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.

Remember she's been through it and you haven't. Its been gruelling. This is probably the grief talking, don't take it personally.

It’s still absolutely no reason to say something like that to someone. And OP says the sister wasn’t involved in his care. It’s a personal decision and statements such as the sister has made here is just one more reason why a law on assisted dying should never be passed. There is simply too much room for abuse.

You’ve hit the nail on the head, and one of the arguments against assisted dying. People change their minds.

Why not? If the test becomes available, it might not be something the NHS gets involved with, but I think I’d probably pay for it privately if the option was there.

You have to be of sound mind to change your will. Why should a decision made when you’re rational be any different?

My mum was aware of the signs and had gone to the doctor but as with anything, did not know for definite, was scared and was hoping it would be something else. Then it was too late.

So the next time you forget where you put your keys you'd better go through with your plan immediately, no point risking it! Also, do you really think your family will say to you, "Blossom, you clearly have dementia, time to off yourself/stop taking the blood pressure meds." Because it's not an easy thing to say.

If I was to answer this for myself, the answer would be that if I later changed my mind after the point where I was deemed to have lost capacity, I don't think anyone can say that that decision wouldn't be right for me at the time simply because I was perceived to have lost capacity. There has to be a concept of capacity being lost for many legal/administrative purposes, I do realise, but I don't personally think a change of heart over AD should be disregarded simply because a person is no longer legally deemed capable of consent. Partly because periods of lucidity are part of many people's dementia experience, as has been acknowledged on here. Partly because mistakes can and do happen, and partly because what's at stake is simply too massive, far bigger than changing one's will, for example. The thought of legitimately changing my mind and having to submit to being forcibly killed despite pleading to be spared, for me personally, is too terrible to contemplate.

That's not me trying to say what other people should or shouldn't be allowed to do, note. And I do realise that a 'change of mind' clause in the case of dementia would effectively render the whole thing meaningless which is why I wouldn't personally go this route in the first place. I do recognise/respect that that's different to what others have chosen, though. I really wish there were easier answers to this whole dilemma.

IMO anyone who’s had to live with dementia, especially in the later stages, would probably sympathise - not that I’d ever had said such a thing to my demented DM!

However, my DM, whose sister developed dementia a few years before she did, often used to say that if she ever got like that, she’d take an overdose.

By the time she actually did have diagnosed dementia (still fairly early stage) though, she refused to accept that there was anything wrong with her, and just got angry if we tried to remind her - so we soon stopped.

As for the ‘overdose’, she’d completely forgotten that she’d ever said such a thing, and if she’d ever hidden a stash of tablets away, she’d have completely forgotten a) that she did such a thing, and b) where she’d hidden them!

So force the lethal injection on you then?!

So yet another two tier system.

From experience of looking after my mum throughout dementia, capacity is considered fluid. An advance directive/ LPA requires that the attorney act in the best interests of the donor at all times, and that wherever possible they are included in decisions being made on their behalf. So a decision to forge ahead with a lethal injection or whatever the method, when they are clearly saying no is unworkable.

Absolutely. It’s what I want now while my brain’s fully functional. It wouldn’t be an injection anyway, I believe it’s two drinks which I would have to pick up myself.

Although I agree that's not ideal, on one level it could end up acting as a built in safeguard for some of the most vulnerable...

Or leaving the most vulnerable without the means to end their suffering.

Yes, unfortunately it is a double-edged sword. But I do think the poorest are also going to end up being among the most likely (alongside the richest) to find themselves being coerced, sadly.

Tbf I agree that helps matters somewhat.

It’s not true of all of dementia sufferers all of the time. It is true of some dementia sufferers some of the time.

People may go through a bad phase and mellow into a more contented one (or vice versa). Or have good days and bad days. Or only become agitated in the evenings (sundowning). It depends on the individual and the type of dementia.

Dementia takes many forms and even if we get a diagnosis in time to do much about it, we still don't know exactly how it will affect us, or our loved ones.
My relationship with my late DM wasn’t great, she could be difficult (full disclosure, me too) and we struggled a bit, but did our best.
After the dementia took hold she changed such a lot, became the sweetest (but dottiest) old lady you could imagine. It was still frustrating to deal with at times because she still forgot anything and everything.
She'd say to me ‘We’ve been such good friends for a long time now, haven’t we?’ And I didn’t know whether to laugh or cry.

I think the relevant point here is that the end stages of dementia, regardless of the cause, are universally awful. My mum was relatively fine during the first few years after her diagnosis. The loss of mental capacity in the last couple of years was rapid, and accompanied by other symptoms, including periods of lucidity in which she recognised her predicament and was truly terrified. I watched my mum cry like a newborn for what she had lost and what she perceived she was putting myself and the rest of our family through - my only comfort is that these periods were mercifully brief.

By the end she was slave to her OCD like symptoms, and experiencing excruciating muscle spasms the like of which I have never seen. What I witnessed in the last two years of her life I wouldn’t wish on my worst enemy.

That said, I remain totally opposed to any kind of assisted dying bill, simply because after a lot of years on this planet, I’ve come to the conclusion that human beings are not to be trusted. That’s not a criticism. It’s simply a nod to the human condition.

Agree.

There’s a world of difference between expressing a desire to change your will and expressing the desire not to die.

The principle is exactly the same. Both are decisions which should only be taken when of sound mind with any change ignored when mental capacity changes.

Sorry. But I have had very first hand experience of nursing my mum through vascular dementia at home and she was far from floating around in ‘her little bubble’. She was diagnosed well before she lost capacity and knew what was going to happen. That realisation fundamentally changed her.

The mid to end stages last a couple of years and get progressively worse. She had periods of crystal clear lucidity in which I witnessed a fear in her eyes that will stay with me for the rest of my life - not least because no amount of reassurance could take it away.

And she was in pain. The last year resulted in excruciating headaches associated with bleeds to the brain. She had muscle spasms that would force her into the foetal position with knees drawn up to her chest and hands clenched so tight that nail marks in her palms would bleed. Please don’t comment on things you clearly know very little about. Some of us have lived it.

I think we have to agree to disagree. You really would force euthanasia on someone protesting that they don’t want it, just because they had once opted for it at a different time of their lives, when they couldn’t possibly have predicted how they would feel if it actually happened ?

I wouldn’t force anyone else to do anything. My views apply personally only to me. I’m not forcing them on anyone else. Unlike opponents of assisted dying.