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A nation full of immortal poor people.
January 25, 2012 1:39 PM   Subscribe

In 2002, Doug Monroe placed his parents in assisted living. A decade later, he's looking back at "the weighty financial and emotional costs that come with a parent's immortality": The Long Goodbye.
posted by zarq (85 comments total) 44 users marked this as a favorite

 
"Daddy is ninety-three now and wears a diaper, is spoon-fed, and urinates through a catheter, drifting in and out of deep sleep in which he gasps for air and appears to be dead. Trisha, my sister, texted a picture of him in October to one of her daughters, who texted back: “Happy Halloween!” When he wakes up, his caregivers dress him and plop him in a wheelchair. He rolls around like a child until it’s time to eat again."

Handful of sleeping pills and a bottle of pinot noir for me thanks.
posted by dobie at 1:46 PM on January 25, 2012 [25 favorites]


I have nightmares about this weekly. My dad is 69 and going through a lot of health problems that won't kill him but have impacted his quality of life severely. He was 41 when he had me and I'm not even close to ready to take care of him. In fact, I'm finally about to move out of the state for new opportunities but I've delayed and delayed to be close to my parents while he goes through this stuff.
posted by OnTheLastCastle at 1:50 PM on January 25, 2012 [3 favorites]


My grandmother died last year at the age of 93. She lived on her own until the age of 92. It sounds great, but it wasn't. She lived in a different city, about 3 hours away by ferry and by car.

She was, to be blunt, a difficult person to be around, so there was never any question of her coming to stay with my parents. Instead, she lived on her own, eating very little, and drinking a lot.

Social services resisted declaring her incompetent for a long, long time, even though she suffered a series of strokes that dramatically reduced her cognition and memory, and, to some extent, her mobility. There were 3 occasions when strangers found her passed out on her lawn.

The neighbours all thought my mother was to blame somehow, but the reality is that if an individual resists being put into care, there is not much you can do, especially when the system is designed to prevent folks from being declared incompetent (in Canada care homes are paid for by the government).

So, for half a decade my mother and father, no longer young themselves, would travel to see my grandmother every weekend to make sure she wasn't living in filth, and that she was getting enough to eat. Along the way, "friends" appeared who attempted to drain her back account, and, at the very least, charged 40 dollars to go out and get a bag of groceries.

Eventually she was declared incompetent, and eventually she got into a home. It was such a relief. She was fed regularly (she put on weight), and was clean, and was even moved to a residence in our town.

But the irony is, she almost didn't make it. Several years before she suffered what looked like a massive stroke. But the doctors worked long and hard to save her and bring her back, which led to about 5 years of a miserable existence on her own, and 1 year of relative comfort in a home before she died.

That's medicine for you.
posted by KokuRyu at 1:50 PM on January 25, 2012 [6 favorites]


Roll on the day when you can write a living will that specifies the point at which you get a little help shuffling the mortal coil off.
posted by yoink at 1:52 PM on January 25, 2012 [6 favorites]


Sometimes it seems like the only thing scarier than dying is living forever.
posted by 2bucksplus at 1:52 PM on January 25, 2012 [8 favorites]


I'd be fine with living forever. Dying forever scares the shit out of me.
posted by Holy Zarquon's Singing Fish at 1:53 PM on January 25, 2012 [59 favorites]


(By which I mean the process of death, not what happens afterward)
posted by Holy Zarquon's Singing Fish at 1:54 PM on January 25, 2012


> A while back, I had a talk with my son, Matthew, about what was going on with my father. I said, “If I end up like your grandfather, I want you to take me out in the backyard and shoot me.”

Matt thought about it and then said quietly, “Dad, it’s time to go to the backyard.”


I don't get it. Is the son implying he'd rather shoot him now than risk a similar situation in the future?
posted by The Card Cheat at 1:54 PM on January 25, 2012 [2 favorites]


This topic came up on the blue last month, via a thoughtful essay on how doctors die. There has since been some follow-up. Here's the original essay
posted by Wretch729 at 1:59 PM on January 25, 2012 [4 favorites]


I think about this every now and then. Not so much about my parents, but about me. When I eventually deteriorate to the point where I am no longer myself, I want to go out with a bang. Have a nice vacation somewhere (hopefully with my husband he's still kickin' too), have a fantastic dinner and a night of dancing, lay out under the stars bullshitting about shit we did as kids, make love one last time, and then blissfully pass on with a bottle of pills and a bottle of wine. A life where I am confined to a wheelchair, barely cognizant of what's going on around me, totally dependent on others to feed me and clean up after me... that's no life at all.

My mom freaks out when I mention this. She has it in her head that taking your own life, even if you'd otherwise be a vegetable, is the worst sin imaginable and a sure way to be barred from heaven. I figure if, to get into heaven, I need to suffer for untold years wallowing in my own piss and shit, not knowing anyone and unable to even dress or feed myself, and carry on in this state until I finally die of "natural causes", well, that heaven isn't anywhere I want to be.
posted by xedrik at 2:02 PM on January 25, 2012 [15 favorites]


“Just think, Mama,” I said. “When you turn 98, it’ll be the year 2016.”

“Don’t say that!” she snapped. She looked like she meant it.


How odd. The last time I saw my grandfather alive, it was a few weeks before his birthday. he was turning 88, so I made a crack about how he'd be "crazy 88" soon. He was usually the type of person to be in good spirits about birthdays, but he just gave me this sort of weary look. I think we both knew in that moment that he didn't want to live to his next birthday.

He didn't. He died about a week short of it.

It was interesting, in an anthropologist's sort of way, to watch his downfall. After my grandmother died, he continued to live alone in the house he'd raised four children in. We knew something was wrong when he got into a car accident because of a leg cramp, but he insisted he was fine. He only stopped driving after we confiscated his keys and moved his car out of his driveway after a stroke. We moved in a woman to care for him--he loved the attention, seemed to enjoy being waited on and cooked for. But eventually, more strokes and he had to be moved into assisted living. He kept trying to sneak out, over and over again. In a way, his accepting of his situation there seemed to indicate to me the beginning of his true decline.
posted by PhoBWanKenobi at 2:02 PM on January 25, 2012


I don't get it. Is the son implying he'd rather shoot him now than risk a similar situation in the future?

The son is suggesting that he's already like the grandfather. I think its intended as a kind of dark punchline.
posted by Joey Michaels at 2:07 PM on January 25, 2012 [5 favorites]


Absolutely horrifying, thanks zarq
posted by clockzero at 2:11 PM on January 25, 2012


I recently came up with a golden business opportunity around this very issue.

The problem: By the time you would want to call it a day, you're no longer mentally competent to recognize that your at that point.

The solution: Pay someone to shoot you if you fail to call in with a safe word for three consecutive months. The thinking being that if you're alive but not capable of making the phone call (or having someone do it on your behalf), you're probably in dementia's gentle embrace.

It should be noted that this plan was generated with my 60-year-old mother, who is currently dealing with putting my 88-year-old grandmother in a home for Alzheimer's patients.
posted by bpm140 at 2:15 PM on January 25, 2012 [12 favorites]


I can't imagine that this medicare/HMO/immortality situation will last another fifty years, but if it does, I'm officially clocking out at 80, unless I've got something reallyimportant to do, like being a primary caretaker of some children, or growing peoples' food.

Also, the cynic in me wonders how much of the opposition to assisted suicide is funded by companies that make money treating intractably old people and billing the government.
posted by Jon_Evil at 2:15 PM on January 25, 2012 [3 favorites]


The other part of this story is the one about how expensive all this end-of-life care is and what a waste of money it is.

These are not all the stories of getting old and infirm. There are other stories. But these are the ones that are becoming the stories that dominate our consciousness and our culture lately, so I'm hoping that by the time I get old and moderately infirm, someone isn't sending me an official letter telling me to present myself for euthanasia. This despite the fact that I was the local daughter through the ten years of my mother's deterioration with Parkinson's Disease.
posted by Peach at 2:19 PM on January 25, 2012 [2 favorites]


I've always liked this article, "I Want to Burden My Loved Ones."
posted by resurrexit at 2:22 PM on January 25, 2012 [3 favorites]


I am the only caregiver for a not-so-elderly aunt who I visit once or twice a week in the nursing fought she fought to keep herself out of. People's bodies and will to live are so much stronger than some of the individual parts. She was a long time heavy smoker and now is crippled with emphysema, attached to oxygen to live, no longer able to walk.

It is an interesting view of life spending time with those in suspended pre-death. It is in the nursing home's best interest to sustain life because the flow of Medicare dollars is never ending. Once someone is in the nursing home, the staff physicain will need to see them and bill accordingly. Toenails cut? Billed to medicare as podiatry. New glasses? Yep. Depressed? Psychotherapy. My aunt's quality of care has gone up dramatically, but often it is stuff that may not be entirely necessary. She loves the drama and attention and is considered to be suffering from dementia and demands more care daily. I am amazed what gets done when I see the monthly statements of Medicare billing.

Just to say, I do not begrudge her her life, whatever quality it is. She decided that she wanted to be kept alive by any means neceassry and I witnessed as her next of kin. But wow, it has made me aware of a side of things I might never have seen.
posted by readery at 2:29 PM on January 25, 2012 [1 favorite]


Now caring for my 91 yo grandmother and my 73 yo mother. Each in her way difficult, and both slowly, slowly approaching death, living with pain, struggling with medicine and therapy, struggling with anger and regrets. But in a Scandinavian welfare state. It is difficult for a number of reasons, some emotional and some practical, but not one of them economical. And our healthcare system is still cheaper than the US system.
As I read this, I wonder about the immense indignity of mixing money into this already horrible situation. Personally, I'd rather pay taxes. But each to his own...
posted by mumimor at 2:31 PM on January 25, 2012 [26 favorites]


My very staunchly Catholic grandmother started talking about suicide about a year into having a rare incurable vascular disease that robbed her of her sight, her bladder/bowel control, and her dignity. The worst part was that she was still mentally sharp.
posted by desjardins at 2:33 PM on January 25, 2012 [1 favorite]


One comment suggested "checking out at 80." This is the sort of picked date that usually gets revised as one ages.
posted by Postroad at 2:35 PM on January 25, 2012 [9 favorites]


One comment suggested "checking out at 80." This is the sort of picked date that usually gets revised as one ages.

Better to go too early than too late.
posted by vorfeed at 2:35 PM on January 25, 2012


It is in the nursing home's best interest to sustain life because the flow of Medicare dollars is never ending.

That's not a rational assessment. After all, it's not like there's a shortage of old people such that if they lose one person then they'd be stuck with an empty bed for months on end. Indifference or carelessness, on the other hand, could easily result in an expensive wroingful death lawsuit. Having worked in a nursing home in a country with socialized medicine, I don't think these ethically challenging situations are unique to the US or its medical care system, although it does have a more direct financial impact upon the surviving relatives here than elsewhere.
posted by anigbrowl at 2:42 PM on January 25, 2012 [3 favorites]


The reason this cannot be solved with reason and an algorithm is that you do not monotonically go downhill into misery. You go down in waves. You have just as many good days as bad days for awhile. And then you have enough good days that you are willing to put up with a string of a few bad days. And then finally they are all bad and you might not retain the resources to finish yourself off. Nobody wants to be a hopeless case but it sneaks up on a lot of people.
posted by bukvich at 2:45 PM on January 25, 2012 [20 favorites]


I miss my parents, who died relatively young, and yet, I feel guilty relief that I won't have to help them through dementia or a nursing home, as they had to do with their parents.

Though I strongly suspect my husband's parents will be at least partially our responsibility, and everyone on that side lives to their 90s, some in relatively good health, others not.

I wish we could come up with more humane ways to allow ourselves to die.
posted by emjaybee at 2:48 PM on January 25, 2012 [4 favorites]


Matt thought about it and then said quietly, “Dad, it’s time to go to the backyard.”

This was not the right piece to end on a laugh line.
posted by gurple at 2:49 PM on January 25, 2012 [4 favorites]


My mother has what amounts to an assisted suicide pact with her brother. They watched both of their parents die too slowly and too painfully, and have spent the decade or so since wrestling the the guilt of selfishly trying to keep them alive.

Personally, I'm just glad that I know what she would want, if she ends up in the sort of long, agonizing decline described here.
posted by Narrative Priorities at 2:54 PM on January 25, 2012


This is a good place for a reminder for everyone to get their (and their parents) living wills worked out.

My dad wants to be left out in the snow the minute his intellect starts to slip; Mom wants to do hang on to every possible moment of life.

As the person who likely will one day make that decision for one of them, it greatly soothes my soul to have a clear legal document that covers their wishes.
posted by Tell Me No Lies at 3:00 PM on January 25, 2012 [2 favorites]


With all due respect, it absolutely was the right piece to end on a laugh line ... especially if you read the whole thing and caught the bit about his father's intrinsic sense of humor. The ending perfectly fit. And bet that sense of humor played no small part in his Dad hanging around for as long as he did. His son's essay is a wonderful testimony to their relationship, his respect for his father and to the mess that is the way society deals with elder decline and death in this country. Watched my mother-in-law basically die of starvation after a massive stroke because there was no other alternative available for her and she did not want to live her life out as a vegetable. This after she was comfortable prior to the stroke, in a very nice assisted living facility for a year thanks to a long term policy bought over 30 years ago.

We boomers are basically screwed. A number of us who are friends and retired and just barely managing to hang on to what we have while counting our blessings and praying to not have anything medically horrible happen to us too soon, seriously discuss a "senior commune" over dinner and a few bottles of wine. We'll pool our resources, buy one compound ... and hire some kindly caregivers and milk it for as long as we can with our "senses of humor" still intact. Then we all agree to make sure there is an adequate supply of pills and cases of a very good wine on hand. For when we can't take it any more.............

This was an excellent piece - thank you for posting.
posted by cdalight at 3:01 PM on January 25, 2012 [7 favorites]


My grandfather died Monday at 96. I don't have my thoughts on this fully processed yet but I would say at least the 7-8 years have been, not a waste, I guess, but not a real life either. Just being.

He was able to live one his own (with much transportation/organization support from my parents) until 2005 when he was moved into a series of care homes. In his previous life, he was an intrepid man, an adventurer, always traveling to a new place, taking photos and recording his impressions. At home, he had his ham radio to talk around the world, and proud memories of his career.

In his after life, of just being, he was often very upset to not be working or doing. He would insist he was late for work, or had to go interview for a job. It disturbed me to think of how it must feel to be an always-traveling who has come to a dead halt. To sit in a chair for seven years, with only your thoughts, however scattered those might be. I never felt it was the end his younger self would've desired.

My grandmother on the other side lived to 98, in similar conditions. I have a genuine and deep fear of ending up the same - to lose my mind but have my body keep running for years afterwards seems like a terrible joke.
posted by Squeak Attack at 3:01 PM on January 25, 2012 [1 favorite]


This is pretty much what my sisters and I have been dealing with over our mom for the last five years. She's had untreatable liver cancer for almost two years now after having survived lung cancer and breast cancer and is in the very late stages of vascular dementia. But she's she's still kicking. We've just moved her into a hospice but because she needed more care than the assisted living place was giving her but we don't know how long she's got and don't know how long you can stay in hospice. My poor sister had been going in almost every night to the care facility to clean her up and make sure that she got the right meds and ate enough since the staff didn't actually seem all that interested in actually assisting. Fortunately mom has a pension (remember those?) and lifetime health insurance from her former employer and a close friend willed her a smallish trust fund so all of her expenses are taken care of but I'm not sure how other families deal with it?

The baby boom starts to hits seventy in four years. That's going to be a whole heck of a lot of old folks and it doesn't seem like the country has any sort of plan to cope with the needs for healthcare, assisted living spaces, home nursing, nursing homes, hospice, etc.
posted by octothorpe at 3:08 PM on January 25, 2012 [1 favorite]


My mom passed away nearly 5 years ago, at the not-terribly-old age of 67. Not a day goes by that I don't wish I had another 15 years with her.

However.

Not a day goes by where I'm not beyond thankful that I will never have to watch her grow old, decrepit, delusional, etc. I won't have to face the decision of nursing home vs. assisted living, won't have to face the guilt, worry and fear associated with having someone else care for her as she slowly fades away. I am very aware of having dodged a bullet.

My 'difficult' 75 year old father is likely to prove to be a very different situation, however. Trying to save up all my good karma points in advance of that mess....
posted by East Siberian patchbelly wrangler at 3:14 PM on January 25, 2012


My grandmother nursed her own mom through her death from cancer- when my grandmother was 7 years old. She went to work at 17 to support her own grandmother in a state home. Then she took in her mother-in-law, who died in a hospital bed in my grandmother's dining room.

(ASIDE: My great-grandmother, the mother-in-law, was apparently a very religious country lady. My grandmother was a nurse who convinced a crusty old doctor to revive the house call, just for Mother B---, who was bed-ridden. At one point, my great-grandmother started arguing with the doctor, I forget about what. Or maybe with my grandmother (See? It's already happening to me.). Or maybe my grandmother and the doctor were arguing. I don't know. Anyway, at one point the doctor says, "Dammit, Mrs. B---!" To my grandmother. And Mother B--- hears this and yelps, "Oh, Jesus!" and begins crossing herself and praying. Then the doctor falls all over himself, apologizing to Mother B---. My grandmother said she never head him apologize to anyone else.)

Now my grandmother is 90. She lives in her own home with round-the-clock care (she outlived one of her children; it makes the money possible.) and me, the comic relief. My mom and dad live around the corner. My mom does the medicine and some of the HHA scheduling. The caregivers do everything else.

Sometimes I have this really deep-seated belief in this model as some sort of social justice victory, keeping people independent and in their own homes, modeling mutual aid (my grandmother gets my company, which she claims to cherish although I've met me and I'm not that great; I get a very swank and cheap living arrangement; the caregivers get paid not that much but enough I hope for the rural area we live in, and that's another whole feminist issue I ponder in the free time I've created by paying someone else to escort my grandmother to the toilet) and intergenerational support to...I don't know. The world? A lot of the time, though, it's like...jesus, I wish she could be happier. She's lonely a lot and feels useless. I keep trying to come up with different crafts or activities she could do. She arranges flowers and once we baked brownies and brought them to the fire department. We should do that more.

I think she might be happier in a nursing home or assisted living facility, because she could be so much more social, but she hated the rehab center she stayed in last year when she broke her back. We tried to get her to go to an adult day care place- I called it "the senior center"- but she cried all night the night before and wouldn't get out of bed the morning of. What do you do, do you drag an elderly lady out of bed and force her to get in the car? In a way, it's like that moment when you were a teenager and your parents told you to do your homework and you refused and you had this flash- you realized they couldn't make you do a damn thing unless they were willing to mix it up. And they weren't, and now I'm not. The only power I have is to cajole, beg and jostle.

The worst thing, I think, is this role reversal, this thing where you suddenly have an elderly child to care for and make decisions for and try to do right by. I've thought about lying to her about the day care. "Gotta get up, Grandma, time to go to the doctor!" And then we get there and oh, look! There's some nice old people playing Parchesi! Why don't you join in Grandma! But then I think, fuck, she already wears a diaper. How much dignity can you take from a person? She doesn't want to go to the damn day care. Fine. Let's watch another episode of Dr. Quinn, Medicine Woman on the Gospel Music Channel. (They just aired the one where Walt Whitman comes to Colorado Springs and everyone FRETS because he's historically suspected to be gay. It was AWESOME. I love that shit.)

I keep thinking I'm going to write about this, that's there something to say. But we all seem to have the same stories.
posted by Snarl Furillo at 3:15 PM on January 25, 2012 [18 favorites]


Before we start saying we should kill ourselves (or our loved ones) before we all reach a certain age of no return, it might also be a good idea to try to think of ways to improve quality of life in old age, and in declining states of cognition and mobility. It must be possible to improve the way things work - look at all the incredible advances in medicine that have made living to an old age possible.
posted by KokuRyu at 3:19 PM on January 25, 2012 [8 favorites]


Dad died in November, just short of his 92 birthday. Mom died 3 years ago this coming May. He lived on his own in an Independent Living facility until early October.

His last month was misery for him and my whole family. In and out of hospital, nursing homes, etc. His last days were pain, semi-coma, morphine, uncaring nursing home staff and finally a beautiful Hospice group.

We sometimes treat our pets more kindly.
posted by jgaiser at 3:27 PM on January 25, 2012 [2 favorites]


On all the killing stuff, which I strongly disagree with: Right now, I am taking an pause with my grandma after a Christmas overkill. It will end on Saturday. But in the meantime, I know my children, and my nieces, have been seeing her voluntarily and with no adult interference. They love her. They bring her sweets and they talk about their teenage issues. They enjoy having an adult they can confide in and who understands everything. I don't have to explain how she loves it. Of course there are things she doesn't get - but she remembers her own teens better than yesterday. And those day weren't so different from these...
I find it extremely important that we teach our children how the elderly have insights and wisdom we can use at all ages. We will all grow old, and I am not planning on assisted suicide at 70
posted by mumimor at 3:33 PM on January 25, 2012 [4 favorites]


It's a major plot point in Albert Brooks' novel 2030 : The Real Story of What Happens to America. With advances in health care and the discovery of the cure of cancer, more and more people live to be older and older, and the drain they cause on society and individuals causes open warfare between the generations. Articles like this one make that vision more and more plausible.
posted by crunchland at 4:00 PM on January 25, 2012 [3 favorites]


Mom is dying from an untreatable brain condition. she's only 62. way too young. she's in a temporary nursing home on medicare, and dad can't let go. she may have a year, but in the past 6 months she's come very close to the end twice. she can't speak, can't do anything, and was traumatized when she received the feeding tube. she's wants to go home, and she wants us to let her go. she's hanging on for us I think, she just doesn't see the point anymore.

i love her but she's suffering and I want that to end. I stayed with with family to help with this during a time in my life when I should have been living my own life.

dying sucks. death is the relief for those doing the dying.
posted by ninjew at 4:02 PM on January 25, 2012


My dad spent the past decade intermittently rushing back and forth to his mom because the nursing home was sure she was in her last days. It was only the past year that she finally passed on.

I find it extremely important that we teach our children how the elderly have insights and wisdom we can use at all ages. We will all grow old, and I am not planning on assisted suicide at 70

I don't think this article is attempting to dismiss the elderly as people. I think it's pointing out that one can reach a point where one's body keeps going long after the mind has.

Before we start saying we should kill ourselves (or our loved ones) before we all reach a certain age of no return, it might also be a good idea to try to think of ways to improve quality of life in old age, and in declining states of cognition and mobility. It must be possible to improve the way things work - look at all the incredible advances in medicine that have made living to an old age possible.

Crossword puzzles and strength training. Regular mental activity is associated with improved faculties when you're older. And muscle mass when you're aged is linked with all kinds of positive traits (better mobility, less falls, higher bone density, better cardiovascular health, sharper mental faculties, more independence). I read an article recently about training the elderly and how one can start training a 70-year-old, 80-year-old and still see increases in muscle mass and quality of life.
posted by schroedinger at 4:08 PM on January 25, 2012 [4 favorites]


Let's just do it like this.
posted by alex_skazat at 4:10 PM on January 25, 2012


I'm not planning on (assisted) suicide at 70, 80, or any other arbitrary age. I am strongly considering it at whatever age I cease to be able to function on my own anymore, whether that's at 95, or, gods forbid, at 65. I don't want to live like that, I don't want to be an emotional and financial burden on my loved ones, and I don't want to live out my last few days stripped of what little dignity remains, just so I could get a few more months or years on the clock.

Beliefs and philosophies differ, but to me, being relegated to living out your last few years in diapers, being spoon-fed by an anonymous nurse, unable to recognize or remember the people who used to matter in your life... That is a far worse fate than punching out on your own terms, while you still have the mental abilities to make such an important decision for yourself.

I agree that our elders are a treasure trove of experience and wisdom. I've spent a fair bit of time in the local senior centers, and have had some amazing discussions. When I was in high school, I turned in a fantastic history project full of interviews with WWI veterans. That's a paper that I'll never throw out, because those veterans are all gone now, and those first-hand accounts are a resource that we will never have again. Some elderly people are razor-sharp and incredibly spry, and I think that's great. Amazing, even. And if I am in such good shape at 80 or even 90, then no, I'm not going to punch out just because I'm getting up there in years. But when I start turning into the poor fellow slouched in the wheelchair, immobile, staring off into space with drool hanging from his mouth, that's an entirely different matter.

I can only hope I'm granted the dignity to punch my own ticket and let the curtain fall on my own terms, before I ever deteriorate to such a state. To let someone gracefully end their life with dignity is perhaps the most compassionate thing we can do.
posted by xedrik at 4:15 PM on January 25, 2012 [4 favorites]


Most depressing thread in a long time...
posted by gottabefunky at 4:22 PM on January 25, 2012 [2 favorites]


I used to do volunteer work for older folks years ago and have gone through this process a few times. The one thing that stands out is that people don't prepare, think or talk about what they're going to do in the final season. They just let it happen.

When one of my uncles was in the final stages of ALS he begged through horrible tears for us to just shoot him. That's just not possible of course, but had we talked about it sooner, something a little more civilized could have been arranged.

I'm gearing up to go through this again with my own folks in their 60s, and they are in total denial...won't even talk about it.
posted by snsranch at 4:25 PM on January 25, 2012 [2 favorites]


Yeah, this hit pretty close to home.
posted by Ritchie at 4:26 PM on January 25, 2012


The article was heart breaking and the stories that have been shared here are similarly heartbreaking. Thank you all for sharing your stories.

The article recounts my parents greatest fear, particularly my father. My parents lived in their home until they died. My mother died 6 years ago of lung cancer and although it was heartbreaking the time between diagnosis and her death was less than two months. Prior to her cancer diagnosis she had lived a slower but nice life that she enjoyed. My father died a year and a half ago in his sleep - he was 86 and just went to bed and didn't wake up. he had been living alone in the house he and my mother lived in for nearly 50 years, driving his car, going to the grocery store, watching tv, and living his very slow life.

The death of my parents was devastating to me but I am forever grateful that they lived until they died, in a way that was dignified. It is the best gift they could have received -- to end their lives in a dignified way.
posted by bluesky43 at 4:34 PM on January 25, 2012 [2 favorites]


And if I am in such good shape at 80 or even 90, then no, I'm not going to punch out just because I'm getting up there in years. But when I start turning into the poor fellow slouched in the wheelchair, immobile, staring off into space with drool hanging from his mouth, that's an entirely different matter.

To me, that's part of the problem with saying that you won't kill yourself at an arbitrary age. You can be in extremely good shape at 80 or 90, but if anything serious happens (and it often does: a fall, an accident, a stroke or heart attack), if you're taken to the hospital you may never come back out. It may be well-intentioned, but what happens to many of our elders in there amounts to being tortured until they die.

As long as there's no guarantee that your desire to die with dignity will be respected by others, there's no guarantee that you can kill yourself before you "start turning into the poor fellow slouched in the wheelchair, immobile, staring off into space with drool hanging from his mouth". That can happen in the space of an hour -- even at my age, much less 90 -- and if it does, you'll be at the "mercy" of the medical establishment, along with family who may or may not support your wishes.

I will never understand why we gladly force people to live to arbitrary ages through artificial means, yet show such revulsion at allowing them to die. Quality of life matters at least as much as quantity.
posted by vorfeed at 4:34 PM on January 25, 2012 [6 favorites]


My father died last week, and I don't think anybody really believes me when I say it's a relief. But he had vascular dementia and various physical problems and he was dying by inches. My greatest fear was that he go on and on, in and out of the hospital, for years.

It's a shock, but it's a relief, too.
posted by WorkingMyWayHome at 4:35 PM on January 25, 2012 [1 favorite]


I'm preparing for it:

1. Living will? Done
2. Medical power of attorney? Done.
3. Long term care? Done.
4. Explained to children why they have absolutely to ask about quality of life when a doctor comes to talk to them about treatment? Done.
5. Told children that if there comes a time when I am unable to take medication on my own all medication needs to stop? Done and put in writing.

What more could I do to avoid spending mindless years in a nursing home? I will truly appreciate suggestions.
posted by francesca too at 4:44 PM on January 25, 2012 [9 favorites]


But we still laugh at his great triumph, last spring, when he was able to get his Georgia driver’s license renewed despite being unable to see.

Gah; scary, not funny. We're just going to see more and more of this, and the price is going to be in young people's (especially kids') lives.
posted by threeants at 4:55 PM on January 25, 2012 [4 favorites]


My parents have, in their will, given me medical power of attorney if they're both incompetent to make those decisions themselves. (My brother is the executor of their will.) My mother explained to me that they chose me because they think I have the facility to understand and accept what doctors may have to say about long-term quality of life issues, and the ability to know which questions to ask and which answers to demand.

They're in their mid sixties and in reasonably good health, apart from my father's historical tendencies to get pulmonary embolisms (he's on warfarin) and some mild type II diabetes. They have also, individually and together, let me know what sorts of outcomes they would see as acceptable. My mother is willing to accept a fair loss of cognition and ability as long as she's not in pain or scared. My father is willing to accept a fair amount of pain and fear as long as he doesn't lose much cognition.

I dread having to make these decisions ever, although I know that there's a substantial chance that I'll have to. But I appreciate more than I can say that my parents have not just thought this through themselves, but communicated their thoughts to me. Now, while they are healthy and fully compos mentis. It's still going to be a shitty journey that I don't ever want to have to make, but at least I have a map.
posted by KathrynT at 5:07 PM on January 25, 2012 [1 favorite]


My grandpa owned and worked his own business until he was 80, broke his leg at 85 and walked to the phone to call 911, and died after open-heart surgery at 92... he was still walking for 5 miles/day a couple of weeks before. I consider him lucky, and I hope I go out as quickly... but I have no idea what my genetics are, since I'm adopted. I never get sick, though... here's hoping.
posted by Huck500 at 5:14 PM on January 25, 2012 [1 favorite]


My mother would always "joke" that she didn't want us to "put her in a nursing home," starting when my sisters and brother and I were kids. She missed thanksgiving 2010 at my sister's house because she had a bad upset stomach. The next day she reluctantly went to the emergency room, where they suspected she'd had a sort of abdominal stroke. She was already in exploratory surgery when my brothernd I and met my sister and father there and they soon brought us all into a room and explained that her intestines had to a large extent died. They said they could attempt some sort of surgery that would at best leave her hospitalized for months with dim chances for any real recovery. They recommended against it and my father agreed.

They closed her up and put her unconscious in a bed and we said goodby in a daze as they euthanized her with morphine. My father met the same end on a different floor of the same hospital a few days after being admitted last July. He'd had metastatic melanoma in his lungs but the one round of chemo he'd allowed them to give him four years ago had stopped it until Mom died. They "upped his dosage" of some synthetic opiate.

I guess my point is that hospitals here seem quite prepared to give patients a lethal dose of opiates what the time seems right.
posted by longsleeves at 5:21 PM on January 25, 2012


I have my own plan for making sure that when my intellect slips I am taken care of: I ride a motorcycle.

I ha-ha only seriously suggested this as a plan of action to my mid-sixties father over the holidays. He laughed. Then he was quiet. I've found a great deal on a Honda Benly near him... I'll send him the craigslist link after he gets back from his radiation treatment this afternoon.

All joking aside, I watched my grandfather fight Alzheimer's to the end, at age 98, right beside my father. We already know what's coming, and we both know where we don't want to be. This sort of communication sadly seems all too rare, outside of sitting beside the bed of an infirm relative.
posted by 1f2frfbf at 5:24 PM on January 25, 2012 [1 favorite]


I can't find the quote, but I'm reminded of what Lazarus Long said about not denying a man the right to press the suicide switch.
posted by mrbill at 5:40 PM on January 25, 2012 [2 favorites]


It's a major plot point in Albert Brooks' novel 2030 : The Real Story of What Happens to America.

This thread was depressing until I discovered HOLY SHIT, THERE IS AN ALBERT BROOKS NOVEL.

Made my day.
posted by KokuRyu at 5:51 PM on January 25, 2012


Take that people with loving families! Estrangement finally pays off.
posted by Garm at 6:08 PM on January 25, 2012 [2 favorites]


I guess my story is quite similar to many thousands others, but each one is a story of emotional burden, first and foremost, but also of deep financial pains and uncertainity.

My grandma conditions deteriorated rather quickly and in less then a year her body failed her, after having lived for many years in rather good health, minus the usual problems that come with aging; yett she remained lucid almost until the end, telling me about the grandpa I haven't met.

Unfortunately, she had lost her husband many years before, as he lost control of his car during a storm and crashed on a tree; there were no safety belts, back then, and it was fatal.

She was an housewife, but unlike a "wall street" trophy housewife, she has worked almost all her life, both helping his husband run his company (during and after second world war) and tending to childrens and grandchildrens.

I would have liked to meet my grandpa, who she loved deeply: he had lost his mother when he was less then a teenager, started working from the lowest rank of a factory and worked his way up to the ladder; later in his life, a worker died for a freak accident in the factory he was directing, crushed by a machine. He was deeply shocked and considered quitting altogheter, even if he had nothing to blame himself for: less then a week later he died in the car accident.

Because of her "legal status" as an housewife, she only received half of his pension; that was quite a financial hit, made worse by the fact that my grandpa's factory went bankrupt a few years before his death ; yet unlike many people who fancy being called "enterpreneurs" these days, he didn't entirely shift the risk to his employees. Actually, he sold almost everything he had got, payed as much as possible, and closed shop. Unsurprisingly, imho, when he died in the car accident, all of his then-employees came to pay homage and were in tears, or so grandma said when she want to make an example of what a man's man is about.

That failure, combined with half a pension, left her almost broke, but at least with a small apartmenet ; obivously, as the pension didn't increase as quickly as the inflation, it lost is value over the years and her situation couldn't have improved without the help of her childrens.

She has lived with us up until two years from her death, but her last year was a financial problem for all of my family to overcome, for because of the her increased needs of daycare we had first to pay somebody to help her, then had to take the emotionally hard choice (but unescapable, if one has to actually work for a living) of moving her to a retirement house which, it goes without saying, was expensive.

Yet she deserved no less, even if she didn't get as much as one would think some money could buy, but the alternatives were an array of incredibly miserable arrangements, also far away from home; the good and more expensive onet was also quite closer to home, which allowed us to routinely go to visit and check out the situation (do that, remember, always make yourself present at a retirement house, let your overlook be always felt by the staff and by the bosses, be polite but always firm and inquisitive, don't stop at the surface examine anything deeply over and over again, don't be afraid of being seen as nosy).

My future in 40 years? Our future in 40 years? I think we will be extremely lucky if we'll be able to have a fraction of what she has received, and she hasn't received much, even if she was more lucky that countless others.

Expecially young people reading this thread (but also lucky adults) should consider the following: if you never have experienced the pain of close friends of relatives, the pain that comes with sickness and the misery...if you haven't experienced yourself some serious health issues, you still have an heck of a lot to learn about life and it will be brutal, I promise, you will not be ready no matter how strong and prepared you think you are.

I can tell you that much from having gone back and forth a thousand times to my grandma's retirement home: when we grow old we struggle to remain alive for we have a deep seated self-conservation need - only a few find the strenght to commit suicide, but IMHO that's not really a strenght nor an act of courage and self-determination; it's actually an expression of deep desperation, or of an untreated unbearable phsycological and often physical pain (however, that doesn't mean law should forbid you from ultimately choosing what to do with your life.)

Once you'll have experienced a retirement home, not just as a "tourist" but in a direct and personal way, your perception of life will change considerably, but in an ironic and perverse twist of human perceptions, you still will need to be remembered as we all as humans tend to remove the bad memories we have had; the more emotional ones are likely to remain for you for live, will not necessarily haunt you, but will give you a very good idea of what no human being should EVER go throught or suffer, both physically or as an anxiety for an uncertain future.

There is no point in claiming we live in an advanced wealthy society if we can't fix that anxiety of being old, powerless and without a dime to help others pay or to pay ourselves for some good help; no matter what politicians, religious figures, powers-that-be of the economy say, one shouldn't be afraid of be old and weak.
posted by elpapacito at 6:19 PM on January 25, 2012 [6 favorites]


It must be possible to improve the way things work - look at all the incredible advances in medicine that have made living to an old age possible.

I work with doctors, and one was in my office a week or so ago, using my phone after stepping out of a nearby meeting, talking about the need for greater research into age-related problems like Alzheimer's and Parkinson's precisely because people are living longer. The cancer that would have killed you at 40 50 years ago can now be caught early and treated, and you'll live to be 85, but you might suffer from a disease in your elderly years that we don't know a whole lot about treating yet.
posted by ThePinkSuperhero at 6:45 PM on January 25, 2012 [1 favorite]


They closed her up and put her unconscious in a bed and we said goodby in a daze as they euthanized her with morphine. My father met the same end on a different floor of the same hospital a few days after being admitted last July. He'd had metastatic melanoma in his lungs but the one round of chemo he'd allowed them to give him four years ago had stopped it until Mom died. They "upped his dosage" of some synthetic opiate.

Wait, what? Where do you live? This is extremely illegal if you were in the US, even if your mom was awake, mentally aware, and specifically requesting it. Same goes for your dad.
posted by schroedinger at 7:04 PM on January 25, 2012


A lot of this could be avoided if you report to carousel for renewal.
posted by dr_dank at 7:53 PM on January 25, 2012


The name for this, I think, is rightly struldbrug
posted by the man of twists and turns at 8:14 PM on January 25, 2012 [1 favorite]


Wait, what? Where do you live?

Schroedinger, I had the same question.
posted by shoesietart at 8:17 PM on January 25, 2012


I want to die in my sleep, like my grandfather. Not screaming like the passengers in his car.

Sorry, I can never complete this sentiment without making that joke. I want to die in my sleep like my grandfather, who lived on his own until approximately six weeks before his death. He got a bladder infection that spread to his kidneys and it eventually killed him, but even when ill, he never lost his wits. He told my father he could see the US Calvary racing across the ceiling of his room, but he knew it was a hallucination. When we kids last went in to see him, a day or two before he died, he was tired, but with it. And yet we all somehow knew it was goodbye. I got to say goodbye. Then, a couple mornings later, he just didn't wake up. He was 90.

I don't what I have to do karmically to get it, but fuck me, I'll take that death, thanks.

All this morbidity aside and ignorning what will happen to my parents (because that I cannot mentally process), as a child of the baby boomers, I simply don't expect to live as long as my parents or grandparents. I expect to have to keep working until I'm 70 or 75. As long as I can keep myself going on prescription drugs, basically.
posted by maryr at 8:20 PM on January 25, 2012 [1 favorite]


I've always fancied ending it all being chased over a cliff by a mass phalanx of enraged, jealous twenty-one-year-old husbands. Sigh. Not only are they getting more difficult to recruit, but I can't run as fast as they can these days....

funny stuff aside, this is a subject that really does weigh on me. My partner (we never did marry, thank goodness!) is now in assisted living on Medicaid- she has Huntington's Disease. My own mobility ain't so good, bad back and knees- and I do look at the future with some trepidation.
posted by drhydro at 8:37 PM on January 25, 2012


I haven't thought of this before, but neither my father's immediate family nor my mother's have gone through a situation like the FPP story yet. Part of that is genetics, and part of that is simply not having the kind of medical care that is available today. But I suspect we are coming due.

I have to wonder, in the coming years, what kind of effect the Internet is going to have on quality of life and general understanding of the end stages of life in our society. That's one factor that previous generations have not had. A nation full of immortal poor people, online?
posted by zennie at 9:41 PM on January 25, 2012


I just hope we finally get some kind of sensible assisted-suicide law passed before I get old and decrepit and inherit one of the family diseases. Because I don't trust my relatives to let me die, legal papers or no.
posted by jenfullmoon at 9:50 PM on January 25, 2012


I work -- tangentially -- in the eldercare industry, and I hear stories every day from families who are watching their loved ones deteriorate. Before I started this job, I was on the fence about this, but now I can seriously say with a straight face, I am entirely in favor, 100%, of suicide booths.

Plan B is to set up something along the lines of what Sir Pterry is doing.
posted by gc at 10:07 PM on January 25, 2012 [1 favorite]


My great-grandmother - my father's grandmother - was sharp and responsive to the age of 102. She was having problems and moved close to her eldest son - my grandfather's uncle - and she passed two days after her 103rd birthday, bedridden and weak, but her last words were, "Well, I think it's time to go." She only moved because she could no longer take care of herself.

My mother's mother... when her husband died on Boxing Day 1972, she did as well. It just took her almost twenty years to do so. Her brother took care of her as long as he could (he and my grandfather were friends and came over from Germany in September 1929 for a better life - and brought her to the US and moved her into their house in 1934!), and I'd flunked out of college and was working part-time jobs, and so I spent time there, taking them to stores and cooking food for them, or bringing food (my great-uncle loved McDonald's french fries) so there was someone else to help. When my grandmother had gone to the point that she couldn't live in that house anymore even with help, my parents put her into a home and moved my great-uncle in with us.

He died two weeks later, worn out, but finally not having to keep going and take care of his sister. (My belief is that he felt he could finally rest; it's better than thinking he died because he felt he no longer had a reason to keep going. A small difference but a meaningful one.)

It took almost eighteen months for my grandmother to finish dying. She went by inches, by half-inches, losing things. Walking (unable to stand; they put her in a rolling chair). Speech (first English, then German, and then no longer making any meaningful sound at all). And slowly she left us. I would go see her every day and one day she no longer seemed to recognize me at all. I gave her some sliced-up apple, and she fumbled with it, and managed to eat it, and I went home and sat around and felt lost for a while. I kept going and she never came back. It was a blessing when her body died, but she had been gone for a long, long while. It started slow and sped up drastically when she went into that home. From what they told us, she was never unruly or difficult - she was just quiet.

I joke sometimes with friends that I want my gravestone to say 'We buried as much as we could find' (and in darker moments, a couple of things that make cat noises with all that implies), but no, when I shift to being a burden on people, I want the opportunity to go out with minimal fuss and trouble, and leave enough money behind for those left to have the kind of bar crawl that's dimly remembered.
posted by mephron at 11:09 PM on January 25, 2012 [1 favorite]


Dropping this here:
The Physician Orders for Life-Sustaining Treatment (POLST) Paradigm program is designed to improve the quality of care people receive at the end of life. It is based on effective communication of patient wishes, documentation of medical orders on a brightly colored form and a promise by health care professionals to honor these wishes.

My dad has dementia, and has lost pretty much all his non-quotidian knowledge. He thinks the memory-care facility is a hotel and he'll be able to come home soon. In a sense, we'd like that for him, but it would be hell on us; he was combative, wandering, and expected to run the finances long after he was incapable of understanding, alas, such concepts as compound interest. So he had to be "put away" for everyone's financial and personal safety. He has only recently begun watching television; he tells us any books or magazines we bring, relating to his professional interests or college, be stored at home until he can read it.

He had a health crisis a while back, but surgery fixed that. He now appears essentially healthy, and even his diabetes is under control. I expect him to outlive his long-term-care insurance now.

Because he didn't plan for much (other than getting the LTC ins), we couldn't even transfer the property so that he could go on Medicare someday. We might get that done this year, but the rentals will have to cover his nursing home costs if he survives that long.

The "hope", such as it is, is that his dementia progresses until he can no longer swallow. Apparently that's such a complex physical reaction that it breaks down before other things when the mind is being eaten away from the inside.

I'm so sorry we couldn't avoid a long, pointless non-life for him, or an enormous financial burden on my still-sharp, still-active mother. Who's exhausted.

I don't want to go like this. On the one hand, I don't have kids, so I won't burden the next generation that way. On the other hand, I won't have kids, although the nieces and nephew I helped raise will likely step in. I'm pursuing a POLST as soon as it's available in my jurisdiction. It makes a lot more sense to me than the standard 'living will' and 'advance directive' approach.
posted by dhartung at 12:05 AM on January 26, 2012


The name for this, I think, is rightly struldbrug

Thank you. Ain't no-one reads the classics none no more.

posted by No-sword at 12:21 AM on January 26, 2012


Wait, what? Where do you live? This is extremely illegal if you were in the US, even if your mom was awake, mentally aware, and specifically requesting it. Same goes for your dad.

I live in the United states. The Hospital is a University-associated hospital. They didn't call it euthenasia of course, but I was sitting at her side when the doctor increased the morphine drip and she was gone in a few minutes.

They'd opened her abdomen to confirm what they had already suspected: tissue death from oxygen starvation had affected her large and small bowel. Her intestines had died inside her. Without removing all the dead tissue she would die, but the operation was drastic and she would probably not survive it and if she did... well I don't remember all the details and it wasn't my decision.
posted by longsleeves at 1:22 AM on January 26, 2012


I recently came up with a golden business opportunity around this very issue.

The problem: By the time you would want to call it a day, you're no longer mentally competent to recognize that your at that point.

The solution: Pay someone to shoot you if you fail to call in with a safe word for three consecutive months. The thinking being that if you're alive but not capable of making the phone call (or having someone do it on your behalf), you're probably in dementia's gentle embrace.


And therein lies the problem with trying to generalize these cases.

My father-in-law, barely in his mid 60's, has a severe form of a rare dementia. He can barely function. He halluciinates and has severe paranoia. He lives in fear and pain. But, unlike Alzheimer's, his memory is still sharp. Too sharp. He'd call you. Though he'd likely forgot why he was calling you. Only that it was an important thing he needed to do.

My grandmother, on the other hand, is sharp and active. She will turn 100 this year. She is surrounded by loving family. She loves to eat and listen to music, to make jokes, to gossip. She's happy and living. Her long-term memory is perfect. She still chats about my antics as a child. Last week, she heard I was recently sick and called ME to ask how I was doing. Amazing woman. She's so busy living, she'd probably forget to call you.
posted by vacapinta at 2:33 AM on January 26, 2012 [2 favorites]


When the decision was made to take my mother in law back to her ass't living facility for hospice care after her stroke - I had a very telling conversation with the head nurse on her floor. I was dealing with an asshat covering Dr. who was refusing to up the pain meds until her regular physician returned from a weekend off. I had already discussed my mother in law's needs with her main physician, who had agreed and I naively thought - put everything in her chart.

To cut to the point - pulling a Shirley McClaine in Terms of Endearment with the covering Dr. got my MIL comfortable finally ... but the conversation I had with the nurse will remain in my memory. Basically - she was 100% for a quiet slip-off medically induced in situations such as my MIL was in. But she rightly had to say it absolutely wasn't her call. Knowing that there are Dr's out there that will under the right circumstances do what everyone thinks is the right thing if need be (given the patient has already expressed their wishes while healthy, and you have a family supportive of those wishes) is comforting to me.

This thread only re-affirms for me the need for our society to take our fearful heads out of the sand and DISCUSS THIS. Tough deal because we're talking the biggest bug-a-boo of all time: our own deaths. But my generation is about to swamp the system. It's not going to be pretty with the lack of support available for the majority.
posted by cdalight at 7:05 AM on January 26, 2012


My granny died 5 days ago at the age of 96.
It was a 7 year decline in to dementia. I said goodbye to her 6 years ago and I wasn't sure she remembered me. 5 years ago, she remembered none of her grandkids. As of 2 years ago, she started not recognizing her own kids, and her mind would be in the 30s and 40s, making references to what were probably her glory days.
We slipped away, but she was strong, ate all of her 3 daily meals in her home.

I try and put myself in her shoes and think if there would be a point I would cry mercy. If there is, I am too young to place it.
It is what it is.

She didn't want a funeral. All of her lovers, friends, and siblings have all passed away. She is the last of her generation that she knew.
My mom was at her bedside as she passed away, following a 5-year long goodbye. I just hope I can say goodbye to my parents, and make them proud while we are here together.

Oh god, I shouldn't read this stuff at work.
posted by Theta States at 7:33 AM on January 26, 2012


I don't find this thread depressing because it shows me that there are people recognizing tis issue and talking about it. Many of them only after painful necessity, of course, but better than none.

Bless all of you and your families: these are hard burdens to carry.
posted by wenestvedt at 8:54 AM on January 26, 2012 [2 favorites]


Crossword puzzles and strength training. Regular mental activity is associated with improved faculties when you're older.

The latest research seems to indicate not much correlation between brain activity (crossword puzzles) and preventing dementia/alzheimer's.

"Old age isn't a battle; old age is a massacre."

But you're right overall. Keeping good physical and mental (as if they were different) health is obviously critical for a non-miserable old age, though far from a guarantee. (That's what makes it so hard to motivate ;)

I'm officially clocking out at 80, unless I've got something reallyimportant to do, like being a primary caretaker of some children

You say that now, but what happens when your first granddaughter is born when you are age 78? Or your current partner dies and you meet another love at 72?

I don't think it's so much the age (plenty of people have had satisfying lives into their 80s and further), as the overall health, mental awareness, and, most importantly, the amount of pain and the amount of functionality loss (using the toilet, eating, walking, talking).

What's interesting to me is how many people are willing to let an elderly person in pain off themselves, but are afraid to admit it might be OK for a young person in pain to do the same.

Most depressing thread in a long time...

I really disagree here. I was watching a PBS docu-show on post-traumatic stress disorder the other day, and I think we humans suffer PTSD in en masse about death, i.e. the zebra shrugs off the lion attack, goes back to eating and never considers the possibly of death, whereas we can envision 20,000 ways we could die any day.

We consider it all the time, but don't talk about it. The most successful cure for PTSD, if I was watching correctly, was a talk-based therapy where the patient would close his/her eyes, visualize the trauma, and describe it back to the therapist in words, plus of course the feelings it brought up, etc. Over and over again. Until it doesn't become so scary, in simplest terms.

I think we do need to face the reality of our own deaths, and how we want them handled, and what we want people to do if we can't talk or respond and show no signs of returning to a functional (which of course also needs to be defined by each person) life.

So, justmy2c, but thanks for sharing.

You could die any day. Don't forget it.

/eponysterical

Oh god, I shouldn't read this stuff at work.

Well, I was fine until your post. (;_:) I, too, lost my grandma not long ago, and she lived many years past the first time she said goodbye. The strain on my mom was what broke my heart. Well, plus the fact that she died a few weeks after i had a bad accident and I had to say goodbye the last time--the real last time--over the phone.

Take care, dear.
posted by mrgrimm at 9:04 AM on January 26, 2012 [3 favorites]


For good reading, I really liked William Vollman's "Exit Strategies" (related blog post) from the Nov. 2010 Harper's (but you'll probably have to dig to find the whole thing online ...)
posted by mrgrimm at 9:09 AM on January 26, 2012


I didn't mention it in my comment above because money isn't really the issue, but then I started thinking about how it is a factor.

Both my grandfather and grandmother lived through the Depression. My grandfather, as I mentioned, was an active and employed man. My grandmother was a house-cleaner in her younger days, but not never employed since I can remember. Both had learned the lessons of the Depression well, and had scrimped and saved "large" amounts of money that they felt very proud of.

My recently-deceased grandfather's money came in part from inheritance and in part from years and years of hard work. The amount of money that my grandmother did manage to save out of her Social Security and my deceased grandfather's pension was really admirable. Both of them had dreams, at one point, of being able to pass these savings along to their children - their legacy.

Instead, the cost of care homes blew through that money like wildfire through the desert. All those years of saving, spent on years of sitting and staring at the walls. Nothing left to pass on, and their last few years funded at the mercy of the state.

If, in the future, we can't even depend on that mercy, we're all going to need massive amounts of cash, socked away well beyond our 60s and 70s. Don't enjoy your retirement! Keep on saving, because you're gonna need a cool $10,000 a month to fund your years of wall-staring.
posted by Squeak Attack at 9:14 AM on January 26, 2012 [1 favorite]


My brother and I struggle to provide for our elderly demented mother. Every day, more or less, she calls to scream and yell insults at us and everybody else. When she isn't doing that, she is depressed because nobody wants to visit her any more. "That fucking bitch, I hope she dies! Why doesn't she come take me shopping anymore?"

Life is very hard for all of us these days.
posted by LastOfHisKind at 10:41 AM on January 26, 2012


My grandfather had Parkinsons disease and spent the last several years of his life with his mental faculties intact, but trapped inside a body that he couldn't control. I remember at one point while he was in the nursing home, he made a comment to my mother about "waiting around to die", which upset her greatly. But he was right. I'm sure, if given the chance, he would have just cashed in his chips.
posted by Fleebnork at 12:05 PM on January 26, 2012


Four years ago next month, my dad - a fit, well eighty-two year-old - felt a bit off-colour in the morning, so my mum made him a cup of tea and brought it up to the bedroom. He drank some of the tea, and decided to get up. He swung his legs off the edge of the bed, stood up, died, fell down again. To all intents and purposes, he was dead before he hit the floor. Not mum's tea, it turned out his heart had catastrophically ruptured, there and then.

About six months after he had died, my mum started dying too. Her journey to the end was different to dad's, because it took her three years to get to September just gone, when that journey ended. She had a rare-ish form of leukaemia, and as a bonus a very rare and nasty thing called pyoderma gangrenosa which is linked with leukaemia and which took the hospital three months to diagnose, during which she nearly lost a leg and nearly lost her life, as her body launched a brutal and cruel war against itself. Then the large doses of steroids that she took to ward off the leukaemia teamed up with her already arthritic back and her spine basically gave out, leaving her in terrible pain that the palliative care team could not keep in check.

The first year was awful, the second year had moments where we thought we could rebuild some kind of life for her, only to have each opportunity snatched away, and then the third year was when it all sped up, and we all knew that the someday soon would be any day now, but it took a long, long time coming, and she knew it was coming. She was in hospital, she was at home, hospital, home, home with carers, hospital...she was determined to be at home if she could, the home she shared for so long with my dad, but we were terrified of her being alone - I lived a hundred miles away, and I was the closest, my brother and sister were further away. She hated the idea of a care home, and we did all we could to avoid her going into one. I invited her to come to our house, but she didn't want to leave her friends, her church (or doubtless 'be a burden', as she'd have thought of it) and then when it got bad enough for her to reconsider all that she was too unwell for it to be possible.

And with that, we started the last few months, the worst few months. I'd love to think I could be half as stoical, half as brave, but you know, I doubt it. In the last few months she was in appalling pain, and despite the best efforts of the care team they couldn't get on top of it. We had to sit by her bed, and watch her suffer.

She was a staunch Catholic so it was an unlikely possibility, but I did wonder at times whether she was going to tell me that she wanted to die and would I help with it. In her last week, she was moved to a hospice, and gradually the dosage upped, and finally, for the most part, and just for a few days, she was out of pain. Out of it completely, really, because the only way they could deal with the pain meant that she wasn't really there any more. And then she died.

I think there's an unacknowledged point at which the medication increases to a point where all involved know that very soon, very gently, it's going to take the patient over the edge. I hope that was the case, because it was the kindest thing that anyone could have done for my mum, a kindness I think she would have welcomed.

I learned so much from how mum bore her illness with grace and bravery, but in the end I learned that at the right time death is not to be avoided - quite the opposite, death is a mercy, death is a release, and death is a great kindness.

I also learned that in this one thing at least, I so want to be like my dad.
posted by reynir at 1:05 PM on January 26, 2012 [3 favorites]


I think there's an unacknowledged point at which the medication increases to a point where all involved know that very soon, very gently, it's going to take the patient over the edge.

I think that medical professionals have always understood this knowledge and used it to help terminal patients along in a compassionate way. Nowadays, though, I think there's greater acceptance that this is an okay thing to do. When we had the final care conference with my father's doctor, he made sure we understood that making my father more comfortable--which the whole family wanted to do--would mean a level of morphine that would hasten the end by suppressing his breathing somewhat. It was clear to all of us (though it took a little convincing in my mother's case) that that tradeoff was one we were willing to make.
posted by WorkingMyWayHome at 2:52 PM on January 26, 2012


It is night in this corner of the globe, and I am too tired for an extended argument, but I think it is a misunderstanding to describe palliative care as euthanasia. If you are certainly dying within days (or even weeks), and the palliative care you are given shortens the timeline by days or hours, it is not euthanasia, and describing it as such confuses the issues. I know it is common to do this, even in medical circles, and I have seen it in my own family of doctors and nurses. But it is still wrong, and it is one of the factors preventing a serious discussion of end-of-life care.
But think about it: you are suffering from an incurable disease. Your doctor has two options: (s)he can continue treating you as if you could be saved, with treatments that are painful, and in some cases harmful, or (s)he can help you suffer as little as possible during your last days, and give you the opportunity to spend them with your family and friends in a soothing environment. The second treatment may forward the time of death with a few days/hours, but pain will be minimized, and with some luck, you will be able to have some good times. The first treatment will be sinister and hopeless, and you will definitely not be able to spend time with your loved ones. 50 years ago, the first treatment wasn't even an option, and back then, no one called the second treatment assisted suicide or euthanasia. They called it care.
This article has been linked several times before, and it remains relevant. When I wrote above that bringing money into the equation is bad, I failed to explain how money always is part of the equation in several ways. Not only your personal money and insurance, but also the hospital's economic interests, and in some cases the doctors. Even though I live in a socialist country with "free" healthcare, I personally experienced, when my grandfather died in the wrong department of a hospital, that the staff said: "we need to keep our cash-cow alive". Which they did, for too long, with tremendous unnecessary suffering for my grandfather as the result. Because they can do anything with enough machines and drugs. It's just not human.
Back then, ten years ago, it was normal among doctors to call palliative care euthanasia, and when I went to the head of department to ask for an appropriate treatment, he accused me of wanting to kill my grandpa - who was very obviously dying. Since then, either the approach has changed, or I have become stronger, because I have only experienced sensitive and reasoned doctors discussing in each individual case how we could best help our loved ones; including saving my 90-yo grandma's life, because she really, really wanted to live, in spite of her terminal illness, and there was a real chance of removing the damage through surgery.
posted by mumimor at 3:38 PM on January 26, 2012 [1 favorite]


My Dad died this past fall. Long story short: very healthy and fit man had survived 2 cancers in his 70s, but had diminished immune function from that. Then his artificial hip got infected... and one lousy year and a few surgeries later, with an unbeatable case of MRSA, C-diff, and a couple of others... we agreed to "comfort measures" (as described by others upthread). He was 80.

About the only thing I can contribute is something similar to the "How Doctors die" thread, and that is that the many treatment options we have now have downsides, and sometimes those downsides, even if life-prolonging, can be worse than simply dying from the disease. Of course it's very hard to make that call, especially with loved ones clutching at every straw, every shred of hope.

I think that medicine is slowly getting better at tactfully presenting options, and of course we hope treatments will improve.

Can't repeat these enough:
- have a full will for when you and/or your spouse die. Doesn't have to be elaborate.
- have a living will that describes your wishes in these end-of life situations. From his will and from frequent discussions, we were 100% certain of my Dad's wishes, so when a choice had to be made, we made it... not easily, but without regret or self-doubt.
- if you're like us - over 50 and healthy - you won the game... congrats. The rest of life is the bonus round, and you can now live every day like it might be your last. Don't put off trips, don't pass up any opportunity for fun, start scratching off that bucket list. If you have a dream, chase it.
posted by Artful Codger at 3:52 PM on January 26, 2012 [3 favorites]


Dementia is inconvenient and annoying to everyone, not to mention expensive. But (a) everybody dies, sometimes earlier, sometimes later. That's why there's poetry :) and (b) I'm with Artful Codger - start doing some of the things you want now.

That was what often made me saddest about my mom's ten years of deterioration due to Parkinson's - not the loss of the ability to understand numbers or machinery, not the inability to move around on her own, not the hallucinations, not the depression - was that so much of her life she chose not to do what would make her happy. That was the tragedy, not that she became a person that nurses called by her first name in a chiding tone in stead of addressing her by her various honorifics (she had a Ph.D. in microbiology and an M.Div, and was an ordained Episcopal priest).

The other thing to do is to cultivate a sense of humor, and share it with others. I have an elderly, deaf, slightly demented cat (20 years old) and she's the third I've nursed to the end of life. She's a hoot. And my mother was a hoot, too. My husband and I would drive away from our visits to see my mother and he would mime her determined attempts to eat, say, a soft-shelled crab by holding it by one leg and dangling it near her mouth, or her tendency to eat dinner with her face sideways in her plate, and the two of us would laugh so hard he could barely drive.
posted by Peach at 6:56 PM on January 28, 2012 [1 favorite]


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