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

Sometimes people say stuff in the heat of the moment. They’ve just lost their dad and been through the horrors, anything she says now she might feel differently about in the future and even if she doesn’t it’s her opinion after a tough time

You're not unreasonable OP. Awful thing to say. It's this sort of attitude that makes me pause about asssited dying, because although I'd like people to be able to access it (and would quite possibly want to do so myself if it came to it), I hate the idea of people feeling pressured by family members and societal expectations. What we want for ourselves is always going to be shaped by the wider culture and in these days of ageing population and difficult government finances, I fear the culture is only going to move one way on the value of unwell people's lives...

It also sucks because people with Alzheimer's and other types of dementia don't all have the same trajectory. People can sometimes have many really good years. If you're lucky with the progression, and get access to the right medication, technology and social support, life can still be worth living by a lot of people's standards. I know that can be hard to believe when we see how bad it can get, and I don't want to minimise it. Whether it's violence, sexual disinhibition, suddenly sharing horrific views, or just withdrawing from reality so far that it seems like people are left existing and not living, there can be so much that is awful about living with this or seeing someone you care about in that position. But also that isn't the whole story of Alzheimer's. I've been humbled to have my own assumptions challenged by some of the people I've met and the amazing stuff they're still doing with their lives.

It’s partly because of people like your sister in law that I couldn’t agree with the assisted dying bill. She’d probably be pressuring her parents to request assisted suicide because she can’t be bothered with them.

I know what I’ll do if I ever receive a dementia diagnosis. That’s right for me, but I could never pressurise someone else over it.

Same here for me. There's no coming back from an illness like this and no point going on. It's cruel for family members and friends to see my decline. I would want the quick exit.

Some people fundamentally think we should all be very independent, (Americans are often like this) and some have far more cosy family relationships. There is no way I would say or think that but I have wonderful, kind parents who have been married to each other and got along well for almost 60 years. Not everyone benefits from that kind of support.
I should add that my parents would never want to be a burden but I would happily take on the burden because they could not have been better parents and I love them.

Not in my experience, people tend to notice her DW/DH/DM&D early signs and plenty of people get diagnosed while they’re still able to retain a lot of short term memories

It’ll probably be that she didn’t need to do anything during her dads illness and she was barely there -

But caring or even just watching someone you love lose themselves to dementia is horrible. She’s likely been through something really traumatic. They/you all have, so I’d try and cut her some slack and not judge her

The difficult thing with this is the WHEN you end your life, as my dad has Alzheimer's and my mum has a difficult time with him but he is still so cheerful and loving ( I know we are so lucky as for some behaviour can be violent) and when my husband and I discuss this in an abstract way for the future (for me), he asks if I would have denied the last 10 years of his life to me and my kids who still get to see him and love him, if he had committed suicide on his diagnosis 10 years ago my kids would not really remember him at all, but equally he is far beyond the ability now to do anything to himself and mum would never want to discuss this topic at all. So we know that the last few years will probably be much worse but we can weigh this up against the years that really weren't so bad. It is a very difficult and emotional subject for me, as I want to keep him ( selfishly) for as long as possible for me, but don't want my family to have to do this caring for me if needed in the future.

Not neccessarily. A lot of people are still mostly compos mentis when they are diagnosed.

Oh that's a good plan. I'm with you there.

Please don't tell anyone irl, you could get in serious trouble for assisting a suicide.

And that is why people are extremely vulnerable if the “right to die” legislation was passed.

It will be too late by the time you've received such a diagnosis.

IF anyone could prove beyond all reasonable doubt that I or my friend had witnessed the death, which in itself is not illegal, what will I or my friend be prosecuted for?
Im not going to assist her or her me, our pact is to be together if one of us is in the situation of being diagnosed and wants to take an early flight before they all get cancelled. To not be alone at the end in this era when so many of live alone and some of us might not have a conversation from one week to the next.
Im not advocating what anybody else should do, I’m sharing what a friend and I have planned should it happen to either of us.

Don’t be cross with what she said. She’s grieving. Shes seen dementia at its worst. Her sentiment is understandable, the delivery probably a bit off but grief stricken people do say strange things.

The best piece of advice anyone gave to me when my dad died was to be prepared for people to do and say really out of character things. It proved to be correct. It sounds like it is in this situation too, so try not to judge her too harshly.

Even expensive care isn’t really a nice or enjoyable life for many of the disabled / elderly people We have sat in homes.

Just a long drawn out gods waiting room. Dinners at 5pm communal for all tough shit if you don’t want it yet or don’t fancy bangers and mash or some soft soft food made into the shape of sausages and mash.

No you must all sit in the communal room / games room. Not allowed to just “chill” in their rooms.

Sitting in nappies or on pads as the main go to rather than them being a back up and taken to the toilet often enough. Moved every so often so try and help stop sores. Watching some old no doubt bbc show stuck on Chanel 1 all day long. Someone’s lost the checkers as they have thrown the board in a fit.

Yes not all care homes are like this but a bloody lot are because it means they need less staff as everyone is all together. Don’t suppose hearing poor Doris shouting for her husband who died 16 years ago or John shouting he wants to die is nice for the other residents either.

And if that's your choice, that's fine - I feel the same. However I wont be telling my FiL (whose just been diagnosed) that its his responsibility to off himself so as not to become a burden. Its not what he wants, its not what his wife wants and its not what the rest of us want for him either.

One thing is choosing for yourself. That's quite different then telling other people theyare no longer worthy of life.

Ah Ooops all the typos sorry

Anything neurological is awful and mostly a struggle, though. It robs you of so much if you can't access the full capacity of your brain/mind, and understanding this is probably very difficult unless you have been through hell either suffering from of caring for a someone with it.

Of course, I think there will be some who don't have as much of a dreadful time as others, but says something telling when people like Robin Williams decide not to join the group who struggle with a mental and cognitive decline. He must have felt genuine fear to not have to suffer with Parkinson's then dementia. I fully understand why he was worried.

Some rather ill researched about Dignitas.
People should read up on the level of filters you have to pass, and how dementia precludes passing most of them.

The problem is our society, not dementia irself. Living with my own parent who has dementia, the opportunities for togetherness and live and enjoyment are like nothing I've ever known in her previous 84 years.
We need to reframe dementia as a "new normal" rather than an obstacle, and be throwing more services, interventions, education, and tolerance at it.
Just like the saying "it takes a village to raise a child", if you can actually access a village, then it can direct itself towards living care for this brain condition.

Sadly, few people in the western world have that village to hand any more, and are forced into a complete pressure cooker of caring with limited respite and curtailed means.

Presumably you don't think this is OK, though? That people are literally considering offing themselves to save money?

Even if they would rather have you alive than dead?

'it is the person's responsibility that they don't become a burden on their loved ones and they should end their life.'

You empathise with this sentiment? What is wrong with you?

People can die dreadful deaths from say, cancer/motor neurone disease etc. Their loved ones are often left traumatised when the person eventually passes. At what point should the person be told it would be better to kill yourself than put the rest of the family through this? At the point of diagnosis? When?

I certainly would never say that to anyone but I agree. The minute I feel I am becoming a burden to my family, that is my plan. Always has been.

The Online Safety Act would put paid to that (as it outlaws platforms that encourage self harm even if said self harm is better than the alternative) and I assume you can't go to Dignitas unless you are of sound mind, although a lot of people with early stage dementia would be of sound enough mind to end their lives I think. For example, a neighbour of my mum's forgets lots of things but I think she has enough mental faculties to make those sort of decisions.