So bloody exhausted waiting for someone to die 4

Oh I'm sorry @PatchworkOwl that's very sad for you.

I'm spending this afternoon with my grandmother (she's in a nursing home now and on end of life care).

The nurse says she has been refusing liquids today. She does seem to be without pain, thankfully, and they have meds ready.

She's mostly unresponsive and has been turning away from me when I speak or lean in so she can see me. So I'm sitting here, not speaking, listening to all the residents and carers around us, trying not to cry. I so miss who she was ten years ago.

Regarding food and drink, I think offering and even mild encouragement are warranted, and assistance given if the patient wants it. However, my (entirely lay person) theory is that if someone is refusing food and drink, it is a sign that their body is naturally winding down.

DM went from 11 stone to 7.5 and was the trigger for me to take her to the GP as Things Were Not Right. She said she just wasn’t hungry any more, so she was skipping meals. Now if food is placed in front of her, she’ll eat some of it, but only a few mouthfuls. Same with drink - I’ll offer and she’ll ask for a cup of tea, I’ll place it in her hands and she’ll say thanks but she’ll have one mouthful and then it goes cold. If I gently encourage her by asking if the food/drink is alright or if she wants something else, she’ll say no she’s had enough. Either her body isn’t sending hunger and thirst signals any more, or her brain isn’t receiving and interpreting them correctly. Although she does graze on biscuits all day which probably form the majority of her daily calorie intake. It appears that sugar cravings are in a different part of DM’s brain than hunger and thirst!

I’ve said to her carers that it’s important to me that she is offered food at every visit and that she always has both a hot and cold drink to hand. Whether she consumes them is up to her and probably one of the few things left in her control. I am certainly not going to agree to any form of involuntary feeding if she stops entirely.

🤣🤣🤣

@TheShellBeach I do believe if a person refuses food and drink, by saying no, shaking their head, or closing their mouth etc. that wish should be respected. I also think if food/drink is offered and the person seems to want it, then it should be offered, even if it takes an hour to consume a small amount. I think if a carer is saying ' drink this, X, I'm not leaving you alone until you do,' that is very different to a carer saying 'would you like this drink, X?' I am not quite sure from your posts how the nuns/carers were giving drinks, but it sounds like they used some kind of verbal coercion which is completely wrong.

I suppose the other issue which comes to mind is the difference between not artificially prolonging the dying process, and actively hastening it along. The latter is something which I do not feel those in caring professions should be asked to do. If they do not offer food and drink, then I think it is hastening the process.

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.

@GoldenSpraint Yes, not sure why Complan was given.

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.

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.

@TheShellBeach That's horrific.

@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.

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.

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 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.

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.

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.

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

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.

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.

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

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.

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

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.

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.