Who By Very Slow Decay
July 19, 2013 7:39 AM   Subscribe

A junior doctor writes about the experience of watching the slow deaths-by-old-age of the elderly. (see also How Doctors Die).
posted by Another Fine Product From The Nonsense Factory (40 comments total) 38 users marked this as a favorite
That was hard to read. It's too real. We're in the middle of watching my mom and my FIL decay away, each along different, yet equally horrible, paths. It's definitely reinforced my determination to never be old enough to get that bad.
posted by Thorzdad at 8:03 AM on July 19, 2013 [3 favorites]

My dad sometimes says stuff like, oh, if I ever start to get dementia I'll just go camping in the winter without a sleeping bag. It made me really angry and upset when I was younger, but now I'm not so sure. Especially after watching my grandpa, his dad, die- no gnarly infections for him, just a decade of blankness punctuated by occasional bits of lucidity. (He's joking though, about the camping trip. I think.)
posted by showbiz_liz at 8:04 AM on July 19, 2013

I do at-home tech support for a lot of elderly people -- my oldest client is 98 -- and the people I see are the ones who are still in good enough condition to live on their own, manage their daily routines without requiring constant help, and even use computers, and it is *still* a tough row to hoe for them. Loss of sight, hearing, mobility, and short-term memory affect all of them to one extent or another. I am always in awe of the people I visit because they are remarkable people and even moreso in the last leg of their journey, but they have convinced me 100% that I do not want to be an "old person". Luckily, my own medical condition makes it quite likely I will not have to worry about it.
posted by briank at 8:13 AM on July 19, 2013 [1 favorite]

The How Doctors Die thing was amazing to me. I think the impetus behind many of those "You Are Not My Doctor" questions on askmetafilter is that there is a large set of facts and information that your doctor is prevented from telling you because of taboos.
posted by bukvich at 8:15 AM on July 19, 2013 [1 favorite]

(He's joking though, about the camping trip. I think.)

I dunno. I've made similar comments to my kids, after watching what dementia is doing to my mom. Deep in my gut, I really mean it. We have little say over how we die, but I don't want to go that way, and will take things into my own hands if it appears that is my lot.
posted by Thorzdad at 8:17 AM on July 19, 2013 [3 favorites]

After my maternal grandmother passed away following a very long deterioration compounded by dementia and strokes, my parents gathered my siblings and me in a room and informed us that when the time came where they felt they were on the brink of such a deterioration, they fully intended to move to a right to die state and deal with it very promptly.

Several years before that, I had spent a semester as an intern (not the medical kind; I was working with a woman who organised activities for patients and families) at a hospice, so I was already spectacularly unsentimental about prolonging life in such circumstances. But watching my grandmother die over a period of months, and how utterly wretched that was for both her and my mother, I realised what a powerful gift my parents were giving us with their decision.
posted by catch as catch can at 8:18 AM on July 19, 2013 [3 favorites]

The "How Doctors Die" is a great lesson.
posted by stbalbach at 8:27 AM on July 19, 2013

If I get to near that point, I'm going to live dangerously: pick up hitchhikers, fly kites in thunderstorms, walk through Yellowstone smothered in peanut butter. It's an outrage that medical practitioners face jail time for easing a patient out of suffering.

I have a medical issue that will eventually make my life somewhat difficult (but manageable) for a long while. But on the flip side, it also offers a relatively easy opt out simply by refusing treatment, should the need to do so ever come. This way, my doctors will not be held responsible.

I consider myself very, very lucky.
posted by mochapickle at 8:53 AM on July 19, 2013 [1 favorite]

There is so much "wisdom" about dying,death, how to do it advice etc. and yet, when the time comes--that will be the test for you. Recall: Everyone wants to go to heaven but nobody wants to die.
posted by Postroad at 9:04 AM on July 19, 2013 [1 favorite]

I'm watching my grandmother--who practically raised me--go through this right now. Dealing with it on a daily basis. And it sucks. She's alert and mostly-oriented (although she sometimes thinks I'm her son and also her lawyer), but she's terribly confused, forgetful, and paranoid, mostly-blind, and chronically short of breath.

Last night, she told me, "I want to take my life, but I don't know how. What can I take that will kill me?"

It's not the kind of sick that'll kill her if she stops taking medications, or the kind where there are medical emergencies and hospitalizations. She could linger in misery for a long time like this. We do what we can to make her comfortable and try to enrich her days, but she seems mostly to have checked out, which is heartbreaking.

I'm her healthcare proxy--her bickering daughters, my mother included, would never agree on anything--and I hope I have the strength to do right by her when the time comes. This is no way to live.
posted by uncleozzy at 9:06 AM on July 19, 2013 [6 favorites]

I am 100% willing to ice floe myself when the time comes. Anything is better than dementia. Literally fucking anything.
posted by elizardbits at 9:14 AM on July 19, 2013 [12 favorites]

How Doctors Die: Hospice care, which focuses on providing terminally ill patients with comfort and dignity rather than on futile cures, provides most people with much better final days. Amazingly, studies have found that people placed in hospice care often live longer than people with the same disease who are seeking active cures.

Amazing indeed. I had never heard this before. Yet, any public discussion of it will be drowned in denial and hysteria.
posted by ogooglebar at 9:15 AM on July 19, 2013 [2 favorites]

I am 100% willing to ice floe myself when the time comes. Anything is better than dementia. Literally fucking anything.

Watching my dad's final illness and death I'd say cancer is a close contender, but yeah.

I'll probably go out on an ice flow unless I get smashed in an accident because all the other ways are so horrible. I have a DNR for anything more complex than a band-aid but my nightmare is that it's disregarded because there is no one to care about my wishes and advocate for me if I'm unable to express them.
posted by winna at 9:20 AM on July 19, 2013 [2 favorites]

Hospice is barbaric; a cruelty for all parties involved. If it is truly the better, more humane option, I shudder to consider the alternatives. The indignities I was forced to inflict on my landlord (whom I cared for) as he approached death would have been criminal acts in any other context. And the whole torturous process did no more good for anyone than would have been accomplished by a farewell banquet and a barbiturate cocktail two months prior.

And yet even having witnessed two examples now of a terminal decline, I still could not say for certain that I would choose voluntary euthanasia for myself. There is no heaven waiting for me; death is extinction of both thought and motive, and I cannot think of any greater fear.
posted by The Confessor at 9:21 AM on July 19, 2013 [3 favorites]

And yet even having witnessed two examples now of a terminal decline, I still could not say for certain that I would choose voluntary euthanasia for myself. There is no heaven waiting for me; death is extinction of both thought and motive, and I cannot think of any greater fear.

Aside from religious taboos, this is the issue. Death is final, and to commit to it almost requires that you are already so sick and weak that you are unable to carry it through yourself (depending on circumstance). Which is why so many people do find themselves in that situation. You can go from relatively well person to immobile and helpless very quickly.

And even an "easy" death is not always easy. We know from survivors that jumping off of bridges is not peaceful. Poison is painful. The easy less-painful drugs are hard to come by outside of a Kervorkian figure or hospice situation. Death by gun leaves a gruesome corpse for your loved ones. And so on.
posted by emjaybee at 9:54 AM on July 19, 2013 [2 favorites]

Hospice is barbaric; a cruelty for all parties involved. If it is truly the better, more humane option, I shudder to consider the alternatives.

And yet we HAVE TO consider the alternatives.

Also: your experience is really different from mine and my friends who are hospice workers.

I plan to stock up on helium, personally, but my relatives on my mom's side (including my mom) feel that suicide at any time for any reason is a terrible thing and immoral, and they are happy to castigate the other half of my family for cowardice and weakness when they suicide (via meds) after multiple strokes and a little misery with no likelihood of improvement. Mom's family live for years with painful and humiliating conditions, getting more and more extreme medical care, livid all the while at the "unfairness" of their diminished quality of life. They're religious but not Catholic or pro-life or anything; I'm not sure where they got this value, but I find it horrific. (In fact, many of them are nurses or other first responders, so it's even more baffling to me.)
posted by small_ruminant at 9:59 AM on July 19, 2013 [1 favorite]

My seemingly healthy and very lucid 75-year old grandmother died a couple of years ago of a heart attack on a beach while vacationing with a friend in Jamaica.

It was shocking and created a logistical nightmare, and of course it would have been unthinkable to raise the possibility that it was a blessing. That didn't even occur to me at the time. But upon reflection, maybe it was.
posted by eugenen at 10:00 AM on July 19, 2013 [2 favorites]

I became annoyed about the "hospital poetry"-- people want to express themselves, and not all of us are Elizabeth Bishop, and writing a poem, no matter how awful, is still a worthy creative act and thus a push against the darkness-- but I'm glad I kept reading:
I work in a Catholic hospital. People here say the phrase “culture of life” a lot, as in “we need to cultivate a culture of life.” They say it almost as often as they say “patient-centered”. At my hospital orientation, a whole bunch of nuns and executives and people like that got up and told us how we had to do our part to “cultivate a culture of life.”

And now every time I hear that phrase I want to scream. 21st century American hospitals do not need to “cultivate a culture of life”! We have enough life! We have life up the wazoo! We have more life than we know what to do with! We have life far beyond the point where it becomes a sick caricature of itself! We prolong life until it becomes a sickness, an abomination, a miserable and pathetic flight from death that saps out and mocks everything that made life desirable in the first place! 21st century American hospitals need to cultivate a culture of life the same way that Newcastle needs to cultivate a culture of coal, the same way a man who is burning to death needs to cultivate a culture of fire!
Sign me up for the "overdose in a sunny park with my loved ones by my side".
posted by jokeefe at 10:00 AM on July 19, 2013 [5 favorites]

In the case of dementia, this is my not-rhetorical question:

You make a prior choice, when you are not yet deteriorating, to remove yourself from this existence when you no longer maintain mastery of your own mind. Eventually, you start to decline, but you probably fail to notice at first, because it's gradual and we are prone to denial. And now you are no longer aware enough to remember your promise to yourself; you are hazy and full of self-doubt about everything, and you can no longer take action. So now you are trapped, and you missed your opportunity to complete your plan. Is this not the most likely course of events? Would you be likely to have any moments of clarity at that point when you can realize it is the time, and still have the strength and confidence to act?
posted by BlackPebble at 10:07 AM on July 19, 2013 [6 favorites]

The Scott Alexander post was wry and witty and I enjoyed it a lot. His concluding point about a "culture of life" really resonated for me. I believe contemporary Americans have a taboo about death. Consider, in contrast, the Victorians, who romanticized it. A favorite home craft of the time was weaving the hair of departed loved ones into jewelry; people wore mourning clothes (a year's wear being typical for a widow); dead family members were posed for final photographic portraits that families cherished; and most importantly, people bathed and prepared the bodies of their deceased family members themselves, and put the bodies in their parlors for wakes and funerals. Death was intimate.

Today, when a person dies, they are quickly zipped into a body bag and whisked away for professionals to deal with. We rarely get to hold someone we love as they pass, as they are hooked up to tubes and machines. But what I feel really shows that we have a taboo about death is how little we talk about it. I've seen it my own social circles and my own family: someone says, "When I die. . ." and is immediately cut off by a horrified, "Don't say that!" Or someone finds out they have cancer, and they are inundated by comments about "beating the odds" and "staying positive" and the amazing medical cures we have today and the power of prayer. As if pious prayerful people never died. . . A person who wants to talk about how their cancer may kill them is treated as having a poor attitude, like an athlete who could still win this game if they weren't giving in to a feeling of defeat.

I think of how two of of my grandparents died. My mother's father lived near us, independently as long as he could manage it, and then moved in with my parents when he began his final decline. He took pain medication and had an oxygen tank to ease his breathing, but otherwise had no interventions, as he and my parents treated his death as inevitable in a matter-of-fact manner. He enjoyed the company of the family, and he died peacefully in his sleep.

My father's mother, in contrast, lived far from us, near my aunt, who was of the never-say-die school. The last six years of her life were a series of one painful medical intervention after another. My aunt remained convinced (or at least, spoke as if she were convinced) that the next procedure would turn everything around. I don't really know what my grandmother thought about it all, as she lost one faculty after another. What I do know is that she'd had disabling hip dysplasia her whole life, and at the age of 89, though she hadn't walked more than a few steps a day for years, and her skin was paper-fine, and she had diabetes and a host of other issues, my aunt arranged for her to have a double hip replacement. It never healed, became horribly infected, and she spent the last months of her life in a hospital in the state Alexander describes, hooked up to a feeding tube, her arms restrained because she kept trying to pull it out, while my aunt insisted that everything medically possible be done because she was sure my grandmother could recover. My aunt had to be held back from physically attacking a doctor who suggested it might be time to consider removing the feeding tube. She did successfully sock my father when he told her he thought all this intervention was futile, and accused him of wanting to kill his own mother.

When my grandmother finally died, there was no dignity to it, just a failed resuscitation.

What I see in my own family experiences is that the people who want to "focus on life" are really just in denial about the inevitability of death. But no miracle, medical or religious, is going to let any of us stay here forever.

I hope we get over our cultural taboo about death soon, because we are throwing huge amounts of money into medical interventions that can never stave off the inevitable, but can ensure it is prolonged and painful. And I definitely don't want to have that be my final experience.
posted by DrMew at 10:08 AM on July 19, 2013 [16 favorites]

The Renoroc escape contingency: Get drunk in car with engine running while listening to Best of Eagles volume Two.

If I can dial 911 as the first waves of drowsiness from carbon monoxide kick in they can find my corpse fresh .

I haven't taken a patent on it, so feel free to use it.
posted by Renoroc at 10:11 AM on July 19, 2013

Hospice is barbaric; a cruelty for all parties involved. If it is truly the better, more humane option, I shudder to consider the alternatives.

This does not match anyone's experience of hospice that I am aware of or have witnessed.
posted by Thorzdad at 10:13 AM on July 19, 2013 [14 favorites]

I thank God, in whom I don't even believe, every day that the member of my family who was dearest to me, my maternal grandmother, died the way she did. In all her 97 years of life she never experienced even a tiny drop of dementia (apparently completing every New Yorker crossword puzzle in pen helps) and suddenly she just fell ill, was taken to the hospital, and slept peacefully (not comatose and yet not responsive) for a week while her daughter and granddaughters sat by her in a private room in the hospital, holding her hand and reading her the news.

Palliative care doctors are, in fact, the most relentlessly cheerful people in the world. I feel bad that I never wrote ours a thank-you note, or even sent her a gift, as she gave us the best gift we could hope for: a peaceful passing for our loved one. Perhaps the palliative care doctors are happy because by the time the family gets to them they have accepted the inevitable (as much as anyone realistically can) and are ready to help rather than hinder the process of easing their loved one's suffering.
posted by Mooseli at 10:16 AM on July 19, 2013

This does not match anyone's experience of hospice that I am aware of or have witnessed.

I'm wondering if the OP of that comment maybe is accidentally conflating hospice with subpar nursing home care? Of course it is always possible that someone simply had/witnessed a terrible hospice experience, as with all things in the universe.
posted by elizardbits at 10:21 AM on July 19, 2013 [1 favorite]

But here is a thing... thinking about it i'm not sure I agree with scott (even though its my OP). My grandmother died 2 years ago from complications following alzheimers - by the time she was dying she couldn't name me - or any of my relatives, but she was always so happy to see my grandfather - even if she called him daddy and didn't know who he was - she didn't know his name, the year or where where was - but she knew that nice man who came to visit her. I don't know if that is life, or love or bullshit - but its very hard for me to evaluate whether that look of joy is worth the pain & suffering or not.

I never want to be in the position scott describes - but if i am alone in a hospice I hope I meet someone who - even if they don't know me when they die - might be happy to see that nice man. ( she also was a brilliant ping-pong player - at 80-something she would beat me (24) every time so long as I didn't make her move her legs from the centre of the table)
posted by Another Fine Product From The Nonsense Factory at 10:29 AM on July 19, 2013

I know MetaFilter hates Johnathan Franzen, but one of my favorite bits in The Corrections is the father who has dementia and is desperately trying to kill himself before he loses the sense to. If I were to get Alzheimer's, that would be me.

Having grown up spending lots and lots of time in nursing homes and hospice care, it's always been really difficult for me to understand why people and their families become obsessed with this mere extending of life, like the point of life is just to see how long you can go. Like it's some kind of mere endurance game.

I want to choose and choose early. And none of this quiet medication bullshit. I want to drop acid and then shoot a grip of heroin and go out in a blaze of mind-fucking glory.
posted by Lutoslawski at 10:57 AM on July 19, 2013 [1 favorite]

I'm watching my mother slowly lose her capabilities to Alzheimer's, so this is very timely.

When I was a child, I watched my grandmother go through this cycle. They wanted to put her on a feeding tube after her stroke and told my mother it would extend her life for two or three days. She lived for two years and never regained consciousness (and this was before the Quinlan case, so no DNR orders existed). I hold the proxy for my mother, and I shudder to think where things will end up with her.

I've got a great-aunt who I'm one of the closest relatives left for, and whose future I may be helping to decide. She won't move out of her house, but can't stay in without support. Recently she fell on her stairs and broke her arm. Sometimes I hope that when the time comes, she falls and breaks her neck, so she won't be dragged out of the home she loves and die of grief and terror.

My dad went from a heart attack. He fell over and was gone in an hour. I hope I go that way.
posted by immlass at 11:07 AM on July 19, 2013

Some years back, my mom died of COPD. Originally, her doctor had given her a year to eighteen months to live, and yet 9 years later she was still around. Hers was a punctuated decline. Initially not bad, but every 6-9 months, something would happen which would drop the bottom out and she'd be hospitalized and come out weaker than before. Had she not started as someone of insane strength, the doctors may have been right. As so often happened, they underestimated her.

Still, we watched as she deteriorated; first her body, then her mind. The last 6 months was torturous for me, but even more so for my sister who lived close and was the primary care taker. When, one winter, she was hospitalized again, she snapped and went into what the doctors termed as drug-induced psychosis. Basically, she became the kind of raving paranoid person she had never been. Every fear was released at once.

I went down, and stayed until the end. I was fortunate to be able to work remotely at the time. My sister and I slept in the living room with my mom — she had long since retired to the couch as it was more comfortable and I think safer — and took care of her. She entered hospice the last week, and stayed at home with a hospice nurse coming by. She went off almost all her medication that was intended to prolong her life, and only stayed on things intended to bring some modicum of comfort.

One evening, my mom pulled her oxygen tube off, and looked at my sister and I with more fear than I've ever seen in a human being before. She put it back on. I raced around, trying to reconnect with everyone who had drifted away; my mom hadn't wanted to be a burden on anyone. The next night, the woman who had helped raise me (a devout Pentecostal, and one of the few people who demonstrates everything that can be good about a Christian) sat with my mom and I. She brought my sister food, and my mom comfort and more than a few laughs.

That night my mom told her that I was gay, and that her reaction to that was why she had drifted apart. She simply looked at my mom and said "he'll always be my little boy". My mom cried; I cried. But, at that moment, she said something else. Something my mom needed to hear from someone besides my sister and I. She said "you're work here is done, you've done everything you can, and you've raised two children to be proud of." She left to tend to her grand children a few hours later.

At two o'clock in the morning, my mom looked at my sister and I and took her oxygen off for the last time. We had friends, family really, at our side, and my mom was surrounded by those who loved her more than anything. She died perhaps 15 minutes later. As I turned off the oxygen concentrator, absolute silence fell over the house for the first time in nearly a decade. Yet somehow, this emotional moment contained peace for me as well.

Our mom had given us everything. This was our gift to her. Peace, freedom from pain and fear, and the knowledge that after all that, she had meant something special to so many people. I don't believe in heaven, but I do believe we live on in the memories of those we leave behind. In the stories we tell to our friends, and our nieces and nephews. In the dreams we have. In the striving to always be someone they would be proud of.

To let someone you love so much go is the most powerful gift we have to give. I understand why others cling so strongly to every shred of hope, but it must not become a selfish act.
posted by petrilli at 11:08 AM on July 19, 2013 [15 favorites]

Best of Eagles, volume 2??

I'm sorry, that is barbaric; a cruelty for all parties involved. If it is truly the better, more humane option, I shudder to consider the alternatives.
posted by Floydd at 11:10 AM on July 19, 2013 [2 favorites]

Related to the 'How Doctors Die' article, there was a related radiolab podcast that addressed life-extension medical practices. This content from this particular episode haunted me for months.

The part that I found surprising was that if you polled people on the street on the street, they would want CPR, ventilation, etc. But if you polled physicians, 90% stated that they would not want CPR (you can see a graph of the doctor's response in radiolab podcast link) and the majority of physicians did not want to receive surgery, chemotherapy, feeding tubes,etc. They also talked gave actual numbers as to survival and outcomes for CPR: in reality, 92% die and 8% survive, and out of the 8% (with 3% having a good outcome[returning to a meaningful quality of life], 3% ending up in a vegetative state and 2% ending up in a coma like state).One contributing factor for the erroneous information was television shows;most people are portrayed as surviving,having no adverse events, and being just fine,when reality is not that way.

One part that was fascinating,too,was one of the doctors interviewed on the podcast stated that if a family member of a patient asked for information, they would provide it and give the medical care requested. However, the doctor being interviewed stated that he would give a different answer to using life extending medical care if he was specifically asked,"If this was your relative, what would you do?"
posted by Wolfster at 11:11 AM on July 19, 2013 [2 favorites]


To clarify, this was hospice care delivered at (his) home, and I was the guy who gave him his methadone every eight hours, his haloperidol every six hours, his lorazepam every two hours (ostensibly as needed, but it was always needed), and any food or thickened liquid he would accept and could tolerate.

Early on the morning before the day he died, he demanded that I help transfer him to his bedside commode, which was a routine we had established for the week or so prior. I tried to explain to him that he was weaker now than he had been, and it would be simpler and easier for him to soil his diaper and allow me to clean and change him, but he refused with a curse and moved to get up. I was forced to either assist him with the transfer, refuse to assist and watch his inevitable fall and likely injury, or attempt to restrain him by force.

I chose to assist him, though it damned near broke my back. A few hours after I got him back in bed he lapsed into a nigh-impenetrable delirium, his speech almost entirely incoherent. He raised his arms to reach for things, and it soon became clear that he was attempting to get out of bed. I knew this was now an impossibility, so I spent hours sitting in the chair next to his bed deflecting his weak attempts and keeping him confined, removing his grip from the bed's half-rail whenever he grasped it for leverage, all the while trying to explain to him that I would have helped him if I could.

Mechanically, the repeated action reminded me of refusing the affection of a persistent dog. But this was not a dog; this was a man I'd known for ten years, and despite my rocky relationship with him I cared for him as much as I am capable of doing so.

I gave him his medicine, administering base and bolus doses as liberally as the instructions from hospice would allow, hoping that each dose would be the one to send him to sleep and end the torment. He finally fell asleep at about nine o'clock that night, by which time I'd gotten perhaps seven hours of sleep in the preceding two days. I waited until ten o'clock to squirt a scheduled dose of methadone in his mouth, then stumbled over to my cot, about ten feet distant, for four hours of rest before his next scheduled dose of haloperidol.

His lung congestion woke me three hours later. The hospice nurses had told me to expect it, and gave me some liquid medication that did jack shit for it. The gurgling only stopped eight hours later, along with his breathing.
posted by The Confessor at 11:48 AM on July 19, 2013

Thank you for posting this and for everyone's comments, it's given me plenty of food for thought.
posted by Allee Katze at 12:17 PM on July 19, 2013

Yeah. I'm going to visit my mom at in-patient hospice this afternoon. I spend all the free time I have there now. We were caring for her at home, but a couple of weeks ago it became obvious that she needed 24/7 care at a level that we couldn't provide. We're lucky that the hospice runs a nursing home specifically for patients at the very end of life.

It's absolutely insane, though. She's done, she's through; she got the diagnosis of pancreatic cancer more than six months ago, and she's had the time to say her goodbyes. She's written her letters, crossed everything off her lists. She's been begging to die for weeks now. It's incredibly hard to watch her go though this; it's her ultimate nightmare. The agony, the loss of dignity, the loss of independence are everything she's feared since middle age.

The idea that a calm, quiet, peaceful death isn't available to her right now is what's barbaric. She's got maybe weeks to live, and she'll be in constant pain through all of that. She's not religious, she doesn't fear death. She's more than ready to go. Why in the hell does she have to go through this?
posted by MrVisible at 1:26 PM on July 19, 2013 [6 favorites]

Live long & prosper/Live free or die...
posted by Mack Twain at 1:54 PM on July 19, 2013

Why in the hell does she have to go through this?

Nothing to do with the medical profession according to the junior author. Apparently we only have ourselves to blame.
posted by de at 2:08 PM on July 19, 2013

My grandmother made the mistake of not having her legal house in order so she got to slowly die over six months while cancer ate away at her because one of the siblings freaked out about MURDERING MY MOTHER every time someone suggested just letting her go. Three of those months were semi-conscious: not quite out of it, but doped up enough that she might as well have been.

After that, my mom makes sure her DNRs and all that other paperwork are updated and current and my sister and I know where to find them because she is not ever going through that and she's threatened to haunt us if we put her through it.
posted by Ghostride The Whip at 2:30 PM on July 19, 2013 [2 favorites]

One thing that's really clear to me after I've been through all this, though, is why Americans between 45 and 64 are killing themselves in astonishing numbers these days. If what I've seen is all life has to offer in old age, I can hardly blame people for making an early exit while they still can.
posted by MrVisible at 2:33 PM on July 19, 2013 [2 favorites]

As some of you here on the blue and green might recall from some of my other comments, I've been busy and somewhat preoccupied in recent years (since 2006 to be precise) with elder care issues. What this has primarily involved is overall logistics; money management; bill and tax paying; and arranging, coordinating and managing medical, legal, insurance, nursing home, house clean out and sales, funeral and what-not services. The elderly beneficiaries of these efforts have been my mother and her brother, my uncle. Because my mother needs more hands-on help in the home that neither my sister nor I can provide, I have recently engaged a geriatric care management team to make sure she has the routine help she needs and to help us understand the plethora of things going on. My uncle passed away in the nursing home last year.

What has been among the most frustrating challenges is trying to get people to think about and express what their wishes are so that, if and when they cannot articulate for themselves, I have some idea of how to manage care for them. Before all of our recent follies commenced, I had tried to get my mother to give me a sense of what she would want just in case. No luck.

After all we've seen, been through and the new stage of unpleasantness my mother is currently embarking upon, the result is still nothing more than "I don't want to be stuck on a respirator permanently," which I suppose is better than nothing. But I can't even get my sister to talk about it, and she's been a front line witness to all our follies, and should know better by now (and has been listening to my periodic expression of my own wishes since before all our elder care adventures started).

So please, folks, if you expect someone to advocate on your behalf if and when it becomes necessary, it is absolutely vital that he, she or they have some idea of your values and wishes around end of life treatment, pain and quality of life. Otherwise you are effectively playing a macabre form of Russian roulette.

And for the record, I'm going to scream out into the blue (in case something happens to me; someone looking through my stuff enters my account; and recognizes me here):

Hear me roar: I am a Do-Not-Resuscitate, Palliative Care patient !!!!

(P.S. ... Morphine please. Thank you very much!)

(And no, nothing is killing me, or threatening to kill me now or in the foreseeable future, and yes, I'm "only" in my mid-50s.)
posted by cool breeze at 3:27 PM on July 19, 2013

I spent my college years working in a nursing home on the highest level of care units. My life had hardly begun, and I got real intimate with death and how hard it is to die. I mean, really hard. It almost never happens as quickly as you think.

All the time, I hear people say, "I'll find a way to off myself before that happens." I really wish people would get the reality check that this is probably not true. For most of us, death sneaks up until you have no power, no means, and no way. You probably will die in pain. You probably will take a lot longer than you would wish. This is what death is, sorry to say, and no matter how many forms you sign, you'll still have to suffer. That is death. That is human.

Perhaps it is that experience that made me a Buddhist. It's led me to acceptance. Sure, I'll sign the forms and make the living will. If I have the power to take an easy exit when I know it's time, I will. But I won't be surprised if it doesn't go my way. My main goal is to not be angry. To endure death the way Sarah did with the snow white hair, who no matter how undignified things were, smiled beatifically. She always whispered her thanks to me as her caregiver. She was okay. My only goal is to accept, when there is no other choice.

I live in northern Minnesota. Every winter, you hear of some old person who drove to the end of a deserted road and walked until they died alone of the cold. They are the lucky ones, maybe. But I think it's just as hard to die alone, in a way, as it is to die with all the horrors of modern medicine around you. I'm okay with the idea of becoming food for wolves. But it's not so easy to make that happen.
posted by RedEmma at 7:40 AM on July 20, 2013 [7 favorites]

I'm way too depressed about my dad's death and my own aging issues to read this, but I just really wanted to say that that was a brilliant headline. Absolutely brilliant.
posted by emcat8 at 10:22 PM on July 23, 2013

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