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?

How would you implement this if you had dementia?

When some people with dementia want to die they refuse to eat and drink.

I suppose an older and frailer person might pass quicker using that method than those people that do hunger strikes for political reasons and seem to go on for a good while - for me it's the thirst i'd dread, being really thirsty drives me mad!

How many elderly people do take their own lives? I don't think I've ever heard of a single case. We need to bear in mind that many of the very oldest generation will have had a religious upbringing, and regarded suicide as a sin. The ludicrousness of my mother, a churchgoer, saying to me when she was in her sixties that she wanted to be 'shot' or 'suffocated' (by me) if she suffered the same fate as my grandmother who had vascular dementia. And it's highly unlikely that she would ever have taken her own life, even in the early stages. So to me, the only approach that makes sense is an ADRT requesting no active treatment for infections, no vaccs etc. And for it to be strictly adhered to, not overridden. It should be as much part of life as a will, or POA.

I worked in a care home and a resident stopped drinking for three days, he was taken to hospital, he came home and then did it again and died. He was very vocal about wanting f to die and he had capacity. He was aged 57.

You make your wishes known in advance fill out an advanced care directive. Ensure the person you give your health power of attorney to has a spine and is willing to decline interventions on your behalf.

Sometimes this will generate a best interests meeting with social services so it’s important things are properly documented.

As the body naturally slows down and shuts down, the brain stops sending signals for hunger and thirst. Most very elderly or dying people do not feel the sharp pangs of hunger or intense, agonising thirst that a healthy person would feel if they stopped eating and drinking.

I think we need to have a proper conversation about quantity v quality of life. We could start by recognising that it's not a case of keeping people alive at all costs v bumping them off at the first whiff of dependence.

For reasons I don't understand, we don't seem to have a mechanism for people, i.e. the frail person themselves, to have a voice. There's a big gap between DNR and don't medicate to needlessly extend. The person themselves, providing they have capacity, should be allowed to say what they want and for that to stand. If they don't have capacity, then we'd hope for a living will. If they don't have a living will, then I think we'd have to proceed on the basis of best possible treatment.

None of this has got anything to do with assisted dying and we definitely seem to have a problem separating these to concepts, i.e. the difference between assisted living and assisted dying.

I do feel desperately sorry for those having to navigate this trauma at the moment. My husband wasn't so lucky with his own father, who was forced to linger, very much against his wishes (that is the father wanted to die) for a number of years. It was like watching someone be tortured. So painful for all. Nothing to do with burdens. Everything to do with being harmed by unnecessary medical interventions.

Dr Ezekiel Emanuel has written some interesting stuff on this. He’s an oncologist and medical ethicist and he’s said openly that past 75 he will refuse a bunch of stuff that could prolong his life, including cancer screening, antibiotics etc.

https://www.bbc.com/future/article/20141021-why-i-want-to-die-at-7

I do find it interesting his personal views are so stark one way yet he’s opposed to assisted dying etc.

Ah of course, that's why the become so prone to dehydration and UTIs!

Doctors used to withheld or stop treatments for dehydration and UTIs in very elderly patients who wished to die.

My gran lingered to 100 but there was nothing to celebrate. She lived in her own home with a carer and was just a body being taken care of for around 10 years after she forgot us all and herself. I smoke a lot in the hope it’ll get me before that.

I agree. My FIL has said to my 16 year old niece that he needs to be shot rather than go into care home.

But not everyone's life ends that way if they reach old age, not by a long chalk.

And if I've understood you correctly, you're saying you'd refuse treatment if you were diagnosed with something now. While you still presumably aren't elderly (though correct me if I'm wrong), have all your marbles and have some quality of life. That's incomprehensible to me.

I doubt any women caring for an elderly parent would regard the gendered expectations around this 'irrelevant'. I'm currently in this position and I certainly don't.

[Edit, forgot to add] And, out of interest, have you ever cared for an elderly relative yourself i.e. do you know the reality of it?

I’m not elderly and yes, I would refuse treatment. I don’t have a desire to live to a very old age.

It’s bloody hard work and takes its toll on you physically and mentally.

Actually it is easy and you can. But - and a big but you do need the relevant legal paperwork in place and someone willing to be an immovable wall on your behalf.
I did this with my husband two years ago and stood my ground despite being accused of “murdering Steve by not allowing the paramedics to take him into hospital”. He had terminal cancer and at that point hours to days to live - he survived four days at home instead of a hospital corridor. No treatment would have made any difference bar making him die in a frankly shitty hospital with shitty care.
Thankfully I have an equally courageous poa and a solicitor who’s made sure I have the same protections whether I have capacity or not.
dying is not the worst thing to happen to a person imo.

“You would moan if you had to pay for it but won’t do it yourself.”

I want them to pay for care!

“You would also probably have expected them to babysit your children for you when they were younger and able.”

They have never babysat my children. I don’t live nearby.

I have to admit, I don't know any retired people who regularly look after their grandchildren. Many people live some miles from parents, and they visit each other every few weeks, and have the grandkids on the odd weekend (maybe 4 or 5 weekends a year,) but that is often because the grandparents want the grandkids there.

Very few retired people are looking after their adult childrens children. As I say, the distance people live from one another would make this impossible.

My dad and his younger brother both had cancer of the oesophagus at the same time.
My Dad's brother was (78) and healthy - he was offered surgery, chemo and radio. He had it all - he went into remission for a year and then it came back - he had an awful time, felt rotten - had a miserable last few years and he regretted having the surgery and the medication, but he didn't feel able or strong enough to refuse. He died in hospital.

Dad (86) was offered palliative care as he was too unhealthy to operate on, to have chemo and/or radio. To my Dad his cancer was a minor irritation, you'd ask him and he'd say he was fine, it didn't bother him, he lived longer that his brother, and had a better quality of life away from hospitals and medication, it wasn't cancer that killed him. And he did just fall asleep like in the movies, in his own bed in his own house just like he had wished for!

We're all different - there's no guarantees.

But eastern countries are like it was here a few generations back - big families, lots of daughters and daughters in law hanging about to share the burden living close together, and admittedly I’m not certain, but I’d guess health care is not freely available, so they might be “looking after Granny” but I’d bet granny doesn’t live long once an infection/broken hip/pneumonia sets in.
That’s the big difference - its one thing looking after someone for a year or so, but western carers could well be doing it for decades with the patient deteriorating with every episode of illness but not dying.
Give it 50yrs when their standard of living rises, smaller families, women working outside the home, it’ll be just the same problems there.

Same here. I have seen it happen to too many people. Just existing, with ZERO quality of life, doubly incontinent, advanced dementia, can barely see or hear, have to have their nappies changed by carers, and be bathed by carers... 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..)

Nope. Ain't happening to me.

As has been said (a few times,) there s far too much money to be made in care homes to let these people die.

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 chemp and a reduced quality of life. As I approach 70, I think I'd like to see my grandchildren grow a litter bigger and older and share more family joy. One's existence becomes more precious as mortality approaches.

Why the fuss about about making assisted dying legal. Ultimately when strong pain medication & drips etc are prescribed to the seriously ill during palliative care in the final phase of life this in reality already happens & always has done.