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

[Kate8889]

My mom has a husband she's been with for about 12 years, they're in their 60s.

He has a sister and their father recently died after a very difficult few years of Alzheimer's disease (he was physically combative on the daily).

This sister (in front of everyone) told her mom that if a person gets a diagnosis such as Alzheimer's it is the person's responsibility that they don't become a burden on their loved ones and they should end their life. I cannot imagine saying that to anyone but especially my parents.

I agree we do sometimes have a problem with overtreatment/over medicalization of the very old and frail, and there's a space for more and better conversations about moving to comfort focussed care, more treatment at home, how to plan a good death, advance directives and DNACRPs etc (and have also sadly witnessed futile and ultimately harmful attempts to save an elderly relative from what could have been a gentle, slipping away kind of death, much deserved after already long suffering - not CPR but unnecessary hospitalisations, antibiotics etc - I'm sorry you had to witness something similar too, it is awful).

But I think it's so much more complicated than just enforcing some kind of universal palliative plan for everyone who has lost capacity - people without capacity are not some homogeneous mass, there's young people say with a severe learning disability meaning they couldn't begin to make these kinds of decisions for themselves but who have great quality of life, are we saying they get the palliative only plans if they get pneumonia or similar (not uncommon given comorbidities of many common LDs and genetic illnesses)? What about previously capacitious adults but who lose their capacity suddenly, not necessarily through organic disease like dementia but accident, trauma, self harm, drug overdose - their life may not look the same as when they have capacity but many of these people are well capable of expressing an opinion on their quality of life and they'd say it's good - are we going to deny them life saving fluids, antibs etc? That's before you get into religious and moral/cultural differences on the part both of the patient and the staff treating them (where does such a policy leave a clinician who abides by 'first do no harm'), and the difficulties of properly assessing capacity for such a momentous decision etc etc. There really are no easy answers is the problem!

Realised how inappropriate I was. Sorry.

I am the carer for DH with dementia. I do not beleive in euthanasia. DH does still do thing he enjoys. He has some quality of life. The cost for us as a family though is very high

Insensitive perspective for sure...
But hypothetically how does the sister expect someone with cognitive impairment to make a decision about that and act on it?

Her delivery was awful of course but have you cared for anyone with dementia. After 10 awful years with my mum who was diagnosed when she was only 60 I would absolutely want to die with dignity on my own terms and not end up being a shell of a body in a bed unable to speak, recognise family, eat by myself, walk (for 2 years in my mums case). My sister felt the same . And when my dad got lung cancer he was relieved that is how he was going to go. It’s beyond horrific losing someone to dementia . I suspect her has already thought of what she would do

I agree with you wholeheartedly and am quite worried by some of the things I’m reading on this thread.

One of my concerns about assisted dying is the possibility of creating a kind of consensus in society that ending it is what we all should do if we have certain conditions or disabilities. And here we see it; people supporting a woman who has told her own parent that she should kill herself if she gets dementia, and only mildly criticising her for ‘the way she said it’. It’s an appalling thing to say.

I thought this about my mum but then the last 2 years she was a basically a body being kept alive. It was horrific and inhumane. I hope this is not the case for you but please recognise it is the case for a lot of people

Both are easy to obtain.

We know it’s illegal. It can’t be that difficult to let yourself into a friend’s house and ‘discover’ that they have taken their own life?
In a previous post you say no one you have diagnosed has managed to do it.
As someone who visits a dear friend I ve known since we were teens, diagnosed with dementia and newly admitted to a care home, no, no, no, not for me. She can’t string a sentence together, doubly incontinent, can’t dress herself, is prone to angry violent outbursts etc, etc, BUT she knows she’s locked in and bored out of what mind she has left.
She’s well looked after don’t get me wrong, but bloody hell what a way to live. Like being in an airport but your flight is never called cos you’re physically healthy and if you get pneumonia which would lead to your flight finally being called, the lovely Gp will come and give you antibiotics aaaand you’re back waiting for your flight. At least in prison you know how long your sentence is.

I would have agreed with you until I looked after a relative. Not dementia related, but in the end they were bed bound, double incontinent, almost blind, but of sound mind so were well aware of what what happening. It took 9 long and painful days for them to finally die. An animal would not have suffered like that. If they had known what was to come, they would have ended it.

She shouldn't have said it but I'm guessing your mums husband is now pretty clear that he will have caring responsibilities instead of his sister if the need arises?

Many people have said the same, but HOW? It's not that easy.

The person's decision. Not on to tell someone what they should do. How awful if someone has strong views against suicide (maybe religious) and are being made to feel they should go against their own beliefs/conscience. If you want to do it crack on.

bit brutal but she has a point. I can't imagine becoming such a burden on my kids and ruining their life because they have to take care of me.

I suppose hospice and retirement houses are the only answer, what else can you do

All these people saying that would end their life I don’t believe you. I think you would be sacred and clinging to life fearing death.

Well that's the crux of an assisted dying bill.

If I can't pay to die with such a disease, I'll be looking to take my own life, and i fully appreciate that that will traumatise those dealing with the aftermath.

Im not sure id be one to worry what my mums husbands sister said to someone else

I shall end my life if I have dementia - no sign of it yet! My dad was a monster and had a sexual interest in my body. I got away from him and rarely think about it now. But I know that in dementia you can't remember your breakfast but your childhood is remembered and relived, and I'm not going through it again and again, wondering if anyone near me is my dad coming for me.

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

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

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.

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.

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.

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.

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.

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.