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?

When they want to, yes. That's the important part.

@Ved “If I was diagnosed with cancer now, (late 50s) I would not have any treatment/chemo/radiotherapy. It would probably do me more harm than the cancer!”

Same. I don’t have any screening tests and I won’t have the flu jab or any other jab once I’m eligible. I will refuse treatment.

Is it 'part of the younger generations lives' for both sexes?

Fine for you if that's what you want. Seems a very bleak way of looking at one's life, though.

@FashionPassion

I have to say Fashion I find your posts extremely insensitive and lacking in empathy.

You are fixated on theoretical ideals, "what is the solution?" etc when people are literally sharing their lived experiences about their own relatives - mothers, fathers etc

You seem to be so focused on ideals and theories and not the reality of actually witnessing someone you love dearly suffering - read that again - suffering - a life they would never have wished for and clearly hate.

Someone has posted about their RESPECT wishes being overridden by the ambulance crew - why don't you comment on that?

You are blindly suggesting that people who don't wish their family members to suffer unnecessarily are trying to avoid a burden - but why don't you advocate for people's wishes to be respected with the same enthusiasm?

Your posts are so awful. Totally lacking in empathy for the lived experiences and people's actual experiences. Just theory. And debate for the sake of it.

If someone is utterly miserable for years and years that is not a good outcome - for anyone. For the person, for their family - for anyone.

It's nothing to do with younger generations trying to avoid "burdens". It is about people not wishing to see someone they love dearly living a life that they know that person would have hated or that is causing them distress.

That's what I was wondering too. Caring for the elderly is full-on, it certainly doesn't allow for anyone to work, if the person is to be kept safe and supervised. So unless it's an enormous family working a rota, it means someone giving up their own home and life and earning capacity for 10+ years. And yes, that's probably a woman.

There is a thread on here atm where a family have a tricky scenario with a sibling who lived with and cared for the mother, who has now died, leaving her in the family home - she has no home of her own, yet the house has to be sold. Such airy waves of the hand - 'old people should be cared for at home by their children' take no account of all the difficulties of the practical consequences of this approach.

It is dependent on the individual my dad is in his eighties in great health but wants to die as he does not enjoy his life. My neighbour is 95 and still completely independent. She can’t walk long distances anymore but has a scooter if she needs it other than things like a hospital app where she would need a lift or taxi she requires no support and is content.
I think our laws around assisted dying are cruel and inhumane

I agree. I don't go for cervical or breast screenings. I'd refuse treatment anyway, so there's no point in going. I also think screenings carry potential harms like overdiagnosis and overtreatment.

Once I can no longer feed myself because of say dementia, I would not want to be spoon fed or given hydration. I would also refuse hospitalisation for infection as I would not want IV antibiotics only oral.

Seems very bleak to end your days with no quality of life, just lingering in a half state.

To those saying ‘I will refuse treatment’, have you actually been in that position yourself? Like your health has badly deteriorated, you can’t get out of bed, you need someone to take care of cooking, washing etc… you might not be able to wash that often.

Because I am/have, and life looks pretty NOT as clear cut as so many people make it.

By any means, have an advanced directive in place. One you’ll review regularly (because what you want at 55yo isn’t the same than 65, 75 or 85yo)

But I’d stay really well cleared of assuming you know how you’ll feel when confronted to the reality of ‘no treatment’.
And you might also learn that beimg housebond/bedbound doesn’t automatically mean you don’t have a life worth living either

You wouldn’t be able to refuse hospitalisation as it’s unlikely you’d have capacity.

I’m not sure tbh but would presume the woman take on the majority of the care. That’s irrelevant though, it’s still a very entitled point of view to say you don’t have time for ‘burdens’, it’s part of life and this is just what happens when relatives age.

People say this not realising what the reality of dying from either of those conditions would look like. The tumour would grow out of your breast and the skin around it would rot. Similar would happen with your cervix. It would be a horrific way to go and at some point, you’d have to take yourself to hospital where the poor doctors would have to try and make
you comfortable.

You don’t fall asleep and die like in the movies.

Well, we are western, and I personally as a woman would not want to adopt Thai or Indian cultural values in order to prolong my life. Also I don't believe Thai or Indian men are doing much elder care, or child raising for that matter.

Well that is if you could get proper palliative care in a hospital….

I agree people have no idea what it means to ‘just let the illness take its course’. Some times, it might be the kindest thing to do. Often it is not.

Like you have an infected wound. You don’t want AB. So you’re waiting with an infected wound, in pain, hoping it will become systemic quickly to take you away.
Not what’s I’d see as a peaceful and nice way to go.

How could a doctor euthanise someone when they’ve taken the Hippocratic oath? Even if it was legal, it’s harm.

“at some point, you’d have to take yourself to hospital where the poor doctors would have to try and make you comfortable.”

No, I wouldn’t take myself to hospital. I would kill myself instead, or if I couldn’t manage that, I would take to my bed and stop eating and drinking.

This is what people seem to either forget or just not understand.

All this “I will refuse x, y or z” is just not realistic. By the time you are at the stage you don’t want to be at, you won’t have the capacity to have an opinion.

The 'poor doctors' coped 50 years ago, and until Shipman I believe were quietly and efficiently still 'coping.'

Do you not think that these people don't let their families know that are miserable and don't want to be here? There's tons of posts here from people who are suffering because they've got a relative that's very vocal about not wanting to be here! You've no idea that toll takes on people and how energy sapping that is? Have you ever found it so hard to ring your own mother that it takes ages to psyche yourself up and a stiff drink to be able to do it? Trust me its not fun when they are suicidal and don't want to be here!

Easy to sit and say that! Just like my mum often talks about taking all her benzos and ending it but she never has the balls to do it.

Was taken away from my dad, lost some use of his hands so couldn’t open the bottles even if he wanted to.

No option to opt to die even for a person entirely paralysed and losing themself to dementia

Even these days they are allowed to give enough drugs to someone to kill them off provided that it is the pain relief that is the intention, death is a side effect.

Medics are very concerned about being sued / reported so often have a let’s start off low so we do no harm. If a person is effectively dying then is it still harm?

Not all medics tbf I read a sad story where palliative care was going toe to toe with oncology at a dying child’s bedside because she was still in pain despite all the drugs and one lot wanted her sedated. The idea being if you cant take pain from the patient you take the patient from the pain.

Obviously an awful story but I was glad to see some doctors are still willing to fight for their patients rather than the endless arse covering.

Obviously, I can’t be absolutely sure that this is what I would do, but I’ve thought about this for a long time. I looked into health screenings and made an informed decision not to have any screenings.

I used to work in residential and nursing homes when I was young. I often saw elderly people refuse to eat and drink when they wanted to die. They were allowed to die in those days without doctors trying to save them.