Dementia and bereavement

[applesarerroundandshiny]

Does anybody have any experience of one parent dying and the remaining parent having dementia?

My father has recently passed away and my mum has quite advanced dementia. She knows who I am, and she can remember some song lyrics but very little else, both short term and long term. She also struggles to express herself. Yet, there are some things she seems to have an understanding of which doesn't fit in with how she responds to life in general.

Both parents have been living in a care home. After my dad passed, myself and a couple of the carers sat my mum down and told her and we took her in to see him and say good bye.

Since then she hasn't asked about him but staff tell me that she doesn't go down to his room anymore whereas previously she she would wander round to his room and sit by him for a bit (not every day but some days) so it seems like she remembers that he's gone.

We have funeral service planned next week and my initial thoughts were not to involve mum as it would be overwhelming for her, I wasn't sure she would understand what was happening, and sometimes you just can't get her to sit.

And yet I'm wondering if she's thinking about him, if I should talk to her about him, and if I should ask if she wants to come to the service. When I've visited she seems her normal self (quite content) and she hasn't mentioned him, but it's like she's been trying to ask me something but can't remember what it is.

Staff at the home seem to be going with how mum is so picking up on her cues and wouldn't bring the subject up if mum didn't mention. They've also said that they haven't experienced this situation before.

Does anybody have any advice for me?

We took mum, plus a carer (just in case,) to my dad’s funeral, hoping to to help it register in her subconsciousness. She was fine at the time, but became agitated and depressed several weeks/months later. Dementia is so so awful for families.

The reason for our decision? Imagine how you would feel if you hadn’t been ‘’allowed’ to go to your partner’s funeral?

Dementia awareness often comes and goes in waves.

At least we could say we’d tried.

I would take her to the funeral - but perhaps take a carer from the home in case she becomes too distressed, so she can leave if need be.

We didn't have this exact situation when we were dealing with dementia, but we did find this method very useful in similar situations www.contenteddementiatrust.org/specal-method/three-golden-rules/

Avocados - That link you gave is amazing & so true.

Thank you for that link- that looks a useful resource . I am aware that the 'contented dementia' approach is to go along with the person with dementia and to not contradict - and also about them having happy or negative feelings and not knowing why - and this seems in my mind to contradict with the idea of taking her to the funeral.

This is why I'm conflicted.

We told her about dad's death and took her down to see him and say goodbye as I thought she should have this opportunity, and I know she retained it for a short while as she asked me about 15 mins later how he had died. But giving another example, when we told her of his death the care manager started by saying 'you know how apple's dad hasn't been well lately....' and mum's response was that she didn't know as she hadn't seen him for ages, whereas she'd spent several hours the previous day sitting by him.

I didn't want her to be in a situation where she would be more unsettled and frightened if she didn't need to be, but, yet I agree she does have a right to go.

I was thinking of having a chat to her next time I went and saying I'm arranging a service to say good bye to dad and see what her response is. From what the carers have said about her not going down to his room I think on an instinctive level she's retained that he's gone, but if she's forgotten I don't want to be the cause of making her unhappy.

My DF had a catastrophic accident. He died three days later in the same hospital where my DM had been sectioned (her dementia had become violent with him not around as he'd just had a long stay in hospital himself.) My DM didn't attend his funeral but we organised a party for my DF in her unit. We had afternoon tea with home made meringues (DF's favourite) and a happy canvas photo of my parents on display. Dad's carers and neighbours attended. My DM had a really good time considering the circumstances and we figured DF would have preferred his life to be celebrated with mum.
Had my mum not been sectioned (nor had a broken wrist) I think we would have attempted to take her with a nurse/ carer and been aware that she could leave at any part.

My instincts would be that she goes to the funeral unless she says she doesn't want to - but have someone there (dedicated carer, not someone who would be upset to miss the funeral) who can take her home if she becomes too distressed.

Part of me also wonders how far ahead the decision to take or not take her has to be taken - so long as she's washed and clean, smart clothes are on hand I would suggest that you can change your mind up until the morning of the funeral.

Then as things progress over the coming months and years, if she's repeatedly asking where he is, develop a stock phrase to explain his benign, temporary absence such as "he's gone to the paper shop to buy a newspaper" or "he's gone to walk the dog" (something which would be plausible years ago - pick something else if he was an illiterate dog hater ) so that she doesn't have to relive the distress of learning DH has died for the first time every day.

Forgot to mention that it may be appropriate for her to go to one part of the funeral but not another - not dementia, but at her DH's funeral, DGM managed all of the funeral apart from the graveside burial bit as she was too upset; your DM may manage the ceremony or wake but not both, for instance.

I've been in this same situation, and I'd agree with Fortysix about having a small party for her and some family members / old friends . I wish I'd thought to do that for my Mum when Dad died.