Alzheimers & Bereavement.

Savvy_Sue

Errata wrote: »

It may be the case that he'll forget he's been told his wife has died and will have to be told over and over again, each time experiencing heartbreak anew.
It does very much depend on his awareness of where he is and how his memory is affected.

It is very hard to get into the habit of NOT telling the truth, but maybe once people have seen the heartbreak a few times it will get easier.

FIL is still asking how my parents are - or sometimes just my mum - and I don't always get my brain in gear fast enough to give a plausible lie. He got really upset once that he'd forgotten, most of the time he's fine about it, but then it's my parents, who he rarely saw, and we don't see that much of him.

But I can't see any point upsetting him, and if it gets to the stage where he's regularly upset then I'm sure I WILL lie. "Is your mum getting out much these days?" "No, not for the last few months, but she's got a trip planned for July".

Babbawah wrote: »

This is what we have been told by those treating him.

Then I'd be guided by them.

Errata

My mum thought I worked in the office in her care home and told staff I was a very nice lady for sparing time to talk to her. No point in telling her I was her daughter, she wouldn't have believed me.

Scottie_dog

My gran thought the care home she lived in was some sort of mansion, built especially for her and that she decorated it herself. If someone leaned against the wall in the lounge area she used to shout "oi, get off my wallpaper!". She also used to tell the staff "that lassie over there is such a bonnie bairn but who let her in here?" (She was talking about me). Ironically I look just like my grandmother and was named after her. She died when I was in my late teens and I still can't get my head around the fact that she couldn't recognise me anymore towards the end of her life.
It really is a shocking disease.

nearlyrich

My only experience of this is with my brother's MIL who has dementia, I saw her and her husband out and she asked how my mum was maybe 6 years after she died and the lady had been at the funeral. I felt so sorry for her husband as he was clearly very upset that I might be upset. It is a dreadful disease for both the person with it and the family.

onlyroz

My father in law died with my mother in law lying in bed next to him. She didn't notice and the police had to break into the house once her carer raised concerns that nobody was answering the door. For the rest of the day she had to keep being reminded that her husband had died. We took the decision that she shouldn't go to the funeral because she would be confused over what was happening.

As for your own situation it really depends on how far advanced the dementia is. If there are moments of lucidity then you could tell him but it might also be kinder to not.

pendragon_arther

This is a very sad and heartbreaking case. However I must be in a minority here because eventhough your uncle has the disease he is still an adult albeit with an altered consciousness. Who is protecting who here? Is it the son protecting himself because he assumes his father will endure pain and anguish countless times and he doesn't want to go through this, or is he protecting the father for the same reason?
Alzheimers is not a cut and dried disease and it can affect people differently. Personally I would tell him so to some extent he can go through the grieving process which is painful but is part of lifes rich tapestry. We all have to endure it at some point in our lives. However, if it is the case that he forgets then by all means stick to plan 'A' and pretend everything is hunkeydorey. But at least he will have hopefully cried and released some of the loss, because at the moment he is experiencing a sense of loss by not seeing her and being apart from her but this process is not being concluded in any way.

pickledonionspaceraider

It's a very difficult and tragic situation OP.

I have to say after mulling this over, I agree with what Pendragon is saying - that he should be told.

If it is kept a secret, unless everyone can agree, it is highly likely someone is going to blab anyway

jackyann

OP - I think that the best thing is to talk it over with the people who are caring for your uncle.
I know that the care home staff are only just getting to know him, but there must have been some sort of care team previously.

You also need to bear in mind what your uncle / aunt would have wanted and how they liked to do things.

Some people with dementia will "make sense" of the situation they are in, and your uncle may be having strange & distressing thoughts about the absence of his wife.

The care home staff will be used to dealing with this, will be assessing him as a person, and will be able to give good advice.

I would tell your cousin to say to others that they are undecided about when & how to best talk to uncle, are taking professional advice (that usually shuts up some of the family) and to keep an open mind.

Best wishes.

Mr_Toad

Babbawah wrote: »

Here's a good one for the MSE massif.

My no' 1 bestest favourite surviving uncle was diagnosed with Alzheimers over 2yrs ago and 8 days ago his wife for 48yrs died of a massive heart attack.

His only son forbids anyone to tell him & I agree with him.

However, it is ripping the family apart. There is a growing contingent within the family who insist that my uncle *MUST* be told & if his only son doesn't then they are going to take matters into their own hands & tell him themselve's.

Together with my cousin + a few others we are in a minority, but feel that he is right.

Please feel free to either agree or disagree, your input might help to make sense of this nonsense.

My father had Alzheimers/dementia and died 2 years ago, my mother has it and is in a home.

As an only child I helped mum when she looked after Dad and after he died and she got worse I cared for my Mum at home as long as I could.

I attended carers courses run by the Alzheimers Soc and not telling him is the right thing.

Few people really understand the illness, they think that constantly telling or reminding someone something helps and that they will remember.

They don't.

They haven't forgotten a memory it has been removed, deleted by the illness that has destroyed that part of the brain and is gone forever and you can't remember something you effectively never knew.

Alzeimers destroys the newer memories first, this is why the can remember what happened decades ago but not five minutes ago or yesterday.

Every time you tell him his wife has died will be like the first time and he will feel the pain a grief then forget. Why would anyone want to put him through that every time they see him? It's just a form of torture and abuse.

I was advised by the Alzheimers Soc to tell them anything rather than upset them.

Tell him she's coming to see him later, he will accept this and have forgotten asking let alone the answer in a very short time.

When I visit Mum if I go to the toilet by the time I get back she's forgotten I was there and it's like I've just arrived and she's delighted to see me.

Those people who don't agree are viewing Alzheimers/dementia from a normal persons point of view and have no idea.

When I took mum back to the care home after dad's funeral she'd already forgotten he was gone and where she'd been. She told the care home staff she'd had a lovely day out!!

soolin

Just a personal note here, no advice at all really. My beloved father had very severe dementia for the last 5 years of his life, it came on suddenly and he reverted to a very childlike state.

All he wanted was his mother, asked about her all the time - but she had diesdwhen he was 4, burnt to death in front of him.

The mental hospital he spent the first few months in insisted on telling him over and over that she was dead, so he grieved every time they told him. Then we moved him to a wonderful dementia home, and although guidelines said they were not to lie to him, they did- his mum was always 'just pegging out the washing' or 'at the corner shop buying milk', and he was happy with that. So 20 times a day he imagined her pegging out the washing, instead of 20 times a day being reminded she was dead

dad's dementia was very bad though, didn't know who I was and for the last couple of years would often ask if I was his mum , doctors always told me I should say no, but I just went along with him and we would sit there holding hands and it was lovely to see dad at peace.