I'm told that earlier he accidentally bought a game on it.
The game was an accident. 50 Shades of Grey was all his idea, no matter who he tried to blame.
This is great [via Martin's blog]
http://cloggie.org/wissewords2/2012/05/31/proof-positive-its-ozzys-world/
It's a shame you can't zoom in on Birmingham.
Gah, meant to stick this in the other thread.
I've talked about him before, and linked a recent photo,* my grandfather is 98 and still in decent shape. He repeats himself a bit more than he used to, but not in any major way, needs a hearing aid, and he gets tired sometimes and can only handle company for a few hours at a time.** However, despite a minor stroke a few years back, there's no sign at all of dementia, and he can walk for an hour or two without a stick, as long as he gets a sit down or a cup of tea every now and again. He seems quite keen to go on for as long as he can, as he is mostly physically well and mentally together.
* http://farm6.staticflickr.com/5254/5503489534_ddd4f8cae3_b.jpg
** my Mum swears he was like that 50 years ago and nothing has changed.
302. Why is the CIA World Factbook keeping a record of metal bands?
re: 306
I think the CIA have a record of population, and then records from the 'Metal Archives' are being matched with that to produce a per capita heaviosity figure. I assume the 'Metal Archives' aren't very comprehensive as I can't believe there aren't at least a few central African metal bands.
A bit of googling finds:
http://metal4africa.com/bands/?bands_by=country
But those all seem to match quite well with the Metal Archives, too. Plus:
http://theblackgirlintoheavymetal.blogspot.co.uk/2009/07/heavy-metal-in-africablack-africa.html
re: 305
Last year. The week of his 97th birthday.
I would have guessed 85, tops. I should take better care of myself, just in case.
re: 309
Yeah. I think to myself smugly that I'll have the genes. But the truth is that he competed at long-distance running and boxing when he was in the RAF and kept himself fit into old age. He used to get up every morning and do push-ups, sit-ups and so on for half an hour or so before he had breakfast. He stopped doing that in his early 80s. So he had the discipline to keep at it a long time.
Yeah. I think to myself smugly that I'll have the genes.
My dad's only in his early 70s, but I'm doing the same, looking at him and counting my healthy-old-age chickens. He's still running and lifting weights.
Wowsers. I'm just amazed by the lack of liver spots. My grandparents are about 10 years younger and they are very healthy and lucid but the complexion, not so clear.
Upon further inspection liver spots result from sun exposure. I guess living in Scotland helps limit that risk factor.
Both my parents are in good shape, yeah, so I cross my fingers. I smoke much less* than my Dad, and probably do more exercise. But he eats better, is naturally a bit more muscular, and seems to keep the weight off.
* I barely smoke at all. A pack will last a month or more.
re: 312.last
Yorkshire born, not Scottish, and he lives in London. He also travelled abroad a fair bit when younger, and was outside gardening all sunshine hours until about 10 or 15 years ago. So I don't think the weather is a factor. He has liver spots on his hands.
I smoke much, much less than my dad did at my age. He was two packs a day.
I only smoke when ttaM is at my apartment.
311: In my ancestors (direct and their sibs) there has been a generational pattern. Great-grand-parents were all fairly long-lived with 2 or 3 over 100. Next generation not so much, most in the early 70s, a couple into the early 80s. And then in my parents generation, of 8 only 1 dead at age 85 and the rest in the 80s and getting along at various levels of OK--no one as badly off as my father-in-law was for his last 5 years for instance.
304 That's great ttaM, but I really want to see him shred that axe in the background.
All 4 of my grandparents lived to be at least 80, so my father getting terminal cancer at 67 shocked me. What he got was so rare though that there's no particular hereditary tendency, except that his weight made him more likely to get something and I'm the one in the family that struggles with my weight. The 4 grandparents basically went, 1 long lived with dementia, 1 long lived with pretty damn good health & mobility & mental capacity, 1 fairly long lived with long term physical debility but no mental deterioration, 1 fairly long lived with a couple of months final illness.
The one with the best health outcome was always fit and active, he lived with us or rather we with him so he had plenty of company, ate proper meals every day and got lots of sleep as he had devlo
ped a siesta habit during his second career (from 50 something to age 80 he was a postmaster which involved for most of that time getting up during the night to put through telephone calls.
I have probably already spent more of my life sitting than he did in his 92 years.
