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.

It was due to her own parent I think that's quite different to a more distant relation or family friend saying it to someone close to the family member.

My Dad used to say that if he let a dog exist in the state my Nan with dementia did for the last two years of her life he would be jailed.

Dad sadly developed dementia and ended up in care. There was a poor man in the next room and all you could hear was him calling out help me. Please God somebody help me. His poor wife was always there with him. Dad died but three years later another family member ended up there, sadly. When I went to visit that poor man was still calling for help and his poor wife still sat there holding his hand. Inhumane for both of them.

So what do we do with the people that can't afford to jet off to Dignitas?

The other thing to say, and I hesitate to say this, as I know it's not the majority experience or even maybe that common, and I fully, fully agree with the cruelty of dementia as a disease, but it is wrong in my mind to lump all dementia sufferers together and to say they all have a terrible quality of life. Some do of course, but in the early stages many people still are able to live fulfilling lives. And some people are lucky enough to maintain a reasonable quality of life throughout - my MIL had honestly the best dementia experience ever, she wasn't an easy or particularly contented person before the diagnosis, she'd had a hard life, but the more the disease progressed the happier she seemed to get, she was lucky of course in being able to be cared for at home initially with lots of loving local family, and eventually in a really good care home, but even when she'd completely lost her memory and nearly all cognitive ability she was never anxious or angry, she always had a smile for everyone, loved a laugh and seemed to basically be in a happy haze. Very, very hard for her children and family, particularly hard to adjust to such a drastic personality change in the opposite direction to how she was previously, but really hard to say her life was worthless when she seemed so happy. I know this is absolutely not everyone's experience but again just illustrates the difficulties in a one size fits all model...

My grandma died with multiple dementias, she weighed half her adult weight and was in nappies for the last few years of her life with no clue what was going on except for a profound sense of indignity.

My mum has made it very clear if she gets the same diagnosis she will buy the finest bottle of champagne and wash it all down with pills. I support that. In fact I think extreme cases of dementia should be on the assisted dying list. There, I said it.

I've had a stroke & am now on a cocktail of medication. Possibly the easiest way for me to end it all (not something I'm contemplating while my mum is alive) is to just stop taking the medication & enjoy my life (the medication makes me very unwell & so I'm unable to enjoy it at all, at the moment)

HOWEVER what terrifies me is having another stroke. An even worse one & surviving it.

im not strong enough (mentally/emotionally) to end my life myself. I don't think I could convince somewhere like dignitas to help me.

But while my Mum is still alive it's not something I need to spend my time thinking about.

and despite life being pretty shitty, I'm not ready to throw the towel just yet. Definitely not before the FWC final!😂

(If you don't laugh, you cry)

Which is illegal

Plus, the things I found hardest during the terrifying post concussion syndrome was the fact I had a total awareness of my limitations and decline in my brain's abilities. It was the contrast of the sharpness of the rude health compared to the awful struggle of the broken body. I can fully understand why people like that poor man the PP described as shouting for help would feel, and how distressing it must be.😢

An advance directive is needed because when dementia sets in there is - obviously - no capacity or indeed ability to get anywhere.

Mil was in total denial, aided and abetted by fil. In fact he was covering for her for ages such that the family were not aware of the true extent of it. When bil involved the GP the pil were furious.

A pp said they worked in a dementia home and work hard to give patients a nice experience. That’s as maybe, but imo sitting all day in a nappy, moaning, not knowing your dh, your dcs or even your own name is horrendous .

I haven't been through it but in general I'm in favour with assisted death. The way we treat elderly people who are suffering versus elderly animals who are suffering is very wrong IMO. I don't know the specifics of the legal situation but I am hoping to sign a document before I age, that allows me to be weaned off any medication other than pain relief once I hit a certain age, or when I am unable to live independently. Then I will die naturally. As far as I can tell there are 1000s of elderly people living a half life on tens of pills every day just to keep them functioning for no purpose. The pharma companies are only laughing at us. If you are at the stage that you are immobile, in nappies, spoon fed soft foods only, and drift in and out of sleep with moments of lucidity then it's your time to go. I don't know anyone ever who said they would like to linger like this. I've asked many, and everyone says it's their worst nightmare. Despite this we keep torturing them by finding more and more ways of extending the misery. I'm talking about ageing in general but I can make the same points about dementia.

This. It's easy to say these things but not so easy to do. I say this as someone who would rather be dead myself than suffer from dementia.

People glibly talking about ending their own lives. It's not that easy in reality.

And?

It was the same with me and my Mum. My Dad also tried to cover it up. However, I don't think an advance directive is legal in this country.

Do you want a friend or family member to go to prison for complying with your request?

Oof. Dealing with a parent with Alzheimer’s is nothing but stress, but I’d never have said that. 🙄

Strangely, the main affects are on the relatives. The person with it doesn’t understand what’s been lost.

Not ideal for her to say but I understand the emotion behind it after caring for someone with an illness similar to that.
My parents have said they would rather end their lives or die in a grand/fast fashion than have a long drawn out illness requiring me /my sibling to care for them

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.

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.

'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?

Even if they would rather have you alive than dead?

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

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.

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.

Ah Ooops all the typos sorry