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As many of you know I cared for my wonderful father in my home for 5 years. I found this website during that time and I thank God that I did for it got me through those years and months until my dad died in a nursing home. He was out of his mind due to hepatic encephalopathy (brain swelling related to liver failure). The last few months of my dad's life I lost 30 lbs. I couldn't sleep. My brother and I spoke by phone at least 3 times a day. I was living a level of stress I never knew existed and at the center of all of this was my brilliant, loving, funny dad who had reverted back to being a child. And I was the mom. So many times during this period I prayed for my dad to pass away. I wanted him to be out of his misery and yes, I wanted to be out of my own misery as well. I have come to believe that feeling like that is normal. How many times have we seen a post here from an adult child caregiver who wishes their parent would just pass away?

But what got me to talk about it here was a patient I had yesterday, Mr. Smith. Mr. Smith is 89 years old, he lives alone in a large house although he only occupies 2 rooms of the house now since he can barely get around. In going over his medications I noticed he had recently been prescribed a fungicide and the first thought that popped into my head was that this guy is so old he's growing mold on his body! He doesn't have dementia but is incontinent however he refuses to wear Depends. So every couple of hours he pees in his pants and his aide has to clean him up and deal with the soiled clothing. And at 89 he pees a lot. While he can eat he can't prepare food for himself because he has no balance. He has a walker and is very unsteady on his feet. He has 24/7 care and ulcers on his bottom because he sits all day. He's educated, charming, personable, a widower with 2 grown daughters. His daughters take care of his bills and his Dr.'s appointments. He shared with me that his one daughter does more than the other daughter. His house smells like urine and 'dirty body' and is shabby and in disrepair. Is this quality of life?

How about Ms. Jones: Ms. Jones lives in a broken down trailer which is situated in an adequate neighborhood. She's been there for decades. She had maggots in her food and rats in her pipes. She's caught in the middle of a family feud between her son and son-in-law. She falls frequently but has yet to sustain a serious injury. After each fall her family insists she be taken to the hospital to get checked out. Ms. Jones complains bitterly about this each time. Ms. Jones feels that she grows weaker in the hospital and can't wait to get home to continue her exercise routine which she does faithfully everyday. Ms. Jones cries. She worries that she's going to outlive her money. Her heart is broken over this feud in her family. She's lonely but she refuses to move into Assisted Living. She insists on staying at home. Part of her family pays her bills, part of her family takes care of her other business. She doesn't drive anymore and depends upon others for her groceries and transportation to Dr.'s appointments. I can almost predict that Ms. Jones will fall any day, break a hip, and spend the rest of her life in a hospital bed until she slowly drowns in fluid from her congestive heart failure or from suffocation from pneumonia which is sure to follow such a fall.

Last we have Mr. Green: A former physician, Mr. Green has lost the use of his legs due to peripheral neuropathy. He lives with his wife in a large home. Over the years they have installed 2 stair lifts, a Hoyer lift, and mechanized pulleys that carry Mr. Green all over the house including the 2nd floor. Mr. Green sleeps downstairs in a hospital bed and his wife usually sleeps in a chair beside him. She has for years. Every once in a while she'll go upstairs and sleep a while in bed. Both Mr. and Mrs. Green are in denial about their living situation. Neither one sees a Dr. Ever. Mr. Green has a catheter and very poor eyesight. He has 24/7 care that the Green's ask to sit in another part of the house, out of the way, until needed and beckoned by intercom. Mr. Green thinks that some day, when he's gone and his house goes up for sale, his house would be a wonderful find for someone who is disabled. I didn't have the heart to tell him that any real estate agent will insist that the stair lifts and pulleys be torn down. And I knew that someday it would be his adult daughter's job to put this house on the market. Having gone through that myself I knew what she was going to be in for and wondered if it had occurred to her. By the way, the daughter visits for about 30 min. a week.

These are just 3 real example of many of the patients I see. They're holding on for dear life to what little they have left. Each one has various ailments and illnesses and each one has at least a dozen of medications they take everyday. For heart failure, diabetes, high blood pressure, etc. Do we really need to live this long?

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It's funny what you can get to be comfortable with, isn't it? My parents bickered incessantly. I found it unbearable, they didn't even seem to notice it was happening. And oh God, once they got deaf…! I can remember losing it completely once and yelling "aaaarrrrgggh!! What is the POINT of your even having a conversation? Just Stop Talking!!!" (I was that sort of teenager, I'm afraid.) I suppose now I can see the funny side of two people trying to have an argument when neither can hear what the other is saying (which added a second thread to the argument, of course - "Well DO speak up!" "I am, it's not my fault you're deaf!" "What?").Maybe that's what she misses, in some way. It would explain why she's so d*mn provoking… Sorry, it's been a rough day.

It is frustrating when people dodge medical attention, but on the other hand… My ex-partner is facing treatment for prostate cancer and I don't envy him the array of unattractive options he's been asked to consider (tests coming up this week, fingers crossed it's nothing too aggressive or advanced so he won't have to pick anything awful). The ironic stomach ulcer is familiar, too; although it makes me blackly remember my mother's total and absolute denial that there was anything wrong when I questioned her - two days before a passing GP found her collapsed in the hall of her home. Not fancying treatment I can understand. Bare-faced lying about symptoms, though… grrrrrrrr. Sorry, as I said, it's been a bad day.
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Countrymouse, he was kind of a fatalistic person; he put off getting care for a bad prostate for so long that he got uremic and complained he couldn't swallow (??) we never did figure that out, but he finally went in, got his plumbing fixed, and his kidneys even recovered fully. He gave himself an ulcer from taking aspirin constantly for stomach pain, we got through that one too. He MAY have been worried that MIL was failing and if he was in hospital no one else could care for her, but then even after she finally got into care he didn't get anything done. Theirs was not a happy marriage - there had been physical abuse on at least one, perhaps only one occasion, and they yelled at each other and undid each other's projects at home, and yet there was some kind of loyalty and love going on too. When she could not cook any more, he would go buy hoagies and bring them home for them to eat. They, especially she, fiercely resisted any outside help, and even their kids and kids-in-law were mostly outside.
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Well, now there is one good thing about dementia. You don't know you have it.
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freqflyer, I know just what you mean. My parents stayed in the neighborhood for over 65 years. My mother and I are still here. All around us are young couples having lots of babies. When I go out for a walk I see no one but people almost young enough to be my grandkids. We exchange hellos when they talk to me at all, but there is nothing to base any relationship on. We are miles apart. I wondered why my parents didn't move to a place where they could actually be part of the community. But my parents were hermits, so the people around them didn't matter. Personally I find it miserable here, not being able to hobnob with the neighbors. My mother thinks I should stay here after she dies. I just say "why?" There is nothing here for a person my age. I plan to do just what you said and look for a good retirement community.
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After reading all the comments on many different discussions it came apparent that my S/O and I plan to do things differently. Within the next 5 years, if not sooner, we plan to move to a retirement village.... at least there we can make friends with people of our generation, and I believe having friends is a gateway for a better quality of life. Plus there are community dining rooms so one can see other faces while eating. Walking trails, transportation to stores, etc.

My parents are still in their single family home and Dad said he is so bored.... they no longer drive at 92 and 96.... and I still work so I can't be around to entertain them, but I do get their groceries and take them to their doctor appointments and other errands. My parents could easily afford the best retirement village in the area but refuse to do so. That's one mistake I don't plan to make. I don't want my S/O's children to be doing what I am doing at 10:30 at night, be on senior care websites.
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VS, I'm sorry about your FIL but I also wonder if he was right. Well, clearly he felt he was right, and you were right not to argue. But what I mean is, I wonder if the risk of surgery going wrong was the whole story for his decision against it. it's as though he was given a choice of mode and decided that he'd been offered a good one - you can't get much quicker or more certain than a rupturing aortic aneurysm.

My mother went back the other evening to her "I don't know why Daddy had to go and die" theme - God I sound like a bitch, but I have sound reasons - which also brought this thread back to mind. At 71 he was much too young, and we all miss him. But at 86, as he'd be now, not allowed to smoke or drink beer or ride his motorbike - if he were still with us he'd be as miserable as sin and in a permanently terrible temper. His heart attack was very preventable and I kick myself all round the room frequently for not having seen what was almost under my nose, but then the comfort is that he is not getting too old for him to bear.

I agree with you, people must be given good information and allowed to choose for themselves. The corollary is that we must learn to be better at looking reality in the face, ready for when it's our turn to decide.
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My only caveat is that quality of life should be judged mainly by the person living it.
Doctors and nurses are notorious for underestimating/underimagining quality of life, and sometimes assuming that it is non-existent just because of age or because of the condition they see someone is in when they are sick. It can be wrong to just assume, and withhold treatment that will give people more years to their life AND more life to their years.

Fungal infections happen to all kinds of people at all ages otherwise in good health. Pneumonia and CHF don't inevitably ensue after a fall. Adults wo have pretty clearly not fractured anything and don't have concussions don't need an ER visit with every fall, necessarily. Pressure sores are preventable with cushions and weightshifting even if you sit A LOT, if you stay nourished. A well adapted house is worth it to give the person living there ease of mobility. My mom's "van" (an adapted Scion xB) would have been easier to sell without the adaptations, true, but I would not trade those dollars for the ability to get her out, SAFELY, for pizza or dinner at Applebee's after her medical appointments that we enjoyed the last year and a half of her life...

If these folks did not feel they had quality of life, they would not fight for it. I'm not saying prolong life at all costs, that would be silly. Mom wanted DNR and by the end I was grateful that she passed before things got even worse than they were - she had angina, poor vision and hearing, and was starting to lose swallowing ability, besides not being mobile. But we would have missed an awful lot of living if she had just died when she fell at home instead of 3+ years later. The lady in the HuffPost article - brave but..well, you could argue that an 87% chance of surviving surgery might beat the sure thing of the heart condition as it was, but her values included ANY real risk living as an invalid without all her faculties being a huge negative. I can respect that decision but also, like her daughter, would have missed her and could have wished she'd given it a shot. My mom possibly should have had bypass surgery when she could - she did not decide rationally, just said "not now maybe later" and later was too late; my FIL decided against repair of an abdominal aortic aneurysm, and I was oddly enough the one to point out that he was competent and could not be forced into it when BIL asked if that was possible - he took a better than 80% chance of successful surgery versus at least an 8-18% chance of a fatal rupture per year, maybe more - we never did learn how large it was - and he had the rupture. People often weigh only the risks of surgery, not the risks of no surgery. He was just 80. Too young in my opinion, because age is just a number...I think there should be no cut-off age for interventions per se, but people should have guidance and information to make the best choices that are right for them and their families.
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ive read that docs have the tools to let a person go regardless of the wishes of the family when treatment becomes futile. i cant remember the particular terminology but an example is witholding antibiotics that just arent expected to work ..
i completely understand dnr reasoning . i compare it to firing up a busted car engine one last time. a last gasp of noise and smoke , then a violent ending anyway..
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There's a powerful Huffington Post article on what modern medicine has done to interfere with dying, and what we can learn from an 84-year old woman who chose to let go gracefully.

Some are so abdamant about prolonging life, they forget all about quality of life.

Some frightening costs for prolonging life:
..."About a quarter of Medicare's $550 billion annual budget pays for medical treatment in the last year of life, and during that time, one third to one half of Medicare patients spend time in an intensive care unit, where 10 days of futile flailing can cost as much as $323,000. Overtreatment costs the U.S. health care system an estimated $158 billion to $226 billion a year."
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It worked out great - in a way - for my mom. The system spent money to keep her healthy and active, and at the end, at age 80, she walked a mile on Thursday and was dead on Friday. I'd be glad to have her, even vegetating in a NH, but she wouldn't have enjoyed that.

Yes, it is very complicated and emotional.
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Jinx, you could also point out to your mother than when she paid her insurance premiums she was placing a bet. She was betting that she would need treatment, and her insurers were betting that she wouldn't. WINNER!!! And don't let anyone come back about how everyone else has to pay for her through rising premiums: the house always profits, the insurers could control the costs better if it suited them.

200 kids, I think. But I agree, that's a lot of healthy little mouths in exchange for dragging out one person's existence more or less willy-nilly.

In the UK, the NHS distorts this whole issue beyond reasoned discussion; and has made reform a political minefield. Am I glad it's there? Too right. Do I think it's a sensible way to approach healthcare? Dunno. In some ways, yes: no one has to run around the terrifying maze that the US system seems to be, that's the major advantage. In other ways, no, the NHS is an obviously barking mad model - the fact that individuals don't pay for their care doesn't, of course, mean that the care doesn't have to be paid for; everybody pays, instead, for a creaky, inefficient, temperamental, backfiring old machine that somehow still staggers on. Do I think it's given the UK population en masse an insane sense of collective entitlement? 'Fraid so; and mea culpa. One example: my mother was given a cardiac resynchronisation device, a pace-maker with 3 leads instead of the normal 2, tricky to implant, needed the skills of a lovely surgeon at a major teaching hospital, device alone cost £15,000 we were told. We were told the price only so that mother could see it as a vote of confidence in her powers of recovery, a nicely meant reason which went down very well with her; I, meanwhile, looked over the top of my glasses at the cardiologist and he gave me an understanding look back. The question "can you recycle them?" only half-formed in my head. She had the surgery on her 88th birthday. My sister went off on one about "scarce NHS resources" and "sustainable health policy"; and I didn't fundamentally disagree - I just pointed out that I thought the debate was a separate matter, for another time, from our mother's clinically justified treatment. What was I supposed to say to the cardiologist? "Nah, you're all right, Doc, she's had her fair share. Give it to someone else." She's my mother. I persuaded her to agree to the surgery. Maybe if she'd had a different child with her the NHS would now be a bit richer. Then again, I don't think she'd be dead yet; more likely she'd be more severely ill and costing even more to keep alive.

IVF and gender reassignment surgery are both available on the NHS - it's patchy availability, but if you're a pushy patient who knows how to work the system you'll get what you want. Hugely pre-term babies are saved, in the knowledge that they will have no life free of highly intrusive medical support, and never mind the cost to the accountants, what about the cost in suffering to the child? So what are those obstetricians to do? Give up? Most NHS authorities wait a very long time indeed for the relatives of patients in a persistent vegetative state to agree to terminate life support before they'll take the case to court (partly because it's always an expensive battle that will also land them with massive negative publicity). I have yet to hear of a single person declining treatment on the grounds that he didn't think he was worth the cost to the NHS; but, then, how would one hear of it? Maybe that decision is made privately all the time by thousands upon thousands of people who do feel that enough is enough, but don't feel the need to discuss it.

I think the one thing I genuinely fear is those people who seem too willing to decide for others when enough is enough. I know Alzheimer's Disease, and its increasing prevalence, muddy the water; but I dread the possibility of society's crossing a line. I never want it to be ok to euthanise a person without that person's current, reliable, free consent. Alzheimer's patients may have lost the capacity to make a reasoned decision about continuing life, but they probably won't have lost the capacity to fear death. Kill them anyway if they made an advanced care directive twenty years before? Anyone got the stomach for that?
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My mother felt guilty that her insurance plus Medicare paid for a string of eye surgeries and a new hip for her. I told her that these were investments in preserving her independence, and worthwhile.

It does bother me to know that there are young children, either on Medicaid or "too rich" for Medicaid, who are not getting dental care, at the same time that there are elderly people in the NH who cannot speak or move or eat. $100,000 a year for custodial care for one, or $500 for dental care for 2,000 kids?

I don't know the answers, but it makes me think. Every human life is sacred, they say.....
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A slightly different question I have is how much should be paid to sustain such a low quality life. Here on the group we see sacrifice of younger people's lives and huge costs to families and the government. It is an important question about how much should be sacrificed. Should 1-2 children quit their jobs to care for a parent who can't walk and is incontinent? How will this affect the children's own retirement? Or should the elder spend all their money, then apply for Medicaid, costing $5-10K a month?

More people don't live to the age that they need such major assistance than those that do. I personally hope that I am one of these "more people." I wouldn't have the spirit to take my own life, but I don't choose to live as my parents. I do not want other people or taxpayers to pay the cost of me living just one more day. I would rather ride out of this life on a stallion instead of being carried out like a bag of bones. If I had to choose an ideal way to die it would be like John Denver -- doing what he loved to do until the plane went down. (Love John Denver)
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PS on the home mods - it is worth getting info out to the disability community via equipment exchanges, etc. because you never know about that in advance. I was able to sell my moms adapted Scion though not for what we'd put into it. But no regrets...that was QOL for us to take her places since the facility did not have a dentist and then we'd go out for a pizza or restaurant meal.
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Agree, Jinx - when my mother was on an acute stroke ward, she looked round at the other three patients in her room and said "I don't want to get like that." Don't we all fear helplessness?

My sister's ears pricked up at this, but that's another story.

So what does "like that" mean, exactly? Their primary problem, as far as I could see, was that they were alone on the ward, with no one to talk to or make them feel human. And, assuming that the other three ladies had never wanted to be "like that" either, how come they weren't trying to hurl themselves out of the window, IV drip stands, catheters, bed pans and all?

Sometimes, over the past difficult 12 months, my mother has asked if I think she's getting near time. I very firmly say "no you are not, nothing like." This is partly automatic, but mainly because I believe that when she is getting there, she won't need advice about it - she'll know. I just hope I'll have the courage not to argue with her.

If quality of life isn't a subjective value, what the hell is?
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Getting a fungicide is pretty common at any age. Tinea capitis, tinea cruris, tinea pedis (jock itch, athlete's foot) It doesn't mean he is decaying like a cadaver. Incontinence sucks but it can be managed. Life is a singular gift and worth putting up with a fair amount of crap for.

People should be the judges of their own quality of life if anyone is!
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The old lady I visited in the NH told me that she had planned to kill herself before it got "this bad." But somehow when the time came, she didn't quite want to.

I have such ambivalent feelings about my mother's death. She was frail and partially blind when she died suddenly at age 80. But she wasn't really sick, and walked a mile most days, and had activities, friends and family. She sure didn't live "too long," and I'm grateful she didn't have to suffer through years in bed.

But when I hear about someone's mother who died at 95, I do feel cheated and sad.

Well. It's not up to me. I don't control the universe. Probably just as well.
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some people are healthy at 100 so i dont think old age is the troubling issue. i think its that disease at any age is being treated to prolong an unhealthy existence. sick people would die off young if not for modern treatments and medicines.
at any rate man is very resistive to dying even with multiple, serious afflictions.
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Do we need to live so long that we can't enjoy any recognisable quality of life? You wouldn't have thought so, would you? But, clearly, things look very different when you get there.
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