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

@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.

Well he was alright until My Beloved Harold stole his helmet

🤣🤣🤣

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.

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.

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

They used to call pneumonia "Old Man's Friend" because it was a less horrific end.

Over the months my mum has been eating less and less. She's down to maybe half a sandwich at lunchtime and maybe a slice of toast later in the day, if that.

My view is that if she asks for something - she does ask a couple of times a day for water or coffee although she doesn't drink all of it - then she gets it. If she doesn't ask, then I leave it.

Before the last infection, I'd been encouraging all sorts of food and drink to keep her going, because her mobility would have been affected if I hadn't. But the infection wiped out the last bit of her weight bearing abilities.

Now she's receiving palliative care I agreed with the nurse that it's fine to not encourage, and to only respond.

Mum and I spoke years ago about what she wanted the end to be like, and she was adamant about not being kept alive whilst she had no real idea what was going on, which is the situation she's currently in. (She actually asked me to put a pillow over her face if she ended up how she is now!)

So I'm not going to encourage prolonged life in any way.

Luckily before she became so confused she had a care plan drawn up that stipulated no inteventions of any kind, and a few doctors have said how good that was and that more people needed to have a strong plan in place. And thankfully I have full PoA.

The pneumonia vaccination is something I struggle to think is a good idea for people who are elderly.

I don't think any vaccinations should be offered to people with dementia.

I think you're right. It's down to you and others on these threads that gave me the courage to refuse covid and fly vaccinations for my mum this year.

I refused. And the sky didn't fall in!

@PatchworkOwl I’m so sorry to read your post. I hope the coming time passes peacefully. Would reading help? Reading aloud will help you to focus your mind on something else and the sound of your voice might be soothing to your nan.

Sending you much strength.

Thanks for your kind messages.

We used to talk a lot, but she has been turning her head away or closing her eyes when people speak, so I think she wants the quiet now.

I think she's telling us she's ready to go. But it's looked like she was about to die so many times I've lost count. Maybe this time is different?

Sending hugs @PatchworkOwl

Thank god I’ve found this thread. My mother died of dementia in January. The last four years of her life were appalling and the last six months were even more horrific. I am still so utterly raging that she had to endure what she did. From the point that she started getting memory loss she knew what was coming and always asked me to ‘suffocate her with a pillow’ when the time came.

She went into a care home in 2016 and had an ok quality of life (as far as anyone can in a dementia care home) until Covid hit. They then locked the residents in their rooms for the best part of a month, as if death from Covid was somehow to be avoided, compared to the gradual starvation and immobility of advanced dementia. She didn’t leave the care home for nearly 2 years and after Covid happened she didn’t know me anymore. She’d lost her speech, her mobility and her continence.

She spent the last two years of her life sitting in a chair or lying in bed, making monosyllabic noises and getting thinner and thinner. I stopped all vaccines and any treatment for any illness and yet she still held on until she died quickly and fairly suddenly one night in January.

Having seen what she and the other residents went through, there is no way I will ever do that. If I get dementia I’m either off to Dignitas on the next flight (depriving me of a likely good few years with a quality of life) or I shall kill myself. I will not live like my poor poor mother. It’s barbaric.

Why I can’t have an advanced directive to allow me to be given a lethal injection in the future, in certain circumstances, is beyond me. The idea that all life is sacred is utterly false. I just assume that all those opposing assisted dying have never seen someone die slowly and miserably for years.

Thanks for the new thread. I’ve read all your comments and 💐🍫🍪 for everyone.

I'm so very sorry @DappledOliveGroves
You've clearly had a terrible time over the last few years.
Vent here all you like.

@TheShellBeach thank you. I can't talk about it in real life without crying as soon as I mention anything about the whole god-awful process. I was 28 when she was first diagnosed, so it's been a hellish process. My father died when I was a teenager of cancer and I'm an only child so it hasn't been much fun. The assisted dying debate is making me so, so angry. Watching my father die from cancer, in excruciating agony, wasn't great, but at least it was only a few months. Watching someone die of dementia was 1000 times worse.

@DappledOliveGroves I'd also want to go to Dignitas if I ever developed dementia and have money set aside for this. The problem with dementia is you only have a small window of opportunity in which to act. It's not a case of getting on a plane and booking in. There's a huge amount of paperwork and I believe the person's GP has to submit a report. I can imagine many doctors stalling and using delaying tactics knowing full well it's only a matter of time before the person loses capacity and forgets about the whole idea.

@DappledOliveGroves I'm glad you've found the thread. I'm quite new here but have been a carer on and off for most of my life. I wish I'd known places to talk like this existed.

One caring stint was done in my 20s, it sounds like you also did this (?) It was particularly shit as everyone else around me had fun, moved on in their careers, lived their own lives, etc. Do you still think about what could have been? I've found myself thinking about it lately as I sit in the quiet with my grandmother.

Watching her die slowly of dementia these past few years has changed the way I look at life and death. We don't talk about it nearly enough.

@DappledOliveGroves I'm sorry for the loss of your mum, that sounds so hard.

In a very gallows humour way I was thinking about the difference in the way we treat our pets too. We have a very elderly cat (18.5 years old) who has started on a steady decline. We've agreed with the vet that we will not give her any life prolonging treatment above and beyond making her comfortable and that when she lets us know that she's had enough we will make that heart breaking decision because it is in her best interests. Bizarre that we don't afford our fellow humans the same chance.

@DappledOliveGroves So so horrific what they put your poor mum through. It's barbaric how dementia is dealt with. Xxxx

A friend of mines father took himself off to Dignitas as soon as he was diagnosed with dementia. He would have had a few good years I expect but had to act fast otherwise it wouldn't have happened.

My mum's aunt, and her grandmother had it, and that's why, when she was of full capacity, she was so terrified of it.

I have plans to kill myself, but worry I'll leave it too late.

I have a (probably misplaced) hope that by the time the generation of people aged in their 40s and 50s now reach their 80s, say, that there will be some way of arresting or preventing dementia. Some unforeseeble breakthrough. My grandparents' generation lived in terror of tuberculosis or other untreatable infections and yet by the 1960s TB was in retreat.

Absolutely this. DF was very vocal on the topic - he had a younger sibling die of cancer when he was a young man, and by his account it was very distressing at the end. DF was convinced his dad had instructed the doctor to help his sibling on the way, and said if he did it was the kindest thing to do. It was just after the war when I think this went on quite a lot - isn’t King George V meant to have been “helped” by his doctor?

Fortunately for DF, although he had a couple of strokes in his last few years, his cognitive and physical decline was relatively minor compared to DM, and he was still doing the crossword in the paper the day he was admitted to hospital for the last time. Less than 48 hours from hospital admission to a quiet death as he slipped away in the night from acute ischaemic bowel. He would have classified that as close to a “good death” as you can get I think, after what he witnessed as a young man.

I can’t remember which poster said it recently, nor which thread, so I apologise for the lack of attribution, but I heartily agree with the sentiment that recognises the blessing of being able to say in an obituary that someone died “after a short illness”.

When people say they'll go to Dignitas if they get dementia it makes me sad. Sad because if it happens there is a good chance they won't. Dad because it's quite common for people to forget they have had the diagnosis within hours so they are not able to make that decision. My own mum is 4 years past diagnosis and is convinced she manages her own finances ( brother dies), convinced she manages the house fine ( we got a cleaner in desperatio). She lives in a fantasy world that only has touch points with reality and is convinced there is nothing wrong. I was at an event with someone from The Alzheimer's Society 2 years before diagnosis when it was obvious there was something wrong and she warned me that this is really common and to plan assuming this would happen.