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.

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.

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.

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.

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.

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

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

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

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

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

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.

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

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

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.

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.

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.

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.

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

In the same way you cut off your left arm with your right and your right with your...ooops hang on a minute...

By the time its diagnosed its too late. MIL in a care home - can't feed herself, can't walk, shouts out in pain and anger - its no life and we've put a DNR/respect form in place - we may have to go for an advanced care plan as she has no existence. FIL also has dementia but is coping in assisted living. The sister has been through and lived it. I can't condemn her as its hell on earth.

I really hate this POV. And I think it’s really doubtful that all these people who say they would kill themselves would actually do it at the end of the day. Pushing people to feel they should take this course of action makes me feel sick.

This is the thing. So you’d have to make the decision to die, and do it, whilst you were still “well” to all intents and purposes. Which I think would be really hard to do as you’d always want that bit longer. Then once the signs of decline were obvious, it would be too late.

This is difficult for me to read, as are lots of articles regarding dementia, as a few years ago I found out that I have a copy of the Apoe4 gene, and whilst I know it’s not a definite I’ll go on to develop it, I have also had some quite significant health issues that have resulted in mass inflammation in my body, which certainly works against me and whilst I can try and protect myself as much as possible health wise now, most of the damage occurs years ago.

The irony is that I hit the bottle for 18 months after finding out, the fear would just overwhelm me and I wanted oblivion. I’ve stopped that now but I certainly have my escape plan when/if that diagnosis comes and have planned it down to the fine detail as there’s no way that I would want to carry on living with an Alzheimer’s diagnosis.

itd not something I’d say out loud to anyone but my partner and my sister, but I agree. Having seen my elderly grandparents decline it’s not something I want to happen to me and their decline was not extreme in comparison to others.
I don’t have children so no one to advocate for me and I don’t want to burden anyone who might feel obliged to step in.
admittedly if that time comes I might not be able to go through with it but I’d rather control my death that potentially be distressed, not looked after appropriately or become a risk to myself or others.

I am in the same situation. I loved her so much and she's just a husk now. Has no idea who I am. My husband seems to think he can just ignore her and isn't helping his father which is even more frustrating.

OP I´m not surprised she said that in the heat of the moment. My mum has Alzheimer´s, vascular dementia and a bening (ffff hate the term) brain tumor. She is slowly disappearing but has moments when she is almost herself, almost. She can still speak two languages. I have learned what marvelous fine tuned machine a brain is, and we take it for granted.
My aunt had very advanced alzheimers. Beautiful kind woman reduced to a baby in nappies who couldn´t lift her head and fed through a bottle. I did say to my other aunt that I hoped God took her as enough is enough, for her for her daughter and sons. She didn´t contradict me. But from that to making your parents feel guilty of being burdens and that they should commit suicide...I´m not ever going to go there. My mum looked after us, we look after her.