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?

Also people without these 'burdens' are very keen to tell those of us completely burnt out what we 'should' be doing, while our lives are seeping away quicker than the elderly person.... They are always folk who either swerved looking after their olds or through cirsumstance....

One of my parents elderly pals when I told her how utterly burnt out I was working 16/17 hour days with no time off for 170 days...so no time for pals /social visits/nornal work .. Anything.. I should be grateful for this opportunity to care for my (bloody awkward /borderline abusive) parent...

Her sole contribution when her parents were elderly... Taking them out to lunch twice a year when she flew in from Europe...

How on earth I didn't tell them to fuck off I don't know.. M

I was my Gran’s carer/lived with her in her last few years. She hated hospitals and was very much ‘I’ve got to 90, happy with my lot, I don’t want to die in a hospital’.

She was in hospital and after pinning down what the plan was/chances/best case scenario as she was fading fast they said doing nothing was only a 10% chance of survival but they wanted to try a feeding tube but as she had spent so long in a hospital bed she was expected to be bed bound for good.

It was quite the fight to get her out and back home. Like it was really going against the grain. I remember making sure that I had understood properly ‘you’re saying best case scenario she’ll be totally bed bound and she won’t even be able to enjoy her food/a cuppa?’

We went home, she didn’t survive but she enjoyed a Bailey’s the night before she went.

If she didn’t have me advocating for what she actually wanted I’m fairly certain she would have died in that place or lived a pretty bleak extra couple of months. Family members thought I should have refused her home to ensure she had her ‘treatment’ and couldn’t believe we were giving up.

Couldn't agree more @HoppityBun and I have said before that I don't understand why people are kept alive for over a decade longer than they should be, often in care homes.

There certainly is a lot of money to be made from keeping very old people alive, no matter how poor their quality of life, or the fact they can't feed themselves, shower themselves, have advanced dementia, and cannot go to the toilet themselves, and need carers to change their nappies. Some care homes are making a FORTUNE.

Even as little as 25 years ago this simply didn't happen. Most people would get some kind of illness or disease in their 60s, or 70s, or 80s, and would die a couple of years later.

People languishing in care homes with ZERO quality of life, often with advanced dementia, unable to feed themselves, needing nappies, barely able to talk or hear anything, and being unable to shower themselves - for 10-15 years - or even longer - NEVER used to happen.

You may find this thread very interesting

https://www.mumsnet.com/talk/elderly_parents/5525221-care-homes-make-me-think-people-never-die?page=1

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Well said. You are not making this about what you want and what you feel. It’s the very elderly people who are suffering.

I’ve seen some very elderly people survive for years on a few spoonfuls at meals, and half a dozen cups of tea daily. No meaningful exercise or intellectual stimulation.

It is baffling. They must be genetic amazons.

I understand the dilemma where the elderly are being made to live past their natural lives, for whatever reason, but I don't understand the dilemma where this is not the case.

Anyway, I wish you the best and thanks for taking the time to respond diplomatically. 💝

The thing is, and what led to my post, is that I don’t think these people, about whom I really do care and one of whom I absolutely adore, are being “kept alive“. They’re being fed, bathed, toileted and given whatever medication they need.

Unlike some posters below, with whom I have the utmost sympathy, they’re in nursing homes. Not brilliant but the best we can get hold of in the area. So it’s not a question of them being a burden to anyone, except, in at least two cases, to themselves.

And if you’re wondering why they’re in nursing homes, part of it is because of where they chose to move to when they were younger and because they had care needs that could not be met and because, in the case of one, they were quite ill for sometime and this was what social care advised. They’re extremely lucky that a combination of circumstances meant that this was possible for each. Though I should add that one of them, funny enough the oldest and most disabled, is under the impression that she’s going to be getting better and able to go home. The lack of self-awareness is extraordinary but not out of character.

It’s not a choice that I will have, that’s for sure.

I agree and have said this numerous times on threads like this. It's not about being callous but realistic. We either need to accept much higher taxes OR allow euthanasia OR see those who can pay receive excellent care while everyone else ends up in a workhouse environment. I get frustrated at the magical thinking people have on this topic. We need adult conversations about the demographic timebomb afflicting Western European countries. Ironically more and more younger people are dying because they can't get the timely medical care they need, largely because the health service is overwhelmed by very elderly people with complex medical needs.

So sorry about your dad and for you having to bear that.

I completely agree with you.

There is a point beyond which a person should not have to suffer and why we cannot afford humans the same treatment as animals at that point is beyond me.

We're in rural south west... Costs here are a good 200£ pw more than this.... I know cos I was asking over the summer and contacted many places...

Indifférent places wanted 1650 just for residential...

I do wonder where the places are that are 200£ pw less than this..?

I agree quality of life should be the priority, but these poor people hardly chose this. Moreover, there are plenty of other socially unproductive things the country spends lots of money on.

I think part of the issue is this is a very recent problem. My Nan’s parents died in their seventies. She went on to nearly 100. In a care home, recovering on numerous occasions where we all thought it was the end but really not enjoying life in the last at least five years or so. She had never experienced this with her own parents. I’ll be really interested to see what my mum’s thoughts are as she gets older, having been in that position herself and seeing and experiencing the awfulness of it. I know she won’t want it. But what is the alternative? It’s such a difficult situation.

My mother is 93 and she has zero quality of life.
doubly incontinent, pain, immobility getting worse, bad reactions to meds.

She’s in a rest home but we’re heading towards hospital care.

She has a strong Christian faith and I know is praying just to go.

I am terrified of being in this situation- I didn’t know any of my grandparents, my father was out of the picture, and aunts and uncles seemed to live happily up to their late 80s, and then go quickly with a stroke or heart attack. So this is my first experience of someone living, but not living, if you know what I mean. I think her heart is reasonably strong and this could go on for years. I wouldn’t want it for myself. And she definitely doesn’t want it.

i work in bereavement. It’s horrendous. We need to get a handle on the right to die and the right to dignity. older people are being kept alive against their wishes with zero quality of life.

It's true. It's not really benefitting anyone other than the pockets of the people right at the top of care companies who are stinking rich. People are kept alive artificially when their body is trying to die.

Modern medicine. Great isn’t it?
Cure this, treat that, screened, scanned and medicated at very old ages to within an inch of our lives. To what end?
This is the result. At great individual and societal expense. We just don’t seem to want to let people die anymore.
Difficult conversations needed.
Nurse of 37 years.

Prescription drugs keep people going like that. 😪

I do think OP that, when you are not moving or thinking much, your body can survive on very little. I also presume that, if you make it to your 90s, you must have a very healthy body. My grandmother had been bed bound for a number of years, over a decade of diagnosed dementia and several pelvis breaks in later years (one of which needed surgery - we were all convinced she wouldn't survive the general anaesthetic). At 99 she had a stroke that left her unable to swallow. She survived another 3 weeks on one spoonful of yoghurt and her mouth being moistened to keep her comfortable. I miss her, but was so relieved for her sake when her body finally let her go.

I have mourned my mother for the last four years, she was diagnosed with an terminal Neuro disease as has been unable to communicate for the last year. Bed bound, incontinent and hallucinating, she has emotional liability which means she has cried for the last three years and has not been happy for as long as I can remember, I don't know if she is in pain, I don't know if she is frightened but I do know that she is unhappy. Turned down for CHC but dependent on care due to being unable to move arms or legs or feed herself, reach for a drink, now unable to cough. Tell me why I should not pray for her not to wake up, a decade of pain and hurt for both of us. There is no pride in this life

I can understand your frustration and feeling conflicted. My nan struggled on with terrible dementia, having falls and regularly being resuscitated after slipping away (which should never have been allowed to happen but I wasn't her NOK). In the end she did pass peacefully in her sleep, so it didn't take an untreated infection or painful illness to end her life. It was such a relief and so lovely to be able to feel sad for her loss, rather than grief for having lost her while she was still with us.

My parents died in their 60s after short illnesses having been fit and healthy only months before. Whilst it would have been nice to have another 10 years with them, I think that is the way to go.

I have a high chance of getting breast cancer. If I get it in my late 60s or 70s, I think like a PP, I might refuse treatment.

you do know that DNR only relates to CPR and defib use don't you?

This, from @SquirrelSoShiny, bears a second look-
“Ironically more and more younger people are dying because they can't get the timely medical care they need, largely because the health service is overwhelmed by very elderly people with complex medical needs.”

My Mil and DF are both medical miracles, healthier now than when they were younger.
MiL’s QoL is not great, and she spends a lot of time upset and dissatisfied because she can’t do what she wants. She complains about her health and goes back and forth to the GP and the hospital, but nothing significant is ever found or resolved, really. She told us she had cancer last year, DH got very stressed and sad, appointment after appointment passed and cancer never came up again.
DF is also back and forth, but also very suspicious of medication. He’s only taking it at the moment after a telling off from a pharmacist he’d assumed would be sympathetic. He’s really resistant to organising the life he can manage, over the life he used to have. He’s angry that we aren’t all facilitating him to continue as if he was 60, but he’d need a rota of live in carers to achieve that. He’d like me to live there to pass him things, reach things, reorganise his cupboards, sort through his memorabilia, and generally wait on him hand, foot and finger.

My parents were living the life of Riley at my age. Many long holidays, no caring responsibilities. We’re organising around the needs of elderly relatives who get upset when we go on holiday, and without them.

Sorry I know that’s off topic, but suspect they will join the ranks of those discussed above and actually haven’t enjoyed life for some time.

I think it’s an extremely healthy generation. As I understand it, we won’t live as long as they have. What age that kicks in, I’m not sure.

Don't be so ridiculous. It is not an achievement. It's a horror show. It's absolute torture for these individuals. I actually hope you are rage baiting as I find it hard to believe any person could be so cruel as to willing inflict such a cruel and long lasting death on anyone. Let alone a loved one.