To think this is the most awful thing to say to a parent

Not ideal for her to say but I understand the emotion behind it after caring for someone with an illness similar to that.
My parents have said they would rather end their lives or die in a grand/fast fashion than have a long drawn out illness requiring me /my sibling to care for them

Oof. Dealing with a parent with Alzheimer’s is nothing but stress, but I’d never have said that. 🙄

Strangely, the main affects are on the relatives. The person with it doesn’t understand what’s been lost.

Do you want a friend or family member to go to prison for complying with your request?

It was the same with me and my Mum. My Dad also tried to cover it up. However, I don't think an advance directive is legal in this country.

And?

People glibly talking about ending their own lives. It's not that easy in reality.

This. It's easy to say these things but not so easy to do. I say this as someone who would rather be dead myself than suffer from dementia.

I haven't been through it but in general I'm in favour with assisted death. The way we treat elderly people who are suffering versus elderly animals who are suffering is very wrong IMO. I don't know the specifics of the legal situation but I am hoping to sign a document before I age, that allows me to be weaned off any medication other than pain relief once I hit a certain age, or when I am unable to live independently. Then I will die naturally. As far as I can tell there are 1000s of elderly people living a half life on tens of pills every day just to keep them functioning for no purpose. The pharma companies are only laughing at us. If you are at the stage that you are immobile, in nappies, spoon fed soft foods only, and drift in and out of sleep with moments of lucidity then it's your time to go. I don't know anyone ever who said they would like to linger like this. I've asked many, and everyone says it's their worst nightmare. Despite this we keep torturing them by finding more and more ways of extending the misery. I'm talking about ageing in general but I can make the same points about dementia.

An advance directive is needed because when dementia sets in there is - obviously - no capacity or indeed ability to get anywhere.

Mil was in total denial, aided and abetted by fil. In fact he was covering for her for ages such that the family were not aware of the true extent of it. When bil involved the GP the pil were furious.

A pp said they worked in a dementia home and work hard to give patients a nice experience. That’s as maybe, but imo sitting all day in a nappy, moaning, not knowing your dh, your dcs or even your own name is horrendous .

Plus, the things I found hardest during the terrifying post concussion syndrome was the fact I had a total awareness of my limitations and decline in my brain's abilities. It was the contrast of the sharpness of the rude health compared to the awful struggle of the broken body. I can fully understand why people like that poor man the PP described as shouting for help would feel, and how distressing it must be.😢

Which is illegal

I've had a stroke & am now on a cocktail of medication. Possibly the easiest way for me to end it all (not something I'm contemplating while my mum is alive) is to just stop taking the medication & enjoy my life (the medication makes me very unwell & so I'm unable to enjoy it at all, at the moment)

HOWEVER what terrifies me is having another stroke. An even worse one & surviving it.

im not strong enough (mentally/emotionally) to end my life myself. I don't think I could convince somewhere like dignitas to help me.

But while my Mum is still alive it's not something I need to spend my time thinking about.

and despite life being pretty shitty, I'm not ready to throw the towel just yet. Definitely not before the FWC final!😂

(If you don't laugh, you cry)

My grandma died with multiple dementias, she weighed half her adult weight and was in nappies for the last few years of her life with no clue what was going on except for a profound sense of indignity.

My mum has made it very clear if she gets the same diagnosis she will buy the finest bottle of champagne and wash it all down with pills. I support that. In fact I think extreme cases of dementia should be on the assisted dying list. There, I said it.

The other thing to say, and I hesitate to say this, as I know it's not the majority experience or even maybe that common, and I fully, fully agree with the cruelty of dementia as a disease, but it is wrong in my mind to lump all dementia sufferers together and to say they all have a terrible quality of life. Some do of course, but in the early stages many people still are able to live fulfilling lives. And some people are lucky enough to maintain a reasonable quality of life throughout - my MIL had honestly the best dementia experience ever, she wasn't an easy or particularly contented person before the diagnosis, she'd had a hard life, but the more the disease progressed the happier she seemed to get, she was lucky of course in being able to be cared for at home initially with lots of loving local family, and eventually in a really good care home, but even when she'd completely lost her memory and nearly all cognitive ability she was never anxious or angry, she always had a smile for everyone, loved a laugh and seemed to basically be in a happy haze. Very, very hard for her children and family, particularly hard to adjust to such a drastic personality change in the opposite direction to how she was previously, but really hard to say her life was worthless when she seemed so happy. I know this is absolutely not everyone's experience but again just illustrates the difficulties in a one size fits all model...

So what do we do with the people that can't afford to jet off to Dignitas?

My Dad used to say that if he let a dog exist in the state my Nan with dementia did for the last two years of her life he would be jailed.

Dad sadly developed dementia and ended up in care. There was a poor man in the next room and all you could hear was him calling out help me. Please God somebody help me. His poor wife was always there with him. Dad died but three years later another family member ended up there, sadly. When I went to visit that poor man was still calling for help and his poor wife still sat there holding his hand. Inhumane for both of them.

It was due to her own parent I think that's quite different to a more distant relation or family friend saying it to someone close to the family member.

It's totally not ok to say that. Any illness makes you a burden, in the eyes of some, and this society is so nasty towards disability as it is.
I do agree with many posters that those who want to should be able to have their life ended (like dogs), and we should all be allowed to put it on our medical notes, rather than HOPE we're well enough to go abroad. Abortion is now legal-in spite of those people who say the woman should just put up with it for 9 months and have the baby adopted-so why should people be forced to live with the hell that dementia can be for years?
And I'm aware SOME people with dementia seem happy and have some good days with their family-one spent an afternoon doing amazing stuff with her grandkids, supervised of course.

I understand why people say this. Dementia is one of my greatest fears too, and everyone has the right to think about what they would want.

But having cared for my mum through over 10 years of dementia, I don't think it's as simple as saying, "I'd end my life if I was diagnosed."

Yes, there were some very difficult days. She eventually needed four carers a day, and it was hard on all of us, and awful to see the lack of dignity that she suffered at times too. But what people often don't see is that there were many more days when she was genuinely happy. She'd forgotten so many of the painful things that had happened in her life and was content in her own little world. She laughed, enjoyed company, and we had precious extra time with her that I wouldn't swap for anything.

I know not everyone with dementia has the same experience, and some forms are much harsher than others. But that's exactly why I struggle with blanket statements that everyone should end their life after a diagnosis. A diagnosis isn't the same as the end of a meaningful life. There can still be joy, love, laughter and moments that matter—for the person with dementia and for the people who love them.

I agree with you OP.

No one is obliged to provide care. You can refuse to get involved with the care of a parent.

There are lots of incurable diseases that are awful in the final years, months and days. Some diseases are harder than others. Are we suggesting that any disease that makes it hard, the person should just off themselves out of a sense of duty?

And if not every disease, then which ones are ok? And who gets to decide what level of frailty of dependence isn’t too much of a burden?

Getting old and sick is awful. If you personally want to avail yourself of Dignitas-type services, or even do a DIY job, that’s your choice. I don’t think anyone is disputing that.

But saying to your parent “if you start to become a burden I expect you to kill yourself” - I think that’s absolutely awful. None of us owe another person the duty of killing ourselves.

And when do you do it, exactly? While you’re in your fully aware state? Well that’s great but you might end up losing months or possibly even years of an enjoyable life. And why should you have to give up the most precious thing any of us have just to avoid inconveniencing others?!

But if you wait until your disease starts to progress, you’ll lose your insight and awareness and probably won’t do it. It’s really not as clear as people seem to think.

And just for full context, I cared single-handed for my dad until his death from Huntington’s Disease which in his case, included aggressive dementia-type symptoms from very early.

And I now care for my mum who has cerebral palsy and mixed-type dementia. She lives in my annexe.

So I say all of this with a very intimate understanding of what it’s like and what’s involved.

I imagine the sister was speaking from grief, so I’d cut her some slack for that reason. But her mum is obviously grieving too and I think the sister has been pretty thoughtless here.

Where in the world would you be able to get that though? I imagine that there are very limited countries that would allow this to happen as one would want.

YANBU, OP. You could tell a relative that if they developed dementia, you wouldn't be able to care for them, but you should never tell anyone that they have a responsibility to end their lives to avoid becoming a burden. That's a terrible thing to say. Sadly, the prevalence of such views is one of the main reasons that several UK governments have felt unable to legalise assisted dying.

And yes, before anyone asks, I have seen several of my relatives develop dementia and progress to at least stage 6 of the disease.

It's a terrible thing to say, but sadly I agree. Having had a head injury and post concussion syndrome a decade ago, I had an "Alzheimer's" moment when I couldn't recognise my own street, which was terrifying. I'll be either heading to Switzerland or jumping off the cliff in Sheringham! I think it's kinder to only put myself through the hell, rather than my poor family and DC.

She could have been more eloquent, but as you see it's a popular opinion. My parents have decided to luckily my mum was a pharmacist and squirrelled stuff away and my partner has said the same. I will decide nearer the time

I want to go, but as others have said, picking your moment is hard. Too late and it’s…too late. To early and you could miss out on years.

This woman did it - drugs in her own bed, which is so much kinder than the public graphic ways, but less guaranteed to work. My friend is considering an air embolism but idk how reliable it would be.

https://www.theguardian.com/books/2023/aug/20/mother-planned-own-death-natasha-walter-before-the-light-fades-suicide