How long can people live like this?

[HoppityBun]

This might seem callous, but I don’t mean it to be. The thing is, I’m bewildered about how long elderly, bedbound people in their 90s can continue to exist. I’ve got several relatives in this situation. One I know wishes that she had died several years ago: I know because she says so when her children aren’t around. One of the other others, actually it’s hard to tell but she focusses on the next meal, or tea, or sweets, and seems ok. Has a few UTIs and once had a very low breathing rate but was revived. The other, seems to be ok, but at other time seems to be sad and has twice commented that they “just wanted to be all over“.

They’re all in nursing homes, all mid 90s, all bedbound and I just don’t understand how it is that they continue to survive when they are not eating much and not getting any exercise. This has been going on since 2020 for one of them and 2-4 years for the other two.

It seems extraordinary to me and, to be honest, it’s getting family members down. I suppose it’s anticipatory grief, which we’re all warned against.

I’d be interested to know because the way things are going they could all live for another five or six years it seems to me. Gradually declining and getting thinner and paler, but just sort of existing. I don’t want that for myself and I hardly recognise them when I look at them, for the people they used to be. Has anybody else come across this? It’s particularly extraordinary because they’ve lived lives that I would have thought are contrary to all we told about healthy living. Granted, none of them ever drank or smoked, but none took any exercise that I remember. Yet still they are here.

How can the body go on existing?

My grandad lived until 92 and was quite active until the last 6 months. But he was bored. He couldn’t see to read or watch TV, all his friends had died and he couldn’t easily move around as he had only a few years earlier. I think a death pill would have been ideal for him.

Yes this is really tough. Medicine has facilitated longer lives but not always good quality of life.

And, as with many medical/scientific advancements, we have failed to think through and plan for all possible outcomes: better healthcare (good); the high financial and emotional price of enabling longer but often very poor quality lives (bad).

We want or expect people to die “naturally” but throw the kitchen sink at getting in the way of that - and rightly so in many cases, but as others note there is something horrific about the poor, withered, miserable lives that can reluctantly remain against their own will.

Because who could decide what constitutes adequate quality of life? There are so many different people and situations. Refusing antibiotics and DNRs are helpful, but like others say who could see someone confused and in pain and not want to alleviate it?

This question always makes me think of the film Midsommar: about a (fictional) society where people willingly commit suicide at a certain old age, to ensure the community can continue and prosper. It’s a horror film with lots of other shocking things in it. But it makes its point: what awful, unusual things might be necessary for the greater good?

As a society we seem pretty good at doing and normalising awful and unusual things not for the greater good, sadly!

The more doctors prod, the more they find and old age becomes a revolving door of appointments. My dad died of dementia 13 years ago, the last week of which was spent semi- conscious in a care home bed unable to eat or drink. He would have hated that had he known.
My partner is currently at the in-laws flat waiting for the second ambulance of the day after yet another FIL fall. They cannot get him off the floor and there's a strong smell of urine in the flat. They won't consider getting a cleaner or taxis, even though they're wealthy, partly from pride and partly because their generation don't like spending money (except on cruises). In the meantime, the phone calls keep coming.... He'll probably spend a couple of days receiving corridor care again. This isn't working.

I agree about the revolving door of appointments. Once you hit 60, they're constantly on at you, shingles vaccine, flu jab, covid jab, shit on a stick test, (for bowel cancer) breast-screening, multiple blood tests, wanting to shove tubes up your arse and down your throat, doing MOTs on people, doing medicine reviews, doing asthma reviews (where they teach people who have been asthmatic for 20 years how to use an inhaler,)🙄and just generally wanting to poke and prod and cut bits away outside and inside of you to do 'biopsies' etc etc etc...

If I was diagnosed with cancer now, (late 50s) I would not have any treatment/chemo/radiotherapy. It would probably do me more harm than the cancer! I have seen people wrecked by cancer treatment, with their lives upended, barely able to put one foot in front of the other, and unable to do anything, (even go out alone,) for 2-3 years, only to die anyway - just a year later than they would have died, if they had had no treatment.

It feels really alien to me that people can exist for so long like that (probably because half my relatives seem to die relatively young whilst the other half are sprightly and active into their 90's before a quick downturn. Despite having a really large family, I've never known someone be in a care home).

Surely quality should be considered just as much as quantity of life. It seems desperately sad to think of people confined to bed and actively wishing for death for a prolonged period of time.

oh it’s awfully sad. I have a friend who cares for her 95 year old mother who luckily lives on the same street. She is over there at least 3 times a day looking after her because bless her she wants to to her best and not have her mother in a home. I worry so much about my friend as she has been doing this for around ten years.
on the other hand my grandmother died at 81. We were incredibly shocked as she was fully independent in her own home. She travelled abroad, regularly to shops on bus, went to the pub! She just died one day sitting on the sofa watching tv. No warning signs. We were all blindsided because she was so active and such a character but it’s certainly how I would prefer to go

Yeah, it's weird that we let people suffer because we can't write a proper policy for when it's okay. How hard can that even be?

My Mil is well over 90 and wouldn’t want to die at all. There’s a lot of generalisation on this thread.And end of life is not for the convenience of relatives.

You really wouldn’t have any treatment for cancer, you’d leave a dodgy mole for example?

Well the alternative is assisted dying. Yet a very recent vote in parliament said a resounding no. So there’s not a lot anyone can do about it. What would you suggest? Are you advocating assisted dying?

Indeed. My mother is 90 and still has a good quality of life. However, fibe years ago she was diagnosed with acute aortic stenosis. This was resolved with a TAVI. Withoit the TAVI she would likely have died from heart failure by now.

Just after the TAVI she developed frequent dizzy spells. She then was diagnosed with a skin cancer near her nose, surgically removed and needing 70 stitches with a perfect and unnoticeable outcome. Then a lesion on her ear which was removed almost to the margin.

The dizzy spells turn out to arise from a mengioma in the frontal cortex and there are basal ganglia infarcts. The left soded tremor started about two years ago and she's now been diagnosed woth Parkinsons. She is wrought with anxiety about thw fitire and her dimonishment.

She wouldn't manage on her own and step does all the shopping and cooking. However, she is still smart, on the ball and enjoys, with step, a social life.

20 years ago the TAVI wouldn't have been available and leading into it we thought she was marvellously healthy.

I'm glad she got over the heart issue but ot's been a roller coaster and who knows what's ahead. It's likely to be grim. If step keels over (not unlikely) she won't be able to live alone. One lives on the hope that a massive stroke might take her swiftly but it's a wicked hope.

No one wants to die in physical or emotional pain. But we have to die of something. Antibiotics can be refused, but strong painkillers can be perscribed instead. A good, experienced (older) doctor understands that their job is to perscribe to make the patient comfortable. And if the side effect of that is decreased respiration and sedation that's acceptable.

Surely the problem is they don't want to live like this either.

My grandma didn't, her last two years were awful, just losing all pleasures, unable to eat or swallow proper food, losing sight, losing ability to read, watch TV, chat or hear other people, it's just awful and she said she's rather not bother, but you can't will yourself to die, even if you don't want to live like that.

I pray something carries me off before I get to that very last stage, the thought of being bed bound, incontinent and not able to enjoy simple pleasures of food, company and going out, no thanks.

Unfortunately I'm not sure assisted dying as it was proposed would help as you are not terminally ill in the obvious sense. I hope we can shuffle off though by the time I get there. Not having antibiotics/refusing to go to hospital is ok if you have good palliative/nursing care to cope with pain.

Very elderly, chairbound people are not having a "natural life process". Usually cancer, heart attack or pneumonia will have seen them off. I know an 80yr old with early stage dementia who was given a pacemaker.
Modern medicine is amazing but sometimes it seems to go too far.

My 93yo granny is like this and it’s awful. She tells my dad she doesn’t want to be here any more every time he visits her in her home, she is almost entirely bedbound, does nothing, enjoys nothing, but lingers on. When my mum died a few years ago, she kept saying ‘It should have been me’. It’s horrible. It will be a relief when she goes. For her as much as anyone.

I work in care .. you wouldn’t treat animals how humans treat other humans .. how do we get it so wrong 😢

I think there is sometimes a bit of a plunge in quality of life, not always, but my Grandma looked great at 91, 92, mobile, able to laugh, chat, socialise a bit, slow moving but still moving, able to be part of life.

Once you are bed bound, having pressure sores, incontinent and so on, as well as losing sight/hearing, cognitive decline, any of these can tip what was a very enjoyable old age into something to be endured.

It's fab if your mum still enjoys living her life, I think what's being discussed here is a step on from that which is where it's just not possible to enjoy life in quite the same way, I would find being doubly incontinent and bedbound pretty unbearable, and having to have carers clean and shower me, very unpleasant; I'd also find not being able to speak or communicate easily very difficult which is what happened to my gran, having been chatty up til her early 90s.

Have a look at Hospice Nurse Julie on Youtube.

One of her videos is entitled I'm a Hospice Nurse. Here's what I'd do if I got dementia and is an eye opening prompt to really plan end of life care before losing capacity. This includes making choices about being intubated, tube fed, treated for infections, etc. as well as resuscitation.

Watching it has given me a lot to think about.

I don't think anyone is talking about your MiL.

I love Hospice Nurse Julie, so much fantastic information on end of life care and she's just such a lovely person. We could all do with Hospice Nurse Julie towards the end. I'll check out her videos on decision-making.

@HoppityBun are they on a lot of medications that will keep them going to some extent

Exactly this!! We keep people alive so long (to work) and then forget that we were never meant to be that old in the first place.

Fair sensitivity warning ⚠️

Are we really supposed to look like we are half corpses already by the time we go in the ground?? Doubtful.

Doing the "right" thing or not doesn't seem to make that much difference. Some people far younger than that have severe health issues and are in agony, while their lifestyles were far better than some older people who seem healthy. Luck has a lot to do with it. And if more people thought that, we might live in a country which allowed euthanasia.
Also remember that if you're talking 90 year olds, the food they ate (probably) had more nutrients, and they had far less sugar, and moved much more in their youth than most of us. Surprises me you say they never smoked or drank, but then, they'd have been less likely to binge drink than, say, people born in the eighties.

I disagree. But the future generation will, who have signed houses and assets over to their kids but will expect care from the state…

It's pretty simple - every ailment treated aggressively with antibiotics (and screw the rest of us who need them to work in years to come), vaxxed to the hilt, calorie-dense purees and drinks spooned in. And long-term use of other drugs for HBP, statins etc. And doctors who are terrified to make what used to be compassionate decisions about letting nature take its course, and who need to leave a paper trail showing that they have done everything possible to keep that person alive.