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?

Life is much stronger than people think.

My mother lived to 104 and her last couple of years were like this. She was lost in a fog of timelessness. No illness carried her off. Eventually her whole biological system had simply had enough, and gradually shut down. It was very peaceful, and we were happy for her.

Profoundly disabled children with incurable medical conditions can also become a significant burden on their families.

This is why I’m all for assisted dying. Mil has dementia and has done for at least 8 years. She’s in a home and unable to do anything herself and doesn’t recognise anyone. What kind of life is that? DH and I have both said we would hate to be like that. We should be able to choose to live when we reach that that point.
As a relative you’re stuck in a grief limbo. They’re still there but in body but that’s literally it.

And this hits the nail on the head. Their bodies aren't able to go on existing. The only reason they're still here is because of medical intervention.

My dad died in 1995. He was admitted to a nursing home at the beginning of the January and passed away at the end of the February. When he was admitted our family doctor asked what form of medical intervention. We agreed for comfort. This meant he didn't get any antibiotics for a chest infection. This infection developed into something more serious, he slipped into unconsciousness, basically died in his sleep with family beside him. Excellent care at the nursing home, not skin and bones, not deaf, not blind, still able to eat. But he was ready. He said he was ready.

By 2015 the whole approach to nursing care had changed. One of my team at work, mother late 80s, went to hell and back. Constant medical intervention. Multiple hospital admissions from the home. Mum begging to die. Eventually, she did, deaf, blind, totally immobile, and what actually killed her was starvation. Despite the feeding tubes and drips and god knows what else, her body had shut down and she couldn't process anything being pumped into her. Watching her mum, in constant distress, slowly starve to death nearly destroyed my colleague.

I do not understand how the principle of 'do no harm' changed so drastically 20 years.

Yes In my admittedly limited experience, unable to do anything herself and doesn’t recognise anyone doesn't automatically mean 'no life'. Each of my parents, in their different ways, entered a kind of dream world made up of memories, fantasy and snippets of present perception. It was rather lovely once you let go of expectations.

So can disabled or ill people of any age - should they do us all a favour and die too?

Yes, where would it end, these burdens we should just dispose of?

Homeless people, asylum seekers, disabled people, stupid people and under class people are all quite the burden on society and the state aren't they?

Goodness me. Your compassion is astounding. The work shy are also ‘bankrupting’ the country.

Families need to have the conversation with medical staff about the Treatment Escalation Plan. Late DH and I discussed it and he decided he didn’t want anything done. No CPR, no artificial feeding, no treatment of chest infections. He did allow them to give him antibiotics for a UTI but that was six weeks before he died. I kept our copy of the TEP, all in red. I appreciate it's not possible where someone doesn't have capacity.

My grandfather very sensibly started to refuse things like flu vaccines that care homes will give automatically. He wanted to go.

Care homes perpetuate this problem. They are kept very sterile which reduces infections, hover over patients ensuring medication is taken regularly, provide pureed food etc to keep getting calories in etc. Better to stay at home and allow the decline - outside a care home lots of older people will quit eating, avoid taking meds, avoid vaccines & quickly get lots of utis, chest infections etc.

My mil (90) passed away two weeks ago - her last two years were a complete misery - we did what we could but what a way to go. She wanted to die didn't tell family though. Everytime I have visited my mother in a care home or hospital or rehab unit I have left in despair - they have no life, waiting to die - it's terrifying and I certainly don't want to be in the same position. There is no dignity in being doubly incontinent, not being able to speak, having no control over your body, no appetite, no interest in the world around you. We don't talk about it and only those who have cared for the elderly are aware and even then look what happens when you do you get people like @FashionPassion rocking up shaming you into silence.

Can you not accuse me of something I didn't do and still make your point?

At no point did I "shame" anyone. I asked questions for clarification in order to assist with my understanding and responses.

You should be shamed for your conduct towards me. Do better.

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

My priorities will always be putting my children first, keeping a roof over our heads and providing for them. My elderly parents don’t come before them.

I believe people should have the choice to end their lives when they want to, though assisted dying and euthanasia remain illegal in the UK.

It’s possible when sorting power of attorney for health and welfare to specify that you only want medical treatment or interventions that prevent you being in pain. I’m not sure it is the answer though as it seems to effectively be signing up for dying by slow starvation for some people. Ironically for my father the visiting GP over-rode that instruction to give him the Covid jab even after he successfully fought the virus itself a couple of weeks before. He had a quick death a week later.

Yes had two relatives like that
I think we underestimate how little food the body actually needs to do basic functions

My dad is worried about this eventuality, having seen this happen to his mother. He said he’d rather kill himself so that no money is wasted looking after him. It truly is him that is saying this. In no way have me and my siblings given the impression he would ever be a burden. I think the look on my face when he said that shocked him

My DM has advanced vascular dementia, bedbound, doubly incontinent, kidney failure, diabetes. She doesnt know who she is let alone anyone else. Yet somehow she is still here.

The one blessing of her dementia is that she doesnt know her situation. On the thankfully rare occasions she is lucid she is distressed and miserable.

So many times she has got to the brink then somehow pulled back. But each time a bit less has come back.

I sometimes worry that she is going to live on forever.

Define living ?

Vaccinating against flu and covid is a tricky ethical dilemma. I agreed to DM being vaccinated not to protect her but to protect the carers who look after her.

I think at that stage they have to make a choice. My grandad had said to my dad I don’t want to be alive anymore and in the least callous way my dad said well stop taking the medicines that are keeping you. You don’t have to take them that’s your choice and we understand your tired and ready. He continued to take them he wasn’t in a nursing home and wasn’t bed bound but a bit fed up with life I think by 96

How dare you.

the many moving stories on here by people who deeply love their parents and have been forced to watch their suffering and distress and you accuse us of caring about inheritance? How dare you.

I don't follow what's happening with that bill about end of life care ,but church had some leaflets telling us to email to say we are against it ,
Personally I'm absolutely terrified of dying ..I think Ive lost my faith ,no longer really deep down believe in god , and slightly worried by the time I'm at the stage the op is discussing here ,my DC will just pull the plug , because by law they will be able to make that decision

You need to be more self aware - do better!

Saved me from writing this Sparkle.

The whole thing suggests to me severe disability has no right to exist. In effect people are suggesting we should live in a utopian society where life is only determined by youth & productivity,minus tolerance or regard for the individual end of life process whether short or long.