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?

Euthanasia would be deliberately injecting someone with a double dose of morphine or barbiturates (which many doctors used to do, quietly, when confronted with a hopelessly sick patient). Letting a simple infection take its course so it turns to pneumonia, then treating the person with pain relief and sedatives while they pass is not euthanasia. But even euthanasia, even what the sick elderly cat gets (a double dose of anaesthesia, I believe), would be preferable to the cruelties meted out to our old people!

Good for her. That’s lovely. My DF’s Alzheimer’s became apparent 12 years ago, when he was 80. For the past 4 years he has been in a nursing home. When he went in he was totally immobile, extremely confused and needed to be dressed, washed, toileted and hoisted from bed to chair etc. Since then and for the past 2 years at least he has lost almost all control over his body apart being able to move his head slightly to the right and some movement in his right arm. He has no facial expressions other than when in distress when he groans and bites his one hand or the hand of anyone who tries to stop him. He is spoon fed mush and he hasn’t been able to speak at for over a year now. The loss of speech was something of a mercy for us as for the previous 3 years all he did say, repeatedly, was “Help me, please. Help me.”

This thread isn’t about elderly people with a reasonable or good quality of life, however frail they might be. It’s about people like my poor DF whose continuing existence is completely and utterly miserable. And yet he gets antibiotics for every infection and his flu and Covid jags! Great effort is made to ensure he gets calorie dense food and remains well hydrated.

I’m sorry that was a bit of a rant. To be fair to those who really don’t get it - they are almost certainly in the very fortunate position of not knowing just how horrific this extended end of life can be.

Someone is making a lot of money out of this and effectively bankrupting the country.

could not agree more.

nobody wants this.

The shareholders certainly want it. I know of one group of nursing homes (think 13 in total) in N Ireland where the pretax profit a couple of years ago was £20M.

I am so sorry about your father @Seeingadistance . 💐 I take it you've spoken to the staff about these treatments, what do they say about it? I don't think history will judge us very kindly for putting our old people through this mindless torment.

But its simply not natural to live that long or in those conditions. Its going completely against nature to prolong life to such am extent that we are actually causing more suffering. Being alive should never be a goal, being happy should be and I doubt anyone is happy living like that.

Seeing. That is awful for him.

Could you explore some sort of statement saying no more interventions. I guess he doesn’t have capacity which is a warning to us all to get our wishes in writing.

Will someone be giving him Covid and flu jabs shortly?

@Seeingadistancei hear you and your pain and have also had a relative like that. Until you’ve seen it you wouldn’t believe it and how long it can last.

right now I have a relative close to that state in their 70s. I also have a hail, hearty and very independent late nonagenarian relative. What appropriate medical treatment might like for both of those people should be different, imho.

I’m a Christian and every morning I pray for my father’s death - an end to this terrible suffering and distress.

She didn’t say that at all! She said that was what granny would have preferred but it obviously wasn’t an option!

It’s awful isn’t it. My neighbour had dementia for 20 years, a quarter of her life. She had ulcers that went to her bone, and ended up not just on a pressure mattress, but some special bed that rocked her to and fro. Every effort was made to keep her going, meanwhile, the house will have to be sold and the son who looked after her will be lucky to be able to afford a flat, even after leaving London, where he’s lived all his life.

Thank you.

My mother has POA and she insists on him getting all these “life” extending treatments. My DSis and I have had endless conversations about it with her but to no avail. Her life now revolves around the nursing home and there’s something quite troubling to me about the way she treats my father. But that’s a whole other issue.

There is a new depute manager at the nursing home and she is very keen on the concept of “a good death”. She has come up with a form addressing various aspects of care up to and beyond death. There was a very recent meeting when that form was completed and after some discussion my mother did agree that if other medication could make DF comfortable rather than antibiotics for an infection then that would be ok. However, when we do get to that point again I fully expect my mother again to insist on antibiotics. And on and on we go…

He hasn’t had capacity for a number of years now. My DM has POA and she agrees to all the vaccinations, antibiotics etc. He had his Covid and flu jags last month. I keep saying, “To what end?”

My DF’s own father lay in a hospital bed for 8 years (back when geriatric hospitals were still a thing) unable to move or speak after a massive stroke. At the time my father said that would be his worst nightmare and that it would have been better after all if his father had died from the stroke.

I have started putting together my own advance direction and my family are in no doubt at all that I would not wish to be kept alive as my father is. As I mention in previous post DM has reluctantly agreed to comfort meds rather than antibiotics for future infections but I expect her to change her mind on that.

A lifetime friend is 20 years into Parkinsons. He is completely coherent, but his body is awkward and jerky and unreliable. His responses are slower, but not stupider than they would have been 20 years ago. He holds the Queen's Gallantry Medal and several others for dangerous bomb disposals. I want him to continue to be regarded as a hero, rather than a liability.

I know someone who looked after their elderly mother in law in the family home. The mil had mental health problems and all the kitchen knives had to be licked away. They didn’t actually tell me whether they thought she’d use them on herself or on the rest of the family.

I don’t personally believe in assisted dying. However, my own elderly relative has frequent falls, and broken bones, and each time they visit A&E they’re given all sorts of scans and tests to check for all sorts of things. When you’re constantly having scans and blood tests, any little thing is caught early.
it’s a bit like British Gas telling you they can keep your Worcester Bosch boiler going forever. Yes they can, if you’re willing to service it regularly and spend whatever is necessary endlessly replacing parts, then yes, you can keep it going forever.

I would do an advanced directive.

There are two conversations on this thread that I think are getting mixed up. Extending life through the use of life-prolonging (and preventative) medications is one thing and contributory to the issues raised in the OP.

Assisted dying is not, and was never proposed, as the answer to this. AD was designed to be offered to patients with a clear terminal prognosis, which in effect means cancer, some progressive neurological diseases and maybe end stage organ failure (heart, lung or liver). It was designed to be very limited and any expansion to those with dementia, frailty or psychiatric illness would (quite rightly) have opened accusations of a slippery slope and been extremely concerning. I think the throwing out of the Bill was absolutely the right outcome and I don't think it is possible to design a good AD Bill.

But I completely agree about the mess that we have enabled with modern healthcare and completely unreasonable expectations of everything being fixable or living to 90 completely well. And these conversations (about the type of old age we want or are prepared to accept) need to happen early. Kathryn Mannix's book 'With the End in Mind' and Lucy Pollock's book "The Book about getting older" are both excellent starting points. Or Atul Gawande's book.

One of the main reason that doctors want to keep treating is concern about litigation and expectations of families. And often those expectations go unchallenged by the same doctors, through lack of time, or lack of confidence. Allowing a good, timely and comfortable death requires careful conversations and this takes time and relationships, sadly in short supply. There is also a huge societal conversation to have about what we can afford as society. There is an opportunity cost to prolonging or enabling extreme frail old age.

But ask any doctor about whether they want resuscitation, or extensive unending treatment, and the answer is almost invariably no. I know that I would very carefully weight up any cancer treatments (I am in my 50s) and have no plans to have screening (other than bowel, which it IS worth catching early) or take preventative medications like statins. But that is my choice for me only and I do not know who in power will ever have the guts to start a conversation at a societal level.

No, this didn’t happen. If you read the post you’re referring to, her granny asked the family to do this a few years before she actually died. The poster was using it to demonstrate her granny’s own approach to not wanting to die a long drawn out death with lots of medical intervention. Both granny and family were probably fully aware that her request was never going to happen.

When I was a teenager my mum chased me out of the house holding a knife, I found in recent years she once held a knife to my brother when he was younger. The problem is that I have found out in recent times that benzodiazapines can react badly with some mental illness and make them more violent!

We should be allowed to judge it for ourself at the very least.

Why aren't I legally allowed to say - help me to go now. It's barbaric to force people to go on living when they don't want to

I would quietly suggest that someone having fall after fall, UTI after UTI, is not being well cared for.

Like many people on the final stretch of life, my mum improved no end after admission to a nursing home. She got the correct meds at the right times every day; she ate and drank sufficiently well on a regular schedule; she was taken to the loo as soon as she needed it; she rested well, was perfectly clean and was lavished with kindness.

We agreed we should've done this six months earlier, so she would have had longer to enjoy the benefits instead of muddling miserably through at home. She had carers and visits from us, but the difference in quality was glaring once we saw how well the home worked.

I am working my way through my life admin.

Wills are in place. Currently changing the way that our home is owned so that DH and I will each have a pot of money to pay for care.

Next will be POAs.

Final piece will be Advanced Directives - these are legally binding if properly witnessed so need to get the wording right.

Same!
I have LPAs set up for my DC to administer, but didn’t know until today (thanks to this thread!) about Advanced Directives and the comfort meds instead of antibiotics.
Will definitely instruct not to have the vaccinations is that is possible.

I am doing the same - no heroics, I do not want to destroy my kid’s lives by hanging on for years and it’s not about the money. It’s about giving them the freedom to live their lives without me being a burden.

This is how I feel. Watching my DM's decline is awful. My DGM had dementia, my DM has it. So there is a good chance I will get it. I will do what I can to keep it short.