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?

The thing is, I am 66. My great grandparemts died in their 80s when I was a child, 6 or 7. My great grandma had a breast removed just before I was born. The C word was never discussed. When I was about 5 she became unwell and was unable to get out of her bed for the last six months, becomong weaker. The family dr visited but there was no mention of hospital. Family cared for her. It probably was cancer but quite swift and was regarded as old age.

Great grandad got a cough and cold about.two years later, the cough lodged on his chest and he died of pneumonia within a few days of going to hospital.

They were 84 and 86.

Fast forward to my gran and she went the whole way with alzheimers, starting at about 72. Her lasy five years were spent in a geristric MH unit, state funded and bloody marvellous. Towards the end she hsd forgotten how to eat, how to swallow, she was 4.5 stone and on a family funded vibrating bed to prevent bed sores. There were two reasons for this: my mother and grandad visited daily, feeding her until she couldn't swallow, helping her drink from a sippy cup, mother did her washing and her hair to keep her presentable. Had they not done that, I've no doubt she'd have died two or three years earlier. The other reason: she was fundamentally fit and strong and had no underlying disease.

I do think much of the issue is that we now treat all of the illnesses we never used to and that people simply don't have the information or the agency to consider the data and make informed choices about what treatments to accept. I have no doubt whatsoever, that if mother, 90, develops a cancer, she will want the chemo, etc. We can't have doctors making that decision but few are able to make an informed decision about quality of life over quantity.

I have decided that if I get.to 80, I'm going to take-up smoking again and have three glasses of wine a day.

We need to focus less on cure and more on comfort and pain relief.

In my DM’s dementia-only care home, which I have to say was very good, I saw more than once residents being coaxed and badgered to eat and drink when they no longer wanted to. I know it was done with the best of intentions, but to me it was distressing to see the poor old things whimpering and repeatedly turning their heads away.

I vowed that there would be so such thing for my DM, already over 90, and had already agreed with staff that there would be no hospital* - in any case a terrible place for anyone with dementia, when they can’t understand what is going on or why - and no ‘striving to keep alive’.

*Except in the case of e.g. a 2nd broken hip - she’d already survived one at over 90, and went on to 97, but her very frail appearance belied the fact that she evidently possessed the general constitution of a rhinoceros.

But a lot of them don't want to live their lives out. Who on earth would want to be kept alive when they don't even recognise or remember their own children/grandchildren, need to be spoon fed or even tube fed and are doubly incontinent. They can't walk, talk, read, watch TV or have any sort of conversation. Their quality of life is zero/nil.

Would you like to be kept alive in that situation? I certainly would not.

I used to work in a centre where elderly people would be dropped off for lunch, catch up with friends.
One lovely man I still remember vividly now, he had lost his wife, his sight, he couldn’t eat much without having to go to the toilet but would quite often soil himself because due to mobility issues he could t get their fast enough.
He told me that when he woke up each morning he always had a little cry because he had woken up again, to live a day in darkness, no visitors and the struggle to keep himself neat and clean once carers had left.
He was in his younger days (from the photos he showed) always immaculately dressed, an avid walker, loved socialising, parties and dancing.
He was late 90’s when he died but he always said that he had wished someone would put him out of his misery.

But the ‘pause’ can go on many years to the detriment of our husbands, children, jobs, mental and physical health in the prime of our lives when they’ve had the best of theirs. It’s natural to feel put out.
It is a burden. There’s no denying it. I’d recognise myself as a burden in that state too.
We choose to have children. They owe us nothing.
At the very least we need to seriously consider this shift modern medicine has allowed to promote frail, demented, poor quality life at all costs.

IS private equity firms are buying up care homes.

It is awful and cruel to see. Some of my grandparents lived to late 90s with very poor quality of life. My grandma was in a home with dementia for over a decade, no communication, just a shell of herself. Lived to 101.

Now my mum is 89 with dementia and I am dreading a prolonged, miserable life for her. She already finds much less joy in life and can do very little (due to poor vision too) and all the things that made her her are slipping away. She can occasionally have a conversation but can't remember much recent, and mostly talks about her childhood, but she doesn't make enough sense for anyone to join in. She doesn't even have the comfort of memories to look back on. She has lost her love of music, sadly, which used to be a great source of joy to her. I already feel like I've lost her, yet we're looking after her - it's very cruel. It's destroying my dad who looks after her.

I don't know what the answer is but I agree OP. We all expect our parents to die before us but some circumstances can be extremely painful.

I have seen people literally rotting away in beds. The patient and their families distraught for months and even years.
I blame the medical establishment. They are too macho in their approach to "We can cure everything". They reduce a patient to a series of conditions, chest infection, leg ulcers, hypertension, kidney failure, and treat each individually, Instead of looking at what is best for the whole person and giving them the chance to decline.
Sorry to disparage a whole profession but sometimes I think the only thing that medics and pharmacists have in their toolkit is a selection of drugs, so they feel like they have to provide something.
IME, Nurses, social workers, carers, OTs, have the time and skillset, to see the bigger picture and they treat the patient and the family with more compassion.
We let out 17 year old dog leave with dignity, we had to watch my poor 90 year old mother, suffer and die in absolute agony for months. Each day begging to be "let go".

We can't have assisted dying. I don't want to feel obliged to shuffle off this mortal coil when society deems I'm no longer useful.

Dh and I have both added paragraphs to our Health and Welfare Ps of A that go roughly, ‘If I should develop dementia, or any other condition where I can no longer both care for myself, and speak (with full mental capacity) for myself, then I emphatically do not want any life saving or life-prolonging treatment. I ask for palliative care only.’

Assisted dying would give people a CHOICE of when to die. It would give people autonomy over the timing of their death.

My great grandmother died at 80 after a short illness, one day she seemed fine, then she was in hospital and died shortly afterwards. She wasn't in a care home, she was independent up until her last few days. I'd much rather go like that than be bed bound for years.

But in practice it isn't working out like that is it?

Look at what is happening in countries that have adopted it. If it was truly as you said then I would have no arguments against it.

It has already been abused. And I have seen no compelling ideas capable of preventing that abuse. So in that case I don't want the state to legalise killing a human being in any circumstances.

Same here. The thought of living like that terrifies me. I'd rather die, that doesn't scare me as much. (It scares me more now I have DS, but as long as I live long enough to get him to adulthood, I think he'll be okay.)

Plenty of people do want it, there is a definite need for it.

In many cases its not as you say a natural end of life process. I worked for many years in social care and some very frail poorly residents declined to eat. They were encouraged to eat soft sweet food and given calorie laden drinks like ensure and Calshots. In some cases they lasted a very long time. Personally I think it's cruel. Most were bed bound and had to be regularly repositioned.

the last time I saw my smart funny witty feisty grandmother, she was in a chair unable to recognise anyone being spoonfed some watery porridge by a carer.
She had vascular dementia and her last years were full of terror and anxiety.
She had a fall, and my stupid uncle pressed for her to have a hip operation. She would never have consented to that . The anaesthetic destroyed the rest of her memory.

It was like watching a form of torture...

You really don't have a clue do you because you've clearly had the luxury of not having to deal with the issues some of us have!
My mum has had poor mental health my whole life, used to give my brother and violent beatings as kids for no real reason. Her doctors 46 years ago (the year I was born) thought it clever to get her on diazepam and lorazepams (despite having a baby and a 5 year old to be responsible for whilst our dad was working) and she's still hooked on those drugs to this day.

My dad died 10 years ago, my mum is now 75 and her mental health issues have got worse and worse, I believe she has Borderline personality disorder but her doctors won't talk to me. She likes threatening suicide, even threatening to overdose herself and her dog to the ambulance crew and police after she put suicide note through my brother's door - they did nothing with her because she refused to go anywhere.

She treats me, my brother and our aunt appallingly every time her mental health crashes, she had a phase earlier this year of guzzling a bottle of wine a day with her tablets in the hope she wouldn't wake up, she'd end up in a stupor and not answer phone to my aunt and as my brother is the only one living near here he would have to go and do a "death check". She stopped the wine when it just made her very ill. She has made my brother ill at times with the stress of her and her volatility!

She isn't celebrating and neither are we, we'd rather she just ends it if that's what she wants! She wanted me to sign a DNR for her, I refused as it's not legal for me to be signing it as a daughter and beneficiary if she dies too herself afterwards!

Yes I hear you OP. My mil is blind, completely demented, non verbal now, doubly incontinent. No quality of life and lies in a bed moaning all day. Care home do a great job but there is nothing there. Earlier in her dementia journey she kept asking for an "off switch" and please switch her off. It's heartbreaking. There is no answer.

Money is a problem.

At some point my DM is going to run out of money. Her CH fees are burning through her modest estate. When that happens she will likely moved to a cheaper, state funded CH.

This how I see it playing out:

DM's care will be less attentive. Infections will become more common. CH wont want to deal with this so DM will be shipped off to hospital. There she will spend hours in A&E, confused, terrified, in soiled pad and clothes. Maybe she will be admitted, maybe she will be sent back to the CH. Only for the whole thing to be repeated time and again until the stress of it finally kills her.

This is what continuing medical treatment can lead to. No privacy, no dignity, no comfort.

My FIL had advanced dementia,had had a fall and was in the local cottage hospital. He kept developing sepsis and everytime he did he was blue lighted to Burton hospital where he would be put on a drip and filled with antibiotics. The drip had to be bandaged to his arm because he kept ripping it out . He had no idea what was happening or where he was. My husband spoke to the consultant about why they kept doing invasive treatment and was told "We are a hospital. If you come in with a treatable condition we have to treat it even if that appears cruel". In the end the family agreed father would remain at the cottage hospital when the next crisis occurred,they would be called and dad would be allowed to die. With both my FIL and my own father we found its actually quite hard to just die unless something sudden absolutely overwhelms you. Lower grade things will be dealt with so they never develop into pneumonia or bronchitis which used to be called ' the old man's friend' because they'd quietly see you out. Now you just go on and on.

I have noticed that my the parents of my friends who are living at home do get a lot more UTI’s than my DM in a nursing home. This is something I haven’t thought about before.

It is a disgrace. People are kept alive by medicine. But it is no life. Slumped in a wheelchair, all day everyday. It is unkind. It is undignified. And wicked.

People can be moved from a hospital bed and someone who did not know you decide you have to be in a care home. A sterile box. Not your own home. Never to see your things ever again. Never have your usual routine ever again. Never to sit in your own furniture again. Never sleep in your own bed again. Unlike the brochure will no doubt state, you will have to get up when it suits the care staff, eat when it suits them, go to bed likewise. Even have TV on you would never watch.

There is a cruelty to all of it.
I once heard of a woman who had late stage dementia, so severe, was resuscitated after having a massive heart attack. I can only assume the medical staff were terrified of being sued if not.

Medicine keeps people alive.
Medicine needs to work out a balance between when it is time to let someone go with dignity and when you do intervene.

It hasn’t yet.

to me little seems to have improved and in 2 instances the final years have been so miserable for two i happen to know
first years ago my Nanna was cared for by family members; she seemed to be passed from one member of the family who cared for her until they were exhausted and then moved on again, she was never the most agreeable lady old age did not improve that. she had ulcers bedsores dementia infections it was a miserable life for her and everyone involved.
a few years ago my ex's father was left alone when his mother died. after an horrific fall he had numerous injuries including a badly broken hip which did not heal properly, from that day on he was bed bound. four years he lay in bed with increasingly bad joint problems, incontinence, UTI's dementia etc. we had 9 occasions when we were called to the home or hospital to say he was dying but somehow he rallied round. that four years aged me it was a roller coaster of never knowing what the next phone call would bring thankfully he slipped away peacefully just after supper one night

My father had Parkinsons. He was desperate to die but too afraid to commit suicide in case any attempt failed and he was left in a worse state than he already but still not dead. It was utterly cruel to watch.