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?

Well if I was existing like that I'd want to die. I'd be happy to sign a statement that if I was bed bound and unable to communicate, I 'd like to be euthanised. Unfortunately there are many people who have fought very hard to prevent me from ending my life the way I'd like.

Not if we're in constant pain and unable to enjoy any aspect of life.
My kids wouldn't make me feel a burden but when I am no longer independent I don't want to exist. And I'm not (by a long way) the only person that feels that way.
Your way of 'being kind' makes us suffer

It's horrendous when a loved one gets to that stage. If you haven't witnessed it, you just cannot understand how awful it.

DH had to put up with his Mum begging him to shove a pillow over her face every time he seen her. She only stopped asking when dementia left her as nothing but an empty shell of a once intelligent and vibrant lady. All she had in the end was a heart that refused to stop beating for 4 torturous years.

Medical science helps us live longer, much longer than our Grandparents and Great-Grandparents but for those who aren't lucky enough to stay healthy of mind and body, it isn't a life being lived.

Who gets to be the judge of that?

When MiL was bed bound and suffering from dementia, she knew no one, and was afraid of everything. We had to get a bit assertive about not giving a constant stream of antibiotics, but to ensure she had enough painkillers.

Your last line was a massive blanket statement and unlikely in reality.

Her heart refused to stop beating 🤔 Your turn of phrase makes me wonder why and also (compassionately) what the right answer is.

My mum is 91 and lives in a care home. She’s mobile, eats a normal diet, reads voraciously and enjoys visits with her family. Her neighbour is 100 and still enjoying life. I know couples in their 90s still living independently, exercising and discussing world events.

I live in Australia and discussions on MN about ageing always leave me bewildered and often disturbed. Both by the sheer numbers of elderly people apparently living years of misery begging for death and how rapidly the conversation always veers to financial cost and assisted suicide.

I'm amazed that everyone in their 90s in Australia is hale and hearty. Must be something in the water

My grandma died at 105. She was miserable and I could hear her cry at 3-4 am asking god to end it. It was horrific. She lost most of her sight and then her hearing as well, it was like being imprisoned. I was glad she died peacefully and not in pain.

Well yes of course - if they want to. But lots of people in that situation don't.

Woukd you want to live your life in bed, for years on end, in pain or discomfort, incontinent, maybe unable to see or hear?

Voluntary Assisted Dying is legal throughout Australia
https://www.dignityindying.org.uk/assisted-dying/assisted-dying-around-the-world/australia/

At 91 my grandma was the same. At 96, she couldn't swallow normal food, lost her ability to see, move, and couldn't talk except for a whisper. Let's all pray that doesn't happen to our loved ones or us. It's not a question of if decline comes, it's when, and in my experience, it happens a lot to very fit old ladies who seem to have eaten good diets, done moderate exercise and there's nothing wrong with them as such, so the decline is very slow and can be extremely difficult for them and those watching them. My grandma loved life, but at 96 did say she'd had enough of living and refused to go to hospital for further treatment, which I think was right. Her heart was very strong and when she passed away she was 5 stone and completely shrunken, like half the person she had been, like a tiny frail bird. I don't want to be her and I don't want myself to go through that, if I'm honest though if it's my destiny, so be it.

We aren't talking about people who can eat what they like, see friends and go out and about. I'm not, anyway.

I dunno. I've been on the edge of death twice. Both times, I was astonished by the intense power of the will to live. It's atavistic; nothing at all to do with conscious thought, value appraisals or even wishes. It overwhelms everything.

I don't think people's expressed 'desire to die' is meaningful in the deepest sense. The fact that they're having these thoughts indicates, in itself, that they are not ready to go. The body's instincts haven't yet kicked in. When people are actually in the process of dying, the will to live goes quiet and, 99 times out of 100, is replaced by an equally deep and focused acceptance.

Both my parents were very much enjoying life in their 90s, despite rapidly increasing debilities and reasonable resentment of same. Stepdad died after a couple of weeks in hospital, genuinely peaceful throughout. Mum took a few months at a care home - she also conked out quietly, having been asleep for most of the preceding weeks.

I write this in the knowledge that I have a chronic disease which leads inexorably to strokes, heart attacks and many years on supportive equipment. Without children or money, I believe I will opt to see myself off before becoming fully dependent. I also know I will instinctively rebel against this decision, perhaps so strongly that I don't go through with it. If this happens, I'll understand and will continue to seek the good in life - however small - until it peters out.

This is not anybody else's decision to make on my behalf. Let them make peace with their own instincts, not presume mine. Wishing for another's death is not kind; justifications can't make it any prettier.

I understand the strains of being in a caring role for the weak, disabled and unhappy. This is, however a choice. If you can't stand it, delegate.

A friend of mine was caring for her elderly grandfather who was bed bound and needed antibiotics for recurring infections. The GP finally said "At this point you're prolonging his death rather than prolonging his life" - they agreed no more antibiotics and he slipped away peacefully a short time later.

A woman who lives nearby me is 104 years old. She is in her house bed bound, no quality of life. Carers go in, plate a sandwich for her (don't make sure she is able to reach it much less eat it) and that's that. She's on a hospital bed that is lowered to the floor mostly but raised to change her. She has four children who frankly don't bother with her and instead call her cleaner to assist her instead of making proper arrangements or helping her themselves. That's no shade to cleaner but it shouldn't be dumped on her (and it is). They won't put her in a care home though because it'll rinse the inheritance dry and can't be having that.

They won't put her in a care home though because it'll rinse the inheritance

That's the quiet part people won't say out loud.

Then we need to have a good hard look at our priorities.

Our elders aren't clutter at the edges of our lives and a person doesn't become less human because they lose physical or mental faculty.

We all benefit from advances in medicine that mean we don't die from things that would have killed us 50 years ago. The payoff for that is that we're all living longer. You can't have one without the other and I don't know what the answer is but I do know that some kind of Logan's Run scenario isn't it. Maybe if we get ourselves a proper health and social care system, then things would look a bit different.

My Father refused treatment for cancer in his eighties as he had in his words lived long enough. I found his strength and resilience amazing really. The hospice nurses were fantastic at keeping him comfortable.

There is no good solution. My dad is 89 now and for the past 3 years has had Parkinson's and lewy body dementia. I wouldn't wish it on my worst enemy. Till then he used to be so active and full of life. Now He can't walk independently (or do anything for himself), he is practically blind and now his hearing is going. He doesn't enjoy any of the things he used to love. He refuses to get out of bed till late at evening. He has constant body aches. He has got terrifying and terribly upsetting paranoid delusions and hallucinations. He is convinced my mum is having multiple affairs and that his nurses are trying to kill him. My mum lives in hell because he keeps calling her every minute and accusing her in very graphic details. Every day he cries that he just wants to die. He doesn't respond well to medication. It's no life, worse, he is trapped in a nightmare that he can't wake up from but what can you do? Nothing. His body is strong otherwise. He could keep going like this for years. The worst is there is no way out from this except for dying. What a scary thought that must be. It cannot get better. My heart breaks for my parents but there is no good solution. Maybe if he had a doctor that cared enough to find a sedative that would allow him to just sleep but that is the best you could hope for and even that is not a possibility. As I said there is no good solution but how on earth are you meant to accept this?

My thought exactly. I find these threads really disturbing. My parents (in Australia incidentally) are in their 70s and 80s and leading a very active life. I am in the U.K. but have quite a lot of elderly neighbours in their 80s and 90s who also live independently, going on holiday, etc.

what are we proposing - that as soon as they start declining, it’s a lethal injection? Shall we also do that for severally disabled younger adults and children who need round the clock care?

@LazyCrazyAndStupid - why is your father still at home, taking so much out of your mum?

Threads like this make me heave. We have looked after our foster son (severely disabled from birth) for over 20 years. He isn't a burden and he isn't sad. He just has a quieter life than most people. It's the thin end of the wedge when we normalise views about people being burdens.

FWIW, I believe the Assisted Dying Bill failed because open discussion about it was prohibited. When you tell people who feel uneasy or have questions that they are shameful, you're just shutting them up, in which case you don't deserve to get your bill through Parliament.

À friends mum-who was absuive to all her kids... Blew through over a million quid on care...

@CharSiu It wouldn't surprise me if my Dad (88) decides one day that he'll stop taking his medication, because he's ready to go. He's got various conditions and would likely have a heart attack or stroke without medication. He has a DNR so that would probably be the end.

I think it's perfectly reasonable to assert our agency as your Father did and if we don't want treatment, we should refuse it.

The thing is, the medical professional has to keep them alive. My FIL almost died earlier this year. He's been very unwell & can't even use his legs, toilet himself & can barely lift a spoon. They revived him & said right, off to age care. He can't do anything for himself & never leaves his room. It's admittly a huge drain on us & all his money has been eaten in care fees already. He will likely live for years like this if they keep reviving him. No quality of life, just endless medical intervention, drugs & begging for a carer to take him to the toilet. They've gotten sick of it so he's got a permanent catheter.

My GM, at 101, was begging to die and crying as they were saying another feeding tube down the throat for you..... as she could no longer eat & was literally vomiting feaces. Thankfully she passed before the last tube.

What's the point? Where's the dignity?