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

Following

Thanks for the new thread @StiffyByngsDogBartholomew

Stiff cups of all round!

Thank you, Stiffy.

How's Constable Oates today?
🤣

Thanks for the new thread.

I’ve had a snuffly nose, sore throat and cough for over a week now. I’ve come to the conclusion it’s either the weirdest virus or (more likely) my seasonal allergies have become non- seasonal, because this is how they usually kick off in March.

back when I thought it was the beginning of a cold, I was not panicking at the thought I might have passed it on to DM as I would have done last year. Then when I was watching a piece on the assisted dying bill I realised I didn’t even feel guilty at not being worried about passing on a cold to DM. A short bout of pneumonia would be a preferable end to the inexorable deterioration of DMs’s Parkinson’s and dementia.

There’s an “all life is sacred” strand of argument used by some opponents to the assisted dying bill. I do not agree with this strand of argument - life is precious and to be valued, but sometimes people may be alive yet they do not live, they exist. I suspect that modern Western society’s sanitised approach to death combined with an overconfidence in medical science and a dash of “there’s always hope” has made us too afraid to say we’re all mortal and a good death is something to value too

A short bout of pneumonia would be a preferable end to the inexorable deterioration of DMs’s Parkinson’s and dementia

Yes, agreed.

Except some idiot doctor would inevitably prescribe antibiotics.........

@funnelfan brilliant post and I thoroughly agree with you. The current bill going through parliament would be no use to my father at the stage he is at because he cannot make sound decisions.

I do think that anyone who has gone through an elderly relative literally being kept alive with zero quality of life at an astronomical cost - often to the public purse - will have some really valid contributions. Most of us can distinguish between someone with a quality of life - a many disabled people feel vulnerable to such a bill - but there will be safeguarding in place. I really reject the ‘oh it’s a slippery slope’ argument.

The dementia question is uncrackable isn't it. My step mother begs my father to kill her, but she does not have capacity any more due to having alzheimers. Even with assisted dying being a thing, some of the people who may need it most can never have it because of capacity.

I agree about the Assisted Dying Bill.

A lady I cared for had severe dementia, and she was very violent to her carers, most of whom were nuns. The lady screamed, bit, spat, punched and kicked us while we changed her nightdress after she'd been incontinent. She called out endlessly for the police in her distress. She was unable to stand or walk.

She had a DNR............

And yet they forced her to swallow Complan and Build-Up when she refused to eat.

She had frequent UTIs and chest infections, and they dissolved her antibiotics in glasses of hot milk.

I argued that all this was prolonging her life, which had zero quality at this point. I might as well have saved my breath.

What was done to her was abuse, in my opinion.

@TheShellBeach that's horrifying. I would never want to go like that. On this topic we seem to be kinder to our pets.

Yeah, the lack of capacity for dementia patients is a thing, and I’m in no way advocating for any form of euthanasia. But if more people did PoAs and/or expression of wishes forms when younger and fit that describes the point at which they would want to go onto palliative care only then that would be a start. A general culture shift to end automatically prescribing antibiotics for people like DM or the lady that @TheShellBeach described.

i understand the fears of disabled people when it comes to the assisted dying bill. I think it reflects the prejudice and discrimination that they’ve experienced. The opposite end to “all life is sacred” seems to be “only life that is perfect is valuable”. We saw the horrific outworking of the latter philosophy in WW2 and so the pendulum has swung firmly the other way to value all human life whatever form it takes. I think the tendency of doctors to treat and to keep people alive too long is a consequence of that.

Not sure how it can be addressed compassionately - I don’t want the pendulum to swing back again, just a tiny nudge towards compassion for those people suffering.

Kim Leadbetter is the guest on TRIP Leading this week. She talks about the Bill, and a bit about her sister Jo Cox. Well worth a listen.

https://podcasts.apple.com/gb/podcast/leading/id1665265193?i=1000677780016

Dementia is still the elephant in the room when it comes to assisted dying. In all the news and discussions it has hardly got a look in.

I do agree that many disabled people's views on this are shaped by a lifetime of discrimination.

I used to work for a disabled woman, and she was a disability rights activist. I met Liz Carr through her.

I can see where they're all coming from.

But there is a big difference between acquired dementia and lifelong disability, and the Bill needs to be shaped with this in mind.

Do you mean physical force was used to make her drink? That is certainly abuse.

They spent ages getting 100ml of Complan down, sip by sip.

They regarded it as a triumph when they succeeded.
Sometimes it took an hour for her to swallow it.

They said that they couldn't let her starve to death.

It was only when she lost her ability to swallow, four days before she died, that they gave up.

When MIL was dying of heart and kidney failure a care thought they detected a lump in her breast when bathing her. They wanted the GP to refer her for breast cancer checks. DH had to say no. She was non verbal and got really distressed away from her carers who understood her.

A friend of mine, whose mother had severe dementia, let her mother endure chemo medication for breast cancer.

The meds made her mother sick, but my friend said she "couldn't let her mum die of cancer".

FFS the clinicians who prescribed this stuff should have known better! They wanted to give her radiotherapy, but conceded that she wouldn't keep still.

Coming into new thread.

My mum wanted to get up today, so off I went explaining to her she couldn't and why. And who says so she demands. As if it's a conspiracy. She thinks she's somewhere she hasn't lived for twenty years.

I bitterly regret giving her the antibiotics two months ago that made her "well" and have resulted in her having such a low quality of life, but regularly forgetting about it, then going through the anguish of being made aware all over again.

She eats and drinks so little now.

I hope it doesn't go on for too long for both our sakes.

A short bout of pneumonia would be a preferable end to the inexorable deterioration of DMs’s Parkinson’s and dementia.

Definitely this. My dad is end stage Parkinson's and when he went into the care home last year his PD nurse did say that it was the beginning of the end but that we just don't know how long the end will take. Somehow he's been there over a year but visits are heart-breaking.

@TheShellBeach Thanks for explaining. For what it's worth I think it would be very difficult for carers to allow someone to effectively die of thirst. It goes against instincts to make comfortable and nurture. I understand what you are saying, but I think it would require a very different kind of person to not give fluids in order to speed up death. I don't know that complan was a good idea, but then again slow starvation is pretty awful too. I do understand how pointless and cruel it seems to prolong the life of someone terminally ill who is suffering, but I suspect that carers/medical staff are not emotionally equipped or prepared to hasten people's death either. Such a sad situation.

@TheShellBeach That's horrific.

I think there's a big difference between giving someone water and trying to build them up by almost force feeding them complan when they're reaching the end of their life.

abusive and unnecessary ( especially if putting antibiotics in hot milk which makes them less effective, they shouldn’t be heated or given with milk as this binds to the drug), if we actually nursed people well at the end of life we would have far less challenging end of life situations. This is never going to be the sort of patient who is given assisted dying though,..the bill only covers a small section of people who are still physically able to take the medicine themselves. I’ve been in to visit people at end of life who are still being given antibiotics (which can cause dreadful, excoriating diarrhoea)rather than let that person pass from the infection, some care settings don’t understand appropriate prescribing in terminal illness. Harold Shipman has a lot to answer for in terms of withholding appropriate pain relief / other medication that would allow that person to pass more peacefully.

@GoldenSpraint Yes, not sure why Complan was given.

For what it's worth I think it would be very difficult for carers to allow someone to effectively die of thirst

Yes, a lot of carers struggle with this, but that's what good mouth care is for.

I was a dementia specialist nurse and matron of a care home.

When people reach the end of their lives, we need to allow them to die in peace, not prolong the agony by effectively postponing the death, by encouraging tiny quantities of milk-based feeds, which inevitably postpone the death.

I feel very strongly about this.
When I worked in the community, I met countless carers who were unwilling to let death occur. And I mean in patients with end-stage dementia.

It's important that we talk about this. Good terminal care never includes anything which artificially prolongs the dying process, to the detriment of the patient.
It's all about comfort. And that's as it should be.