So bloody exhausted waiting for someone to die 4

The whole point about Dignitas and dementia is that you have to go very early on whilst you can, and potentially miss out on a few years of being "okay".

I think that's the tragedy with going down that route.

Some people complain if their loved one is not kept alive by any means possible.

My mum was dying of cancer at the same time as a colleague's gran. I felt it was a blessing when mum was put on a morphine pump near end of life, it depressed her breathing and she slipped away peacefully with no pain. Probably did shorten her life by a few days, but those days would not have been "good" days.

Colleague thought that her gran should not have been given as much morphine, that the end of life health visitor had decided her gran was going to die and that was it. She passed away peacefully with no pain. Colleague got all sorts of official Inquiry going. Not sure what she wanted her gran to go through for the sake of maybe a day or 2 longer on this earth. It is not as if she would have got better, got pain free, suddenly able to get out of bed or enjoyed life.

Hey everyone,

Can I join? Reading the previous posts has made me feel less alone, didn't know they existed!

DM (who I love to bits but was/can be very verbally abusive/manipulative) was diagnosed with end stage liver disease 4 years ago, and told she had 6 months to live... she moved in with me and my DS so I could care for her... and is still here!

To be fair she has a reasonably good quality of life still, but is deteriorating slowly. Often I feel like she is showing the world the best side of her/fighting the disease when we venture out - which is great, of course - and then at home it's all incontinence pads/messes/medication/arguing about wether or not she needs an ambulance in screaming pain/refusing to eat unless it's EXACTLY what she's in the mood for (which is never healthy, good for her, or enough!)
She refuses the ideas of carers or any type of respite because she doesn't believe she's as ill as she is, and I think if I try and 'force' the matter she'll cut ties and try and manage on her own - she's good at putting up a front 😬

There must be some sort of Code of Practice for care homes. I know that my DM’s care home will do everything to ensure they there were deemed to have done everything to keep the resident in their best contextual health otherwise they may be sued for negligence or even face prosecution. Wasn’t a care home manager arrested recently? (And released without charge).

'Going to Dignitas', which is in another country, will rarely be achievable for an elderly person with dementia.

But as it is a terminal illness, why can't we make our wishes known when we are younger and have full capacity? DNR orders are one thing; surely we should be able to make a declaration that we do not wish to be treated with antibiotics or vaccinated once we have passed Stage 4 of the disease or whatever a suitable cut-off point might be. Prior to Shipman, I'd imagine many compassionate doctors took this approach anyway.

My DM always said she would go to Dignitas but the PP is correct: dementia is slow so they don’t realise it’s happening until it’s too late. She is now in a fantasy world where she can get out of bed to go to the loo whereas the reality is that she’s 89% paralysed and can’t sit up in bed in her own. She also has now developed a bacterial infection so the doctor has prescribed antibiotics. It’s interesting to hear what another PP said about the side effects of antibiotics in the elderly.

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.

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”.

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.

@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.

@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 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'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.

@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.

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

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

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.

Sending hugs @PatchworkOwl

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?

@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.

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!

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

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

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.

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