So bloody exhausted waiting for someone to die 2

[StiffyByngsDogBartholomew]

https://www.mumsnet.com/talk/elderly_parents/4866628-so-bloody-exhausted-waiting-for-someone-to-die?page=1
Carrying on from our original discussion

Sorry @StiffyByngsDogBartholomew but I actually don’t have much desire to continue my life as it is now and yes I would refuse treatment cancer because I know how horrific some of the treatments are and in some cases they don’t they simply extend your quantity of life. I never see my GP anymore and have absolutely zero faith the NHS.

@StiffyByngsDogBartholomew I remember the full family meeting when mother said, no resuscitation, no intervention, no drugs except pain relief and end of life stuff because I don't want to be a burden darling. Only to find out she reversed it few months later, it was for attention. She would often say she was tired, bored, unhappy, hated us all and ready to go, she had 10 bottles of oramorph/liquid morphine in the bedside table 5x the amount needed to go peacefully to sleep but she hung on to the bitter end.
Me....I would drink the morphine.

@binkie163 my point was not what we think we would do now. My mum thought she'd rather be dead than end up like she has.
until you are in that position you cannot possibly predict how you will feel. We can think from the position of being healthy and relatively young that being incapacitated would be terrible and we'd better off dead.
however for most people it doesn't happen overnight so they become used to being increasingly frail. But it's like a boiled frog.

A couple of years ago DM said exactly what we’re saying about quality of life, unnecessarily prolonging etc. She was in the same position that I am now when she was caring for my grandmother 25 years ago. Now she’s scared of dying even though she’s much frailer and her quality of life is low. As previous posters have said, don’t underestimate the basic survival instinct. We’re hard wired to cling to life.

Well ,MIL has completely had enough, but for religious reasons wouldn’t consider assisted suicide even if it were available. She has an advance directive and DNR and is really clear she doesn’t want any treatment beyond hydration and pain relief if she gets an infection or other health problem. But she’s from a long-lived family and has had a very healthy lifestyle, so unless she catches an infectious disease I don’t see what’s to stop her carrying on until she’s 120. I am beginning to make my own plans for suicide as soon as DD is properly launched into the world: I only feel my life has marginal value as things are and I would rather lose 10 good years than end like MIL.

What we see as unbearable while still fit is probably the norm once elderly and frail. I just hope if all quality of life has gone I will still be able to drink the cool aid. I don't want to spend my last years in misery, pain, confusion, in nappies not knowing who my husband is.
I wouldn't do that to my dogs.
Some of the posts I read are just so sad. I am glad I don't have children to burden if I become that person clinging to every breath in a pain riddled husk.

I know in Ireland the govt are justifying the extraordinary level of inward migration by pointing to the elderly population and insisting that it's necessary in order to pay for pensions and elderly care. And yet the younger people can't afford to live, have families of their own to become tomorrow's taxpayers, afford housing. It's all such a mess really.

Well the overwhelming narrative is that the ONLY person that matters is the elderly person needing care. If anyone tries to make space for their needs as well, they're just derided as selfish.

I remember during covid somebody on here saying that brown children die in their thousands around the world and nobody gives a shit, but old white people dying, stop the world! She had a point.

The whole situation is such a mess - but you are right @StiffyByngsDogBartholomew, when people get to that frail stage, with apparently no quality of life, they cling on even more.

My DM was moaning over Xmas about being “kept alive” and yet she unfailingly gobbles down her 20 or 30 meds every day, pesters the doctor for appointments if they don’t arrive quickly enough and is now getting an incredibly expensive procedure courtesy of the NHS which will have a doubtful effect on her QOL but which will cost a lot.

She is overtly religious, as well, and was overtly devoted to my father, and yet is so terrified of her eventual demise, despite all this and being in her late 80s, that she is also on anti-anxiety meds and ADs…

I don't know what happens if, let's say one has made an advanced directive etc, if when push comes to shove the person says actually I want to be treated, I don't want to die. Can anyone say what would happen on that scenario ? I would have thought that the person would be treated regardless what they previously said

I feel like I have found my tribe.

My mum is 96, immobile, doubly incontinent, has vascular dementia and is at present being treated for pneumonia.

I had a 37 hour wait in a and e, and earlier this week was called at 2am to sit with her and keep reinserting her oxygen tube as she was anxious and kept pulling it out. The locum refused to sedate her.

They are now sedating her and I've got a bloody chest infection.

That's outrageous @Kayemm
im sure they would have sedated if you hadn't conveniently been available .

I think THE worst part for me at the moment is the mess and smell. The dog makes the house smell really bad, & so does my DF. It actually makes me feel uncomfortable in my own home. I have asked so many times for him to clean up after himself but it doesn't matter because he doesn't seem to listen.

I'm exhausting myself even more by trying to keep on top of the cleaning. Every time I walk Into a room there's something there that just sets me off because it's happening so often.

My aunt had vascular dementia. She had a DNAR in place but it only specified not attempting CPR if she arrested.

She was being cared for by various people and always reacted with extreme violence and paranoia. She was 92 and doubly incontinent - screamed loudly, calling for the police, and hit, kicked and spat at her carers every time she was washed and had her pads and her nightdress changed.

Despite this, in the last two years of her life, she was given antibiotics for several UTIs and chest infections.

I argued that the DNAR (in my mind) meant that measures to treat infections should not be used - but the GP and carers did not agree. I recall one of them (a nun) telling me that because antibiotics were available, it was a dereliction of duty not to administer them.

I am sure that aunt would have died a long time before she actually did if she hadn't had so many courses of antibiotics given.

Have you decided how you're going to tackle him assuming he's coming back after the respite?

TheShellBeach I’m here! Think I’ve posted before but my weary brain can’t remember. Thanks for the introduction. So many poor folk like me trying to make sense of everything it’s just too much.
I’ve learned so much since yesterday it’s incredible. I’m here from my thread,” mum in a care home temporarily “sorry can’t link it. I’ve got lots of reading to do.

Welcome. I hope you get some support here.

As your mum appears to have a low quality of life and possibly limited capacity are you not able to ask doctors not to treat her pneumonia? Are they really saying it's in her best interests to be cured of the pneumonia so she can soldier on declining further until.... she has a stroke or heart attack?

Sorry to be blunt about that but my mum is 91 with dementia so just a little way behind your mum. Mine still seems to have some quality of life but I want pneumonia or something else to take her before the dementia takes away all her faculties and makes her a baby. She has a DNR now and an agreement with her care home and GP and me that she would not go to hospital unless something like a broken leg which could be fixed. Otherwise she will stay at the care home and 'be kept comfortable'.

It's easier to have the conversations when she is not ill but I would certainly ask her GP what input you can have into treatment decisions and if trying to fix every issue is really what is best for her given her current health. I think sometimes drs continue because these conversations haven't been had and they need to next of kin to say it's ok to let someone go.

I tried posting another thread but people apparently couldn't clock on to what I was talking about. I got bored of trying to explain myself. Despite posting in elderly parents not AIBU or chat (which I never go on)

so.. what will you do in your fantasises (or hopefully reality) when your caring responsibilities finally end ?

im going to pack Dd and Dh off on holiday for 2 weeks if she is still living at home so I can enjoy the luxury of 2 weeks in my home on my own with nobody wanting my attention/dinner/lifts/deal with medical dramas etc etc. I'm going to eat sandwiches and cheese & biscuits and not cook a single thing.
im going to buy a harp and learn to play it

Are there any, in real life, groups where these sort of conversations can be had? I get the impression that if anyone dared express these thoughts out loud they'd be completely vilified. The bottom line is that we are wishing people dead. But dead for everybody's benefit (well, I suppose with the exception of share holders/executives in drug companies).

Kayemm. So sorry to hear what your mum and you are going through. It makes you wonder what would have happened if you hadn’t been available. I think it’s totally unacceptable to ask you, but nothing surprises me these days.
I think Choux has a good point. Have a talk with whoever is looking after her. It’s cruel in my opinion. What would your mum want ? I hope you feel better soon too.

I argued that the DNAR (in my mind) meant that measures to treat infections should not be used - but the GP and carers did not agree. I recall one of them (a nun) telling me that because antibiotics were available, it was a dereliction of duty not to administer them.

And after my last post I read this. I imagine a nun is a fervent believer in the sanctity of life and trying to preserve it no matter how poor the QOL. I am now very thankful my mum is not in a religious care home.

I think DNAR is purely about what happens after cardiac arrest.

I am gearing up that I may have a future battle trying to have my mum NOT treated for something. This currently involves building up a good relationship with the care home manager so she knows I AM a caring daughter and that I have mum's interests at heart. Fear of being judged when I say 'don't treat her pneumonia'.

Both my parents got / are getting great treatment when they needed it. But taking them to appointments and sorting out home GP nurse visits, District Nurses and Intensive Home Support Services was a revelation as to the proportion of NHS funding which must go on the over 70s. It can't go on indefinitely - in my opinion there needs to be some kind of link between a measurable QOL and what is still appropriate treatment. A bit like how they were going to decide who would get a ventilator in wave 1 of Covid.

Hi @Metoo15 and welcome!

Here's a link to your thread:
https://www.mumsnet.com/talk/elderly_parents/4978546-mum-in-care-home-temporarily

And here's the beginning of it

https://www.mumsnet.com/talk/elderlyparents/4978546-mum-in-care-home-temporarily

@Choux absolutely the conversation around medical intervention needs to move away from "can we" with the inevitable answer being "yes" to "should we"

The issue is how do you quantify it and how do you deal with relations that aren't happy with the clinical decision. "Playing God" is often touted although that is a straw man argument imo. You start playing god the minute you intervene in the natural course of things by prescribing ABs or giving intrusive medical treatments. So if god had had their way that person would have been dead already.

This is what I was referring to - it was a scoring system taking into account age, frailty and co-morbidities to determine how to allocate ventilators when they were scarce.

Antibiotics of course are not scarce but I don't see why something similar couldn't be in place to determine a point at which it's medically and morally acceptable to withdraw prescription of antibiotics or at least force doctors to discuss with family if they want the antibiotics prescribed.

www.google.com/amp/s/metro.co.uk/2020/04/14/chart-shows-likely-moved-intensive-care-nhs-treatment-12553121/amp/