What to do for the best

[heirloomcurls]

FIL is actively dying in hospital of terminal lung cancer diagnosed a month ago. My DH and BIL had him admitted to hospital three weeks ago, and the same day had MIL admitted to a care home. She hasadvanced dementia and until then had been cared for at home by FIL and home helpers.
MIL doesn't know about FIL. Dh and BIL don't think they should tell her, even when he dies. They don't think she should be taken to the funeral.
She can't communicate well verbally but still understands some things.
I haven't them for nearly 2 years because of covid and because we live 800km away.
I understand why DH and BIL are saying this but I'm struggling to accept it. I've suggested they ask the carehome what would be best or least worst for MIL.
Does anyone have any experience or advice? Thank you in advance.

DF caught pneumonia and got taken to hospital.
DM was looked after by me and DSis in our town but eventually sectioned after four weeks, as dementia galloped when DF not around.
DF got discharged from hospital after 11 weeks but had a catastrophic fall three days later back at home. He was brought back to the hospital where DM was sectioned then lay in a coma for four days.. (And by then DM had a broken arm as well.)
We decided to bring DM to see DF about twice a day for about 30 mins at a time or until she got restless. We encouraged her to hold his hand but she was distracted by picking off the cast on her broken arm . (She destroyed four casts so was used to being wheeled to A&E.) Transporting her was simple for us because it was just a ten minute wheel chair walk.
When in DF's room, we just let DM observe the tubes and DF in bed and the family around. She never spoke to DF but did watch him. We took her back to the MHU when she became unsettled.
When DF passed we didn't tell DM for the first few days as we were all exhausted. It was agreed the lead nurse in the MHU, DM's favourite, would tell DM himself over a cup of coffee that DF was dead. He sat her down and told her gently that DF had passed, and after a bit of a pause, DM simply said 'I know'. He was stunned as DM's response made sense and was entirely appropriate when almost every other time none of her other comments made sense.

We decided that was the only time we would tell her the news.
Every time she asked randomly where he was, we would say he was watching football.
We have no idea if DM did really know in that moment she and the nurse shared that conversation. However, it was helpful to us as we could then advise all care home staff - she eventually went into a care home when her guardianship came through seven months later - that if she ever asked of DF, he was watching football...
In your situation I have no idea if a wheel chair taxi is a relatively easy way of bringing them together? If your DH is not concerned, maybe you have to go with his wishes and intuition.

I don't think there's any right or wrong answer, I think you have to see how it goes. She will have to be told at some point but the timing must be right.

People with dementia can still feel profound grief over the death of a loved one who died 40 years ago, as though it had just happened. Their sense of time and the order of events gets very confused.

To be honest I would leave it to DH and his brother and the care home staff who know her best and can choose a moment of lucidity.

Thank you both for your support and advice. Sadly we learned not an hour after I posted that FIL passed away in the night.

Mum5net, I really appreciate you sharing your experience. I think I may be able to convince DH and BIL to handle it that way.
It makes me so sad that they were wrenched apart for his last weeks and that they weren't able to say goodbye. But yes, the priority has to be avoiding any distress for MIL in her condition. I do see that.
Best wishes to you and thanks again.

We had a similar situation with my grandmother, when her daughter, my mother died. Decided not to tell her as she was very restless and we didn’t want her to trip into a distressed trough. She was being cared for in her own home by my aunt and everyone was v careful not to say anything. One of the days she asked me to get Mary’s cards - I said what do you mean Mary’s playing cards? And she said No Mary’s funeral cards” So she knew.

I don’t know the right answer but I am sure professionals would advise.

Sorry for your loss.

Yes, so sorry for your loss. Take your time to decide what’s best.

Thank you.

FIL (dementia) just got distressed every time we re-told him that MIL had died, so we stopped telling him and said that she was at home/had gone shopping etc. Anything but telling him and upsetting him again.

my mum has dementia I would say tell her the once carefully when time is right then if she keeps asking where he is say he has gone shopping or something or every time you repeat he is dead she relieves it again as doesnt remember

Tell the care home. The senior staff in the care home will have dementia training and will deal with these kind of issues all the time.

I suspect it'd be best to visit to tell her face to face and she is likely to forget soon enough, but it's a kindness as he is her husband & it is right to tell her that her husband passed away.

She may sit and cry same as you would , and later she may talk about him as if he's still here. Treat like it's reminiscing "oh remember how dad likes... when we were young he used to..."

If she can't retain that he died, don't keep reminding her of her loss over and over (ie don't keep blurting out "but he's dead" ) after you've told her. As you won't want her to perpetually re experience the loss of her husband as if it's the first time she's told again but actually telling her that first time is genuinely important. She's his wife. Dementia doesn't stop her being his wife who has been widowed

Care staff will support you
Perhaps MIL might be able to join in funeral virtually on video from carehome even if for 10 mins with staff sat with her supporting her. Chances are she'll get distracted but you'll know you tried to help her participate and involved her even if for a brief part of the time

Source: I used to work in a hospice and work a lot with people with dementia and other health problems