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.

This is one of those areas where thoughts don't need to be vocalised and especially in such a crass way.

My in-laws are so paranoid about Alzheimer's and being put into care, or whatever else, that they check themselves online for symptoms almost obsessively.

My parents are scared that, if they have falls, they will be put into care so will not discuss any medical issues with anyone for fear that people will have opinions and take matters into their own hands.

It's just not a healthy way to be and younger people making throw away statements is just callous and unnecessary, IMO.

I’m so sorry. It’s utterly shit, isn’t it? To see the bright amazing person going downhill is awful. Is your husband burying his head in the sand because he just can’t cope seeing his mum like that? Mine was similar and his db, who lived nearer mil, was resentful of the burden. Nothing helps. They say to label photos, but she had no idea who we were at the end.

it’s awful and I absolutely feel for you. 💐

Also another thing to add is I’ve heard they are quite close to finding a cure for dementia . It’s all very well saying head off to Switzerland and personally i think I would like to . But there is always a shred of hope and it would be a scary prospect if you were actually going through it . It’s not really the responsibility of the person who is diagnosed to “not be a burden “

Exactly. Fine to think it or perhaps say it to a partner. Not something to voice more widely, especially at a sensitive time.

Yeah I wanted to make an album for her, but it does all seem a bit pointless, she's lost in delusions. . She was there for me when the kids were small in a way my own mother wasn't. It's just all so depressing, he is indeed burying his head in the sand.

I have a chronic condition and have told my h and adult kids what I plan to do. They don't like it but they understand why I don't want to drag on into my 70's with it should it cause problems sooner rather than later, a diagnoses of an ongoing problem such as dementia will trigger my plans sooner if need be.
I don't want them to look after me and I'm not going to change my mind. They have their own lives to lead and I want them to be able to do that.

It's not unusual for sufferers of conditions like dementia with Lewy bodies to experience lucid periods where they are fully aware of what is happenig to them.

Would you want to be aware of your awful fate and not want to do anything about it?

I'm not sure but I believe the film director Tony Scott killed himself in similar circumstances

I have an advanced directive already in place to require all active treatment to stop if I am judged not to have capacity. Any infections will not be treated and all regular medications like my BP tablets stopped. If I am unable to eat/drink, no artificial feeding will be put in place.

It's registered with my GP and my children who have POA.

Having visited a dementia ward very regularly and seeing my MIL die with it I do not want to be that burden. This way it's my decision and my children are relieved of the responsibility of having to make it for me.

That was a simply appalling thing to say. Words fail me.

I think it's a reasonable thing to say in general. I've had those kind of discussions with family and friends. But not a very sensitive thing to say to her mother in the context of what happened to her father.

Robin Williams was diagnosed with Dementia with Lewy Bodies after his death. He is believed to have taken his own life.

You don’t have to be ‘demented’ to get a diagnosis. My mum was diagnosed with vascular dementia after experiencing worrying symptoms. Executive function didn’t start to be affected until over three years later, and she still had periods of capacity a couple of years after that. It was plenty of time to discuss what she wanted in terms of care and to put those plans into place.

This. I nursed my mum through vascular dementia at home. She progressed to the end stages over seven years and the last few months were an utter nightmare, despite outstanding support from GP and other NHS services. She died at the end of March and by the time the end came it was a relief, both for her and for me. I wouldn’t wish it on my worst enemy and it prompted me to put advance directives in place for both myself and DH.

Condolences on the loss of your friend and your father. 🌸

To be quite honest, I was totally on board with Terminally Ill Adults (End of Life) Bill. But reading some comments here, I not convinced people wouldn't try to coerce sick relatives to die when they're not ready to. Which is a disturbing realisation.

Agree. I saw my mum’s will to live get stronger as the dementia progressed. I don’t think it’s anyone’s place to suggest what happens to others in this situation, or to pass judgment on their decisions. It’s an utterly unconscionable thing to say to someone in these circumstances.

It's entirely possible!

Lots of people in early dementia can live life very normally, drive, partake in hobbies and plan things.

Is she like… really autistic or something? What the fuck?

To be honest, I’ve always thought if I did get it I would probably do that, but I can’t say. My mother used to constantly say if she got it to kill her before it got bad. I had to tell her to stop because it really upset me and also I never understood why I was the one to have to do it? Surly one of my brothers could snuff her out and not me?

Fair play that's a really good idea. I'm noting that one down for the future.

Photo albums were something that helped with my mum - she had vascular dementia. Try combining it with music. I knew what mum liked and what pieces of music had special significance - it seemed to trigger certain fragments of memory. It didn’t work all the time, but some days were better than others in terms of cognition.

Nope not ok to say.
And not just about Alzheimer’s either.

But that exactly what the supporters of Assisted Dying want to see. And very often underneath the ‘it was so hard to see them dying like that’ you have the feeling this woman expressed bluntly.

One reason why I’m against AD btw. Because where do you stop if the limit is ‘being a burden’?

Not good for the other passengers as I pointed out above.

Of course they will.

Not the least because once the idea that being a burden (something the AD bill saw as a good reason further AD) is good enough to put pressure in people, there will be a huge pressure on people. Socially and by individuals
Reinforced by a society that is becoming more and more individualistic

I was clearly naive. People can be so bloody cruel. It's been a real eye opener. 🙁

What do we do with people who dint want to die but are given no other choice?
Because when you don’t deliver the care people need (like palliative or hospice care) then that’s the only choice left.

Seriously look at what’s happening in Canada.
When you need painkillers but you can’t have them because <insert costs, need to see specialist in 2 years time etc…> but you can’t have have AD/MAID the next day (yep it’s that easy there) then that’s what people do.

And, as the proponents of AD bill said themselves, it’s cheaper right?

@Tableforjoan " wish there was a system where we could quite clearly willingly sign up to say if we got such diagnoses we could be put out of our misery as it’s no life."

I totally agree, that would be ideal BUT imagine the scene:

• person signs up to system saying "yes please do away with me should i get dementia"
• dementia happens, even years and years later, and because of the demetia the person is not who they were and is therefore screaming they want to live while they are carted off to be euthanised because their name was on that system.

We could not , understandably, stomach it.