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?

Agree 100%!

What this poster said! 👏Fings ain't wot they used to be! Generations of family no longer live within a stone's throw of each other, and there's no longer a dozen or more people within a mile to look after the elderly family members. Also, as you say, it's not a matter of looking after them for 1-3 years after they first start needing help - like it used to be - they can linger on and on for many years.

I know a few people (women obviously) who are run ragged looking after an elderly parent, and when they have a fall or some kind of 'turn' or setback, and have to be blue-lighted to hospital, they always come back, again and again and again. They keep 'fixing' them like putting a band aid on them, but they're still vulnerable and need constant care and they cannot be left alone, so need someone helping them/caring for them every day. As you say, this can go on for many years, 10 at the very least...

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Would you want to lie in bed in a nappy unable to do anything for years knowing it is only going to get worse?

Yes the burden absolutely falls to females to do all the caring.
Think about it though.
Women working full time until they are 67.
How on earth can they care for sick relatives?
Maybe some can have them live with them but it really depends on several factors.
I’ve yet to meet anyone whose male relatives do the majority of the caring.
Lots of other countries don’t provide free care for the elderly, that’s another reason people (women) do the caring.
There is a growing backlash against it though.

Sometimes going on for 10, 12, 14 years or more. (The medical profession do everything in their power to keep them alive for some bizarre reason..)

Well what else can they do, legally?

This is the reason ADRT forms are so important. It's unlikely that many of the people in this predicament now (aged 85+ say) will have considered making one of these, perhaps because their own parents lived in an era (pre the Shipman reforms) when doctors weren't so hellbent on keeping frail, failing old people alive. If you have stated your wishes clearly while still capable, doctors and relatives are on firmer ground, legally.

Doctors used to view old age as an inevitable decline rather than a treatable condition. Elderly people wouldn’t have received a formal diagnosis, surgery, or rehabilitation.

The problem is, in my 40s, my view was that if I was diagnosed with cancer in my early 70s, I'd take palliative care rather than suffer the awfulness of chemo and a reduced quality of life.

I am in my early 70s, I have cancer and am on oral chemo. My quality of life is fine apart from OA of the hip, and I can expect a normal life span, according to my consultant (unless bikes whizzing down pavements and through red lights take me out first).

It's so interesting to read your comment as my dad died from oesophageal cancer, they initially told him it was operable which was stupid because he hadn't had his pet scan at that point! When they did the scan it had metastasized to his liver and wasn't operable. He had two rounds of chemo to prolong his life but he ended up with sepsis from it wiping his immune system and it killed him. My family look upon in it as negligence which it kind of us but I think it was the better thing to happen to him! His tumours had actually shrunk but I always thought about the nasty death sentence he had ahead of his if he'd had to go through it all!

Even if it had been operable, the suffering afterwards for patients that had it sounded awful! When they cut part of your oesophagus out and pull your stomsch up to stitch it back together it's pretty horrific and the gastric issues long term sounded so grim.

Errr, allow them to die peacefully of natural causes, and not keep pumping them with antibioltics and shit, keeping them artificially alive with ZERO quality of life.

@HappyViewer I agree that you couldn't make decisions about your care once dementia had really set in, but perhaps you could when you were first diagnosed? As I said upthread, it wouldn't surprise me if my Dad (88) stops taking his medication when he's had enough of living. If he starts showing signs of dementia/is diagnosed, that might be the time that he does it. Due to his current medical conditions, he'd likely have a massive heart attack or stroke, and he has a DNR in place.

I'm pretty sure that I would take matters into my own hands if I'm diagnosed with Alzheimer's or dementia, because I really don't want my family dealing with it.

Exactly!

If you can keep someone alive and you don't, surely that's the same as euthanasia?

A friend of mine who was now 70 was planning to use his private pension to pay for his care when he got older. However he lives in a social housing flat and now hes retired hes expected to pay his rent and council tax with it until its down to £16,000 or below. You get help with social care at £23,000 He had £29.000 in his pension. The pension co charged him £6.000 to transfer his pension to his current account so he can use it to pay his rent. So its now down to 23.000 which is the lowest amount you can have before getting help with social care anyway. But as its going to be spent on the luxuries that are rent and council tax then its moot anyway. Saving does no good in this situation.

Why 'try and keep them alive' when they are very elderly and very ill with no quality of life? Just allowing them to die of natural causes is hardly killing them!

I'm so sorry to hear that - it's so hard to deal with it when you think medical negligence was involved. My family were very concerned about the palliative approach - but it turned out to be a kinder approach than all that brutal cancer treatment - I felt very sorry for my uncle - his cancer preoccupied the last few years of his life - my Dad rarely thought about it - to the extent that we often forgot about it too - I know that must seem mad but it was a non event to my dad.

The day my dad was told that he had the cancer and that without chemo he'd have about 3 months and with he might get a year and a half, he went home shrugged his shoulders and had a Chinese takeaway! He wasn't phased either!
My mum has the book that the nurse wrote his white cell counts in before chemo and apparently his white cell count was through the floor for his second chemo so probably he shouldn't have had it but his suffering was minimal and short so I find that hard to argue with.

Funny thing is I'd never heard of oesophageal cancer until he was diagnosed with it and strangely heard so much more about it after he was diagnosed.

But who makes that decision?

I'm not saying I disagree with you in principle, quite the opposite. But is it up to the elderly person themselves? The relatives? The doctor? What if the elderly person wants to die but the relatives want them to stay alive? What should the doctor do?

The doctor should do what the patient wants. And if they don't have capacity, then they should do what is in the best interests of the patient. The wants of their family should not trump the patient's needs and desires.

This. A patient’s wishes should be paramount.

No of course it’s not! Stop the bloody intervention of elderly people, who have no quality of life!

Do you really not get this? They are effectively vegetables and suffering. Do you have some sort of religious views on this. Have you EVER supported an elderly person screaming to die, suffering, not recognising you, wetting themselves, having fall after fall, UTI after UTI?

Sitting listening to some Doctor doing yet another memory test and smugly patting themselves on the back.

No, I didn’t think so..

These sorts of views make me boiling mad. They clearly have no idea.

I saw that video the other day and was meaning to post it on this forum as I’ve been thinking for some time about creating an advance directive for myself and she’s given me some good starting points. Have been having problems with the MN website so am now on the app - will see if I can start another thread on that subject.

All of this. ^