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?

Thank you for this @Carandache18 I don't blame you for refusing all screenings. I have a friend who is 63, who has had much of what I named in the thread you quoted - all the tests and screenings and all that jazz... And when she had a tiny bit of blood in her poo, (after doing a FIT test, to check for bowel cancer,) the first place the doctors mind went to was BOWEL CANCER. YOU MAY HAVE BOWEL CANCER! Even though, in 97% of cases, it is NOT bowel cancer!

Scared the living shit out of her, and ruined what should have been a lovely joint 60th birthday celebration holiday with her husband, because she was told she needs a colonoscopy, so they can see if she has cancer, and if they see any little polyps they will cut them out.

In the end she refused the colonoscopy as she was scared it may do more harm than good, and was genuinely terrified of it, and insisted on an MRI scan. They did this, and there was absolutely nothing wrong with her. Probably just strained a bit when she had a poo, and also she had a bit of a thing for food with chillis for a few months, and even they can cause a little blood in the poo.

When she suggested to the person she first saw when she spoke to the colorectal department, (who did a bit of an assessment before she saw the consultant,) she said it could possibly just be chillis. The woman dismissed her immediately and said 'I have NEVER heard of chillis causing blood in the poo. It could be something very serious.' Put the fear of God into her. For nothing. My friend said she will never do another FIT test again. She also refuses to go to a breast screening.

And this woman was wrong. Chillis CAN cause blood in your poo. My friend reckons that's what it was. She is never doing another FIT test though. I don't think I will either. I have also never had breast screening, and I never will. And I am not explaining why, or being told off for it by anyone.

!

It is hideous for everyone involved. A solution? I remember wishing there were a pill I could give my lovely dad, just to release him from the nightmare. Were it not for modern science, he would have died “naturally” a few years before his true death. Those last few years were bad. But the long final stretch on his death bed (that’s the only way to describe it) was really traumatic. This once bright and merry man, who had spoken half a dozen languages, was blind and couldn’t speak at all.

Do you have experience of this? I do. Mil thankfully didn't live long after getting to the wishing to die stage. It truly was a blessing.

You don't have any experience of the hell some people go through with elderly parents do you! Your comment is utterly disgusting! You think every elderly parent is a happy little sweetie that's a ray of sunshine and that as kids we are scumbags that just want their money?

My 75 year old mother has had mental health issues since having her first child at 21, in the last ten years since our dad died she has put my brother and I and our aunt through hell! She has threatened suicide countless times, she has been on Diazepams and lorazepams for 46 years and uses them as a weapon! She even tried to get me to sign a DNR which would have dropped me right in it as a will beneficiary if she'd topped herself after I signed it. She's very mentally abusive, used to be very violent to us when we were kids, she's narcissistic. And her behaviour is getting worse because her metabolism is slowing and not processing the drugs in her system quick enough so she's clumsy and more delusional!
You have no right to judge people in such a horrible way! I'm not going to stop her killing herself, I'm tired of threats and wish she'd just do it! Ever had your mother tell you that she's left you money on the mantle piece to have her dog put to sleep once we find her dead?

I don't want to linger on like this when I am elderly.

Once I lose my independence and my mind starts to go I would much prefer ending things with dignity.

I don't think that keeping people alive at all cost once your quality of life is gone is how it should be.

But people/politicians don't seem to be willing to have a mature debate about choosing assisted dying.

And of course we also need to be willing to fund social care and elderly care properly so they elderly people don't end up having cared for by exhausted, unpaid female family members (as it is always almost women who are expected to do this and 'sacrifice' their own lives).

What I'm specifically and massively worried about is being stuck for endless years in the situations I see some of my elderly relatives being in. I'm a hugely self-sufficient and private person. I loathe the thought of ending up in bed most of the day and relying on anyone to dress me, shower me and wipe my arse. I dread reaching a point where I can no longer do the hobbies and activities I enjoy. I'm particularly scared of losing my sense of self, my memories, my ability to recognise my loved ones.

I don't want the option of assisted dying because I want my ERs to die. I want the option of assisted dying so that I can make the choice to check out on my terms if/when I get to that position.

My great-grandma is alive and she is 103. She's outlived her husband (by 20 years now), my dad, and all of her friends. She's miserable and regularly says she doesn't want to be here, despite being in an expensive and very nice care home (which is bankrupting the entire family as she ran out of her own money years ago but that's another story). My mum, her oldest daughter, hates seeing her like that. It's really sad.

Unfortunately you cannot choose how you go

Do you know any very old people? Have you seen someone close to you through their final years? Long, slow end of life is awful for all involved. My neighbour regularly tells me she wants to die.

The assisted dying bill was only supposed to apply to those with under six months to live, so it would not have affected the kind of people you and the OP are talking about. Commenters like you, and many others who appear on threads like these, are also, probably unwittingly, making a pretty good case for why the bill did not pass, since you are already advocating for it to go well past its original remit before it has even been passed. The slippery slope argument has never been more evident than in discussions of assisted dying.
As for your assertion that nobody who opposed the assisted dying bill could ever have seen a loved one suffer, this is a demonstrably false statement. Both of my parents died of slow, painful illnesses. However, neither of them were in favour of assisted dying. My father, like myself, was disabled all his life. Both of us lived, mostly happy lives, with the sort of conditions I have seen people claim would make life not worth living and yet our lives were very much worth living. My problem with the assisted dying bill is, as exemplified by your post, with people already agitating for it to be extended beyond the terminally ill, it will only be a matter of time before disabled people are allowed, possibly encouraged, to 'put themselves out of their misery'. After all, it is far cheaper to kill someone than actually provide good quality care so it is not far-fetched to imagine this situation arising.
I am also alarmed that one of the OP's concerns seems to be that family members are finding the prolonged lives of their relatives difficult and possibly inconvenient, only one of the people she mentions seems to have actually expressed a wish to die. I thought the assisted dying bill was supposed to be entirely for the well-being of the terminally ill, not for the comfort or convenience of family members who are fed up of going to visit grandma in a nursing home and who wish she would hurry up and snuff it. This is a clear illustration of the concerns many of us had about undue family or medical pressure being put on people to accept assisted dying, which we were told would would never happen.

I blame the litigation threats. Doctors backs are against the wall in many cases. Families will often sue if they see a glimmer of money in the wings.
We had this discussion at our last bible study, and although for reasons not needed here, we did not support assisted dying, we all agreed that interventions have gone too far. Keeping someone out of pain is kind, keeping them alive against natural odds is not.
I just want to add that from a Christian point of view, it is absolutely acceptable to pray for a fair and kindly death for someone suffering.
Its modern life...its not easy.

We are going to do the same too.

I do think not having a breast screening is taking an unnecessary risk but it's your decision!

I've had the opposite in my family - people going to the doctor with symptoms they were told were minor, nothing to worry about, which later transpired to be cancer.

It is a tricky one. I don't think I can support assisted dying because of the fear of it being abused. But the flipside is the situation described on here - people living half-lives for years and years because they're old but thanks to modern medicine and the fact there's nothing technically wrong apart from old age, not dying. I have this in my own family and it's miserable for everyone. I'd like to remember my centenarian relative as the person she was, the dynamic woman I adored as a kid, instead of a living ghost. But now she's been the latter almost as long as I remember her being the former.

Your post disgusts me more than anything else I've read here. You should be ashamed of writing something so utterly stupid. People have shared deeply personal stories of elderly relatives praying for death and that's your only response? Are you in the USA by any chance? People there are kept alive forever - if they can pay for it. Everyone who can't is told to fuck off and die already.

Agree

I wonder how many people would rather die with dignity rather than riddled with dementia. I also think if care wasn’t provided free by the tax payer, then lots of people would think very differently.
Would you keep a beloved pet alive for years, in pain just prolonging the inevitable? Or would you put them to sleep?
Yet humans are kept artificially alive and for what? So they can live an extra number of years not knowing where they are, believing they are still young, crying for their dead spouse or parents who they truly believe have left them in the care home they live in. Shitting themselves, having to be washed and dressed by some randomer. At rocking in a chair. Even when they have moments of knowing who thy are, they are surrounded by others who are losing their minds, how awful. Frightened and in pain.

No thanks.
I’d rather die a couple of years earlier and not put my children and husband through that, or myself.

You've misunderstood. I want it for myself.
Any vet who recommended withdrawing food and water from an immobilised, dementia suffering cat or dog would be in trouble. It took 7 weeks for someone I know to starve to ďeath on the Liverpool pathway. I saw her every day of it.

You are totally right. The Hypocratic Oath has a lot to answer for.
My granny got to within a few weeks of her 90th birthday, born in 1888.
Was compos mentis until she fell over and broke her hip. She was looked after very well, but the doctor told my mother that they would keep her comfortable until the inevitable senior pneumonia took its course, which it did.
Whilst I understand that relatives, etc. want to keep people alive, I find this incredibly selfish.

I think you missed the point - it's not a risk if you have decided not to take the treatment for cancer, if you don't want to live to 100 and be utterly incapable of taking care of their normal bodily functions. Everyone has to die of something.

I recognise this - and assume that big change between 1995 and now is Shipman. He was an evil man who ended a huge amount of lives deliberately and maliciously but it seems one of the knock on impacts is less fudging about what good geriatric, end of life medicine might look like - instead it’s intervention after intervention unless there are some quite forceful conversations. (I’m not a doctor or a lawyer, just guessing…)

And who wants to be accused of wanting to kill their loved ones? “Mum would have hated living like this, does she need to take those statins every day whilst you spoon feed her” is a tricky one to have.

I do.

I want it for me too! I have plenty of money and I don't mind spending it on my care - but I don't want to be kept alive if I can't control my bodily functions and I have no quality of life - that's a personal choice that I will be denied.
And it seems that even when you make a request for no medical intervention, except pain relief doctors can override this - it's totally unacceptable.

It's the unintended consequences of amazing, modern medicine. Keeps many people going into their 80s/90s/100s but with no quality of life whatsoever, unfortunately.

What would you do?