So bloody exhausted waiting for someone to die 4

[StiffyByngsDogBartholomew]

continuing from our last thread

www.mumsnet.com/talk/elderly_parents/5036546-so-bloody-exhausted-waiting-for-someone-to-die-3?page=40&reply=140073671

And I’m so sorry that you’ve lost your grandmother @PatchworkOwl, I remember very well those mixed feelings of being glad they’re no longer suffering but missing the person they were before when my grandmother died of dementia. Sending you the warmest of wishes.

I've been mostly reading posts rather than contributing to the board but coming on here to say that I have sadly "graduated" this morning after 5 very long years ever since my parents in law moved back to the UK after enjoying 16 years in the south of France. The board kept me sane as my MIL was going through cancer and died two years ago, my father in law followed this morning to be with her after 18 months in a care home with mixed dementia, with multiple hospital admissions and "prepare yourselves" conversations (sepsis, stroke, infection after infection, you name it). The virtual support from the board and the stories have been an amazing source of support and just wanted to send a massive collective thank you to everyone. Waiting for someone to die has been bloody exhausting and so tough but there is a profound sense of peace and relief for me, and at least I found a place where I can say that and be understood.

So sorry for your loss @coffeemonster28, I'm a new recruit to the boards - though I've been lurking for a year or so - and its reassuring to hear so many people say what a sanctuary this place has been.

So glad that you feel you have peace now, the relief must be immense.

I find accounts of terminal lucidity, where a person (usually with dementia but sometimes other conditions where they seem a shadow of their former selves) suddenly alters in the final days or hours of their life and speaks again and recognises people, very odd but weirdly comforting. Something science can't really explain, but it seems to suggest that the essence of the person isn't destroyed by the brain disease

Yes. I've nursed and sat with many dying patients, and I've seen this over and over again.

Even people with extreme dementia can seem lucid for a couple of hours prior to their death.

Or they look at you, and you can see real comprehension in their eyes, a comprehension which has been absent for literally years. I do find that to be a comfort.

@coffeemonster28 sorry for your loss. Hope you're managing all the admin and funeral arrangements ok.

Thanks to eveyone for the kind messages as well, this board has been such a support over the last two months. Wish I'd found it years ago.

Have people seen this thread?
https://www.mumsnet.com/talk/elderly_parents/5220024-dnr

That thread - the delusion. It's so sad doctors aren't having matter of fact conversations with people about CPR and exactly what it entails.

I was told quite frankly that my mum would likely suffer severe brain damage and broken bones.

Its strange isn't it. I think some people assume it is like in TV, where they do a couple of pushes on the chest and the person comes round and sits up and all is well.

I have had to do CPR on someone, and it really is a case of if the ribs arnt cracking your not pushing hard enough. Iv'e also seen the mechanical cpr machine being used, and it is brutal.

We have a RESPECT form for my mum, she has Alzheimer's and COPD, and weighs around 5.8. My hope is that her body gives out before her mind does

It's strange isn't it. I think some people assume it is like in TV, where they do a couple of pushes on the chest and the person comes round and sits up and all is well

Yes. TV shows like Casualty and Holby City have a lot to answer for.

The reality is that getting a ROSC is a highly unlikely outcome. Especially in a patient at the end of their life, with a degenerative brain disease.

Dementia at what stage though? My mum is in the early stages of dementia and, I think still has a reasonable quality of life. She still goes to an elderly person's keep fit class, sees friends and enjoys visits from family. She is of course deteriorating, but at this stage I wouldn't want to deny her a vaccine for eg flu or Covid.

I'd imagine about Stage 6 Alzheimers, which is when the person really falls apart - doesn't recognise close family, may hallucinate and show signs of agitation and distress, is usually doubly incontinent and may be struggling to feed themselves. I really can't see how doctors can deem that such a patient has any quality of life at all. At this stage you can see the sense in the old truism that pneumonia is the old person's friend.

@AInightingale My Mum’s progress through the stages of Alzheimer’s was frighteningly rapid and she was at stage 6 within two years of being diagnosed and lived for a further two years at this stage. It was horrific.

I’m really thankful the assisted dying bill was passed today because I really didn’t think it would happen. I understand there are several stages and at least two years until it becomes law so a lot could happen in that time. Sadly people with Alzheimer’s won’t be included and I’d imagine even people with a terminal
illness will still have a hard time. Anyone who admits to not wanting to be a burden will immediately be excluded.

No, this bill has nothing to do with dementia patients, although critics of it seem convinced that it does. For me, it's an entirely separate issue that needs its own debate. How many times do people tell their relatives to 'just put a pillow over my face if I go like that' - usually witnessing it in their own parents, and then thirty years later they are in the same position. DNR orders don't begin to cover it. If I could sign a declaration now to refuse routine vaccinations and treatment for infections should I ever be in the final stages of this condition, I wouldn't hesitate. To me it's just bodily autonomy, a basic human right!

Having extensive experience with the justice system I do wonder how long it will take for the high court judge to be available to counter sign the agreement. Because if it's anything like the criminal courts the people will be long dead

Also to get the doctors to agree to sign the document in the first place.

Totally agree. I’m not sure how on earth a high court judge will have the time to review these cases when the criminal justice system is already so gridlocked.

It will be someone's full time job, I imagine. Won't be the high court judge... they'll be the rubber stampers. The juniors will have the heart-rending, time-consuming, reviewing to do. 3 piles.. Yes, No, Above-my-pay-grade.

Will there be an appeals process, or are people expecting, "I want to die, it is my right for someone to help me" to end up as just a rubber stamp process anyhow.

Is it me misunderstanding the provisions of this bill, or are people opposed to it just being (wilfully) obtuse? Twitter last night was full of references to dementia - the Scottish politician Neale Hanvey wrote this:

After my mum passed away, my dad came to live with us. Over the following four years his care needs eventually became unmanageable at home and he was placed in a local care home, just around the corner. His final two years were during the pandemic and he slowly withered away to a tiny frail and helpless soul. The nurses at his care home were phenomenal, kept him clean, safe and comfortable and kept us regularly informed. I am forever grateful that they were able to let me sit with him in his final hours until he gently passed away. Never once did I consider that killing him would be a ‘kindness’. That level of end of life care should be available to everyone, but legalising state suicide or murder will render that less and less possible. Killing vulnerable people is not progress.

It's been made clear that the bill will not apply to people who have lost capacity to consent! A 'frail and helpless soul' cannot administer a lethal dose of life-ending drugs to themselves. I understand that people are uneasy that the law, if passed, will be modified or amended over time to include them (like Canada's), but these deliberate misinterpretations are really annoying me. Anyway, rant over.

@AInightingale i think some people have the concern that it’s a foot in the door. They worry that whilst dementia sufferers are not included now, they might be in the future - it’s far easier to amend an existing piece of legislation than to write a whole new Bill.

The trouble with including dementia patients in the future is that it'll have to be their loved ones who make the decision.
I can't see any government passing that sort of legislation. It would be too open to abuse.

@StiffyByngsDogBartholomew I agree and imagine there’ll be a lot of delaying tactics. The unfortunate individual will still get the long, drawn out and torturous death.

Yes @CaveMum. The Canadian situation does sound horrific and no way would we want that.

This is exactly what has happened! As you predicted, absolutely floored with some kind of winter virus. Can't stay in bed as the DC are still young and DH is working but trying to rest as much as possible, around arranging the funeral and so on.

Oh you poor sausage. Try to keep going on automatic pilot as much as you can and then try to arrange a couple of days to yourself when you can let everything out x