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 think you’re incredibly naive. The progression of dementia isn’t necessarily quick and isn’t necessarily linear. At what point, having presumably cared for the other up to that point are you saying “right that’s it, time I buggered off and moved on with my life”?

So hold them down and kill them even if they resist cos they said they didn’t want to end up like that when they hadn’t yet developed dementia?!

How will you manage to plan that out with the dementia?

Same here. Mum was in her late eighties when she was diagnosed with vascular dementia. We managed to keep her at home with us with great input from carers, GP and district nurses, but the decline was steady over the years and the last twelve months were utterly horrendous.

She still retained some capacity up until the last couple of years and then the decline in cognition was rapid. The most awful thing about it was that she had fleeting periods of lucidity when she knew exactly what was happening and I don’t think l’ll ever forget how frightened she looked whenever the realisation of her situation dawned. She died in March this year at the age of 95 and l have to admit the grief was mixed with relief. Like you, I wouldn’t wish it on anyone. You lose the person bit by bit, and for me, by the time death took her there was nothing left of the mum I knew and loved.

Don’t know what country you’re in for assisted dying without capacity?

You’re so so naive and clearly don’t have much experience of dementia.

Most people who receive a diagnosis of dementia still have capacity. My mum received a diagnosis after some odd behaviour and forgetfulness alerted us that there was something amiss. The condition didn’t start to affect cognition until a few years later. We had plenty of time to put an advance directive in place.

I would like a system of advanced orders where you can specify at X point I want to be sent off with a drink like Switzerland or a lethal dose of morphine or whatever.

anyone who has watched a loved one die from dementia would understand that preference even if they don’t choose it for themself.

as it is, if I get a diagnosis I will have to choose between going to Switzerland and ending my life while I’m still well enough, at which point I’d have months if not years of quality of life ahead, or letting dementia take me.

But how would you do it? I'd want something quick and painless. Not sure it that's possible without going to Switzerland....plus it's illegal.
I really hope they legalise assisted dying before its my time.

😂

But your cut off is when you can no longer live independently? So how will you manage that planning then?

I have. It’s terrible. But she regularly refused medication, which is extremely common. How would we have packed her off to Switzerland and delivered a lethal dose?! “Now, I know you’re saying you don’t want us to, but 10 years ago you said you did and there’s no backsies so we’ll strap you to the plane then hold you down to deliver the dose”.

I’m very far from naive and come from a family riddled with it. I was the carer of someone who died from it.

I feel really worried that this is where society will end up eventually.

Besides which, 'no' is the default answer to everything for some people with dementia - my mum's like this on a bad day, doesn't matter what you ask her, the answer's no. How's anyone supposed to distinguish that blanket 'no' from 'no, please don't kill me'? It doesn't bear thinking about.

That's how I feel too - its complicated.

My father would have hated his dementia self- all his life he was a difficult man fiercely proud of his intellect. He would absolutely have wanted to be euthanised if he could have seen his future self. However his demented self was sweet and gentle and trusting. Im not sure I could have taken him and told him to hold his arm out for an injection that he no longer understood would have ended his life.

This.
While i know someone happyily living in there dementia state socially and physically involved in the daily care unit they live in.
Are they aware of where they are at while it progresses...it was funny how they talked about the residential home in the early days as "stuck in here", a person who never complained ever.
Now its a way of life.

I guess they are now unaware

I am friends with someone whose work is partly research into dementia, along with other brain ailments. They say a gene/blood/protein test (I’m not quite sure of the details, they are very clever, I’m not, so a lot of their work chat is just noise to me!) will eventually be available that will tell you your chances of getting dementia. Like pregnancy screening for Downs and similar.
I think it’d be awful to know that thats your future, but they think it’ll be a great help. But, if there’s a test that can tell you, you’ve 75% chance of getting sick in the next 5 yrs - well, those that don’t want to live with it, that’ll be their window to do something about it…I think I’d be in the do something about it camp.

Sounds to me as though the sister is somewhat traumatised having witnessed the poor demented man and his suffering (not to mention those around him) hence her bluntness 😒 It really is an evil disease

Experience of what, have you had dementia?
This is the thing from what I understand of dementia. The person with it is perfectly bloody happy floating around in their little bubble minding their own business. It’s everybody around them. It’s a problematic for.
It’s not like they’re in pain

This is not true. I wish it was.

My good friend and I have made a pact, as we don’t want to go to Switzerland, that we will help each other out if either of us are diagnosed with dementia.

What do you mean by that? It comes down to murder.

Easy to say during a chat with a friend, not so easy to carry it out.

I live in a country where it's legal. Still took my neighbour friend 4 years before it was honoured.

That is just not going to happen. See the ethical issues around Huntington's Disease. My family members would have absolutely used a 'death date' for expressing their wishes to die at a certain point of cognitive decline. They had advanced directives that were completely ignored. They then chose a violent horrifc end. They deserved a peaceful, planned death. I don't think the state will ever allow assisted death for neurological issues.

I think many of us would prefer to end our life rather than suffer the decline into Alzheimer’s or dementia. The problem is the moment is often overtaken by the progress of the disease. But absolutely no one should ever be made to feel guilty about having illness or disability of any kind.

How many of them said they didn’t want to end up like their mother, father, aunt, uncle, sibling etc and how many of them looked themselves when they ended up with dementia like those relatives?

Agreed. Hopefully someone will be along to give me the answer to this question shortly…