ANS -- A Better Death than They Offered Him

Here is a very interesting article and subsequent discussion about death.  About what to do when one's brain goes before one's body, and you're trapped in a miserable facility.  It's an interesting discussion, really.... Article is by Brad Hicks. 
Find it here:  http://bradhicks.livejournal.com/458088.html 
--Kim



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A Better Death than They Offered Him

• Feb. 22nd, 2012 at 10:57 AM

I've been following this story since it first broke, a hair over a month ago: Carol Daniel, " Nursing Home Sued after Resident Walks Away and Dies," KMOX-AM, 2/21/12. Capsule summary: back in January, on one of the only actually seriously dangerously cold days we've had this winter, an elderly dementia patient escaped from a Belleville, Illinois nursing home; police found his body, where he had laid down to die in a creek bed out of sight, two days later. The guy's family are distraught that the nursing home failed to stop him from escaping, and now say that they should have known better, because the guy had a history of escape attempts.

Oh. My. Fucking. Gods. I should damn well think he was trying to escape. I will, too.

Maybe I'm projecting my own issues onto this story, but let me tell you: I have no more intention of dying of progressive dementia in an in-patient convalescent facility than I have of dying hooked up to a van-load of late-medieval torture devices in some "intensive care" facility. Both of these ways of dying consist, in my opinion, of taking advantage of the dying person's weakness to inflict tortures on them, uncaring of how much you're making their life suck, just so you can selfishly hang onto them.

Can you begin to fucking imagine how awful even the best damned convalescent facility for dementia patients is? Even if these places had far higher budgets for entertainment and decor than they do (and they don't), even if the staff to patient ratio was adequate (and it's not), even if patients had more than comfortable amounts of living space to themselves (and they don't), what is the daily, hourly life of a convalescent dementia patient? Alternating periods of painful confusion that must feel every bit as unpleasant as being dosed with some horrible hallucinogen, and moments of lucidity in which, gods help you, you discover that you are imprisoned with several, or several dozen, or gods forbid a hundred or more, people, most of whom are in the grip of the same awful mind-robbing hallucinatory experience.

Worse luck for a guy like me? Just statistically, almost all of them will be mundanes. People that I have nothing in common with. Worse luck? Old mundanes. Have you spent time around old mundanes, lately? They can only talk about three things: sports (in mind-numbing detail), which parts of their bodies have malfunctioned most recently (in grotesque detail), and how awful liberals are. Complain, complain, complain. And I don't entirely blame them; chronic pain fucks you up, and I get that.

But if, because you can't stand the thought of a world without me in it, because you have utterly failed to emotionally prepare yourself (as I have) for the fact that some day I will die, you want to stick me in a building full of patients who were over-worked, who are exhausted, ill-informed people? And the caretakers who are, though overwork and exhaustion, being turned into the same people they are stuck caring for? Fellow patients who have spent the last decade or more of their lives living with chronic pain and who have thus lost almost any ability they ever had to think about anything but chronic pain, and the disappointment of their failing bodies? And leave me nobody to listen to except for them projecting that pain and disappointment outwards onto people I actually admire? When even I no longer have the mental clarity to read and to discuss current events, when my mind is fading in and out, when awful gaps in mental clarity where I don't know when it is or where I am or why I hurt so much or who are all these awful awful people are the only relief I get from the awful awful people themselves?

Then I hope to the gods that on some super, super cold night, during one of my remaining moments of clarity, I find an un-alarmed fire door with nobody between me and it, and I hope that clarity lasts long enough, as it did for this guy, for me to find some place where I won't be captured and returned in time, some place with a view of the trees and the stars. I hate the cold, but what I hear from people who've nearly died of it is that only the first hour or so is unpleasant, and even it doesn't sound any more unpleasant than being in a convalescent home. As awful a death as freezing to death would be, it's a death after a couple of hours of torture, not a couple of years.

I absolutely will be one of those patients who keeps making escape attempts. And I'll be relentless about it. So if somebody does get away with sticking me in one of these places, and I do end up escaping? Don't you fucking dare blame them for not stopping me. Because they probably can't. Because I can, and will, keep trying and I only need to succeed once.

(Of course, I've long assumed that it would never come to that. We Hickses are a mayfly breed; none of us has ever lasted that long. But I'm starting to feel cursed with unwanted longevity, so I'm starting to have to worry about this.)

Comments

( 28 comments ­ Leave a comment )

naath wrote:
Feb. 22nd, 2012 05:02 pm (UTC)
I couldn't agree with you more. And god damn it I want my choice to be respected.
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dd_b wrote:
Feb. 22nd, 2012 05:07 pm (UTC)
Part of the trick of course is not to have too many failures -- and not have a history of escape attempts for other reasons. That last may be hard to control if dementia is in fact the issue.

I'm spending too much time in a place, not aimed at dementia, but a fairly good care facility, with my mother, the last few years. It's not wonderful, and it's probably not helping keep her mentally sharp.

Old mundanes now may be slightly worse than old mundanes of your generation. But mundanes are still mundanes, and the majority are mundanes by definition.
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janetmiles wrote:
Feb. 22nd, 2012 05:07 pm (UTC)
I agree. Gods willing my body will die before my brain.
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otterhill wrote:
Feb. 22nd, 2012 05:16 pm (UTC)
Ways to avoid this
Find one or two people you trust and give them you healthcare power of attorney. Without this the state or a hospital will make decisions for you if they decide you can't.
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anadamous wrote:
Feb. 22nd, 2012 05:25 pm (UTC)
The complication for caretakers who are trying to be responsible but are not really enlightened about the need for a dignified death is that dementia, Alzheimer's, etc are well-known to induce wandering in patients, even wandering away from homes where they're being cared for by their families, etc.

Which is not to say that many of them don't have a good reason to "wander". Even the Mayo Clinic site makes this pretty clear.
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westrider wrote:
Feb. 22nd, 2012 05:35 pm (UTC)
My Mom and I have actually talked about this and are both right on board with you. Not sure how things might go down with my Brother in that scenario, I don't think he's put as much thought into this sort of thing and I don't think he's as good as letting go.

And purely for myself, well, I like the cold. I honestly can't think of a way I'd rather go.
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kathrynt wrote:
Feb. 22nd, 2012 05:45 pm (UTC)
My husband's grandfather was in the best dementia care facility I've ever seen in my entire life. It rose to the level of "bleak," as opposed to "horrifying" or even merely "grim," and cost $15K per month.
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xiphias wrote:
Feb. 22nd, 2012 05:51 pm (UTC)
Two words: living will.

Make sure that anyone who might have a hand in deciding what happens knows this.
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radiumhead wrote:
Feb. 22nd, 2012 05:52 pm (UTC)
I dont know if theyre better off dying on the streets, alone.

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lysystratae wrote:
Feb. 22nd, 2012 05:55 pm (UTC)
My family history suggests I'll live to be about 80, and be fully mentally intact the whole time (and yet, that is still the one thing I worry about). I've already volunteered to make sure my various friends and family get the ending they want; I'll be happy to add you to the list.
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hugh_mannity wrote:
Feb. 22nd, 2012 06:16 pm (UTC)
I'll be right there with you, jimmying the locks.

(Which reminds me, I need to brush up my lock-picking skills before I get much older -- I turn 62 this summer)
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cestmama wrote:
Feb. 22nd, 2012 07:18 pm (UTC)
Eh. Forget the cold. I intend to steal a Fentanyl patch and cut it with a pair of scissors. If you cut a patch with medicine on it, the medicine is released very quickly, so I'll get a big dose of the medication. It's much more potent than morphine and it will stop my breathing pretty fast.

Barring that a double deck of heroin should do the trick.
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jesslin wrote:
Feb. 22nd, 2012 07:32 pm (UTC)
The problem, of course, is that we have at least some legalities in place to deal with the body that dies before the mind (living wills, assuming they're followed). We have no such provisions for the mind that essentially dies before the body - it's either murder or suicide, both illegal even if they would be more merciful or dignified.

I will absolutely agree, though, that if I manage to off myself once my mind is gone, nobody better be suing on my behalf. A functional brain in a broken body is one thing, but once the mind is gone, what's the point??
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elizilla wrote:
Feb. 22nd, 2012 07:43 pm (UTC)
Twice a week, I go to see a local fan who had a stroke last summer. He can't talk, he can't read, he can't get out of bed. One side of his body is paralyzed, and he's in pain. They have him on a feeding tube. He's stuffed in a way-too-small room with an irritable elderly mundane who has a loud tv and bitches about the noise when we visit, and who is just ambulatory enough to steal his clothes.

I'm not his particularly close friend, but he doesn't have anyone else, and no one should be left alone in this warehouse. I don't have his guardianship, so all I can do is rattle the court appointed guardian's cage when something is really bad. The nursing staff aren't bad people, but they are mundanes and they're spread thin. There are things that don't get done without someone to push for them - for example, getting his fingernails and toenails cut. I think it's important that the nursing staff see that there's someone who can talk, who is paying attention, so I make sure they see me.

He will be trapped there for the rest of his life, and that could be many years. I'm sure he'd rather be dead, but it's not allowed, so I guess I will just keep visiting and trying to get him smaller things to make him slightly more comfortable, like getting his nails trimmed.

The nursing staff tell me that the majority of their patients never get any visitors at all. They have day rooms with nothing in them. Even though my friend cannot read, I have been taking boxes of books up there. If it makes the day easier for any of them, it's worth doing.
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amblinwiseass wrote:
Feb. 22nd, 2012 08:45 pm (UTC)
And people wonder why I smoke so much.
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alobar wrote:
Feb. 22nd, 2012 11:19 pm (UTC)
I worked briefly in a nursing home. There was a professional prizefighter whom I thought was over 70. He was under 50. When he had $$ he used heroine.

There was a guy who took me aside and begged me to help him escape. Had I not been so poor I would have passed him a cutter for the chain link fence, but as I could barely buy food, I could not.

Then there was a semi-senile old lady in a wheelchair. She looked over 100, but I have no idea how old she really was. A nurse introduced us. She said I was new here. The old lady thought I was a patient like her. She patted my hand, looked into my eyes, and said "You'll like it here. Everyone is so friendly and the food is great." I had nightmares for years about being a patient in any nursing home!
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drewkitty wrote:
Feb. 23rd, 2012 03:06 am (UTC)
My stepmother was an elder abuse investigator. She enjoyed it, and not because she was busting people. It was the power trip.

I am not sure which frightens me more: the odds of dying young (but far older than most of the soldiers that hit the beach at Normandy) or the odds of living a very, very long life, the last third of which is misery and pain.
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tzaddi_93 wrote:
Feb. 23rd, 2012 04:13 am (UTC)
My grandmother had always made my mom promise never to put her in a nursing home. She had a stroke when I was in the 8th grade, which destroyed most of her mind. She spent the next 5 years dying by inches. We went through all of her savings and still ended up borrowing money from a cousin of my mom's in order to pay for in-home caretakers so she could stay in her house.

She barely remembered anyone by the end. Several times, when it got really bad, my mom pulled me aside and told me, in no uncertain terms that if she started losing her mind when she got old, she was going to kill her self. She also made it clear that if I tried to stop her, she would never forgive me. Don't blame her a bit, though it was startling to hear the first time.
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pingback_bot wrote:
Feb. 23rd, 2012 06:16 am (UTC)
The Infamous Brad - A Better Death than They Offered Him
User yyttt referenced to your post from The Infamous Brad - A Better Death than They Offered Him saying: [...] so I'm starting to have to worry about this.) Source: http://bradhicks.livejournal.com/458088.html [...]
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papersky wrote:
Feb. 23rd, 2012 01:34 pm (UTC)
I heard about a dementia care facility where they put a fake bus stop outside. The patients escaped, and waited for a bus that wasn't coming, and after a while the staff came out and asked if they'd like to come inside and wait.

I couldn't believe that nobody else saw this as a horror story.
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nancylebov wrote:
Feb. 23rd, 2012 02:40 pm (UTC)
I didn't see it as a horror story, but I should have. I do think Time Enough for Love can be read that way-- match the first section with the last line.

More generally, a lot of humor is either about low status people dominating high status people, or vice versa.

As for the main subject, I think anyone who isn't well above average in either being loved or money (or very much preferably both) isn't going to get adequate care if they're old and disabled. The necessary hands and minds just don't exist.

The only way out is much better tech for keeping people in decent shape and/or supplying care.

I think the keeping people in decent shape part might be easier. There are already people who are mentally sharp and physically mobile past their nineties, and (I think) who don't have extended incapacity before they die. It's definitely genetic, and it's being studied.
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anitra wrote:
Feb. 23rd, 2012 05:31 pm (UTC)
My maternal grandmother is one of these - she's a bit frail, but honestly she's been "a bit frail" since she was 70. She's now 96... still lives on her own (with some family a mile away and more 20 minutes away). Her hearing is failing and she can't drive, but she reguarly goes for walks using a device that's like a rolling walker with a seat (causing her daughters much consternation). She's probably in better health than her eldest daughter who is 72 and has had type II diabetes for at least 15 years...

I hope, for all our sakes, that when she goes, it's quickly. Brain and body around the same time. The older she gets, the more likely that seems.
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lydy wrote:
Feb. 23rd, 2012 04:45 pm (UTC)
I didn't think of it as a horror story. In it's own way, it seemed kind of sweet. Alternatives...there are so few alternatives. The fake bus stop allowed people a sense of going someplace and doing something. It is no kindness to try to argue someone who is 90 into believing he's 90 when his disease makes him certain that he's 9 and has to catch a bus home to see his mother. You won't win the argument, and the patient becomes incredibly agitated. Instead, a nice, neutral space to wait...eventually they forget. That's the horror, really, that eventually, they forget. But that's the central truth of Alzheimer's, and all the horror in the world doesn't stop it from being the case. This is the same facility that stopped arguing with the baker who woke up every day at 4 am and wanted to make bread, who was proud that he never missed a day of work. Instead of the usual institutional answer of making him stay in bed for the prescribed amount of time and so on, they let him get up, go to the kitchen, and mess about just like he always did. It gave him a sense of purpose. They didn't say if his bread was any good, probably wasn't. Here's the thing: all the choices are bad. I don't want it to be me. But with intransigent brain damage, sometimes gently allowing the person their illusions is kinder. I truly think. But gods, I hope it's not me.
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nancylebov wrote:
Feb. 24th, 2012 10:41 am (UTC)
Whether it's a horror story depends on your take on the mental state of the people waiting for the bus. If they're trying to get away (especially if it's for a good reason), but too mentally foggy to do anything effective, it's a horror story. If they are simply living a past scenario where catching a bus is the reasonable thing to do, then a fake bus stop is a kind solution.
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anitra wrote:
Feb. 23rd, 2012 09:51 pm (UTC)
I'm with you, Brad - a quick death, both body and mind at the same time, please. I've had relatives with Alzeheimer's and/or dementia, and it's hard on everyone involved... also had a great-grandmother whose body failed her long before her mind. She could barely communicate, and couldn't take care of herself at all... but she lit up when her children or grandchildren came to visit her, she laughed at their jokes, and she could make herself understood with much effort. Still, she ended up needing to be in a nursing home for over 10 years before she finally died, and that can really suck the life out of a person.
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brockulfsen wrote:
Feb. 23rd, 2012 10:32 pm (UTC)
I used to be with the volunteer emergency service here in Oz, the State Emergency Service. Our city was advertised as a retirement destination, so had a large number of nursing homes.

We were often activated by the Police for large scale searches for wanderers and almost weekly put on standby if an escapee/wanderer was not found in a couple fo hours.

About half were just wanderers, about a quarter negligence and stupidity on the part of care facilities (thankfully the industry has been cleaned up somewhat since) and about a quarter were clearly deliberately looking for a way out and many of those for a "way out".

You could often pick those looking for a place to die. No matter how quick we were we seldom found them alive. Extremely hot or cold weather was often the trigger, or a couple of weeks of rain. Got to the point we knew the patterns, so would start with cliffs and creeks at those peak times. Some we'd find, just curled up somewhere like an old cat who'd snuck off to die. Some would take a more decisive route, usually veterans, a quick swan dive over a local cliff. Alcoholics (even dead sober ones) would lay them down to sleep on the railway line, luckily we didn't have to deal with those most of the time.

I am a strong advocate of assisted suicide, not just because my family is a Huntington's kinship group.
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hairyfigment wrote:
Feb. 24th, 2012 02:51 am (UTC)
You're only mostly dead.
Have you considered cryonics? They don't have any clear provisions for assisted 'suicide', presumably because they don't want to endanger the people they have frozen. But it still seems like it could work. I have a hard time taking any possible downside seriously - how vindictive do you believe the gods are?
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bradhicks wrote:
Feb. 24th, 2012 06:48 am (UTC)
Re: You're only mostly dead.
I cannot begin to imagine any way to convince me, personally, that it is moral to spend that kind of money on a corpse. Life is for the living.
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bradhicks

J. Brad Hicks

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