Dad (abroad) with dementia & blindness, what can I advise mum to say to him when he asks...

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Tesslynne

I have posted on here regarding my own needs and physical issues & you've all been so amazing, thank you! But this time I need to post about my dad's issues and what I can suggest to mum to do. I THINK this is the right category but please let me know if I need to move it.
So, my parents don't live in the UK but I can't visit at the moment & not for a while & yes my health condition is a HUGE part of why, although I may be able to visit in a year/two. But I want to get some advice to help mum know what to do. And I will also get her to ask over there.
My dad has dementia & to add to that, from another condition, he is legally blind. I am mentioning this because I know that visual prompts etc. would normally help but they won't in this case.
About a week ago, mum said he kept asking about his brother who has passed. Has he gone for the motorbike ride (he must have done this as a kid, and no that is not how he passed) and is he coming back soon? And asking over and over again.
I do feel for mum & I've done what I can in terms of finding charities over there in the country where they live to try to help, I contacted them ages ago & gave mum the numbers & links & later on she DID get SOME help. I also have a sibling over there but they don't seem to have helped & have their own issues. Mum also does have other family members, some her age, some younger. But as you can imagine, my guilt is immense at times but I can't go over there right now so I am trying to help in the small ways I can, by getting some strategies for her and trying to put her in touch with people who can advise her.
BUT, there MAY also be people here who know how to deal with this. What can she say to him? He can hear, I don't know if her making a voice recording will help, he went blind later in life so he can't read braille. Please any suggestions to help? Thanks in advance.

Rosie_Scope

Hi @Tesslynne, sorry to hear about your situation, it must be really difficult to be separated from your parents, but it's lovely that you're still doing so much to help them.

I've had some relatives with Alzheimer's or Dementia and the repetitive questioning can be a difficult one, especially if it's about someone who's passed away. I hope you don't mind me sharing my experience but we had a similar circumstance in my extended family. My partner's grandmother had been living with Alzheimer's for a couple of years when her daughter (my partner's aunt) passed away. As her condition deteriorated, she would often ask questions about her daughter repetitively; what she was doing, where she was, if she was coming to visit soon. She was initially told about her death and came to the funeral, but forgot about it later and was devastated by it each time she was told.

In the end, my partner's family chose to speak about her daughter as if she was still alive to reduce her stress. The family would talk about how she was on holiday somewhere as she often was in life. Any time she asked, we'd try to deflect into sharing memories with her and chat about the good times, or sometimes confirm that she'd rung last week and would ring again soon. In some ways it was nice for the family to think of the daughter as living it up somewhere warm, and it meant that the grandmother wasn't been repeatedly stressed out each time. It's such a personal thing to tackle so I can understand that doing it that way might not be right for others in other situations.

You may have already come across this, but I found these pages on the Alzheimer's UK website about how to help with repetitive behaviours:

Repetitive behaviour and dementia | Alzheimer's Society

Could you perhaps look into audio gadgets that might help your dad? You can often get things like talking clocks or other equipment that talks, and I think you can also get buttons where you record a message and the person can touch it to hear it. That might be one way of helping him if he needs some prompts during the day but can't see visual cues.

It sounds like you're doing all you can to help them and I'm sure they appreciate it even though you're not able to be there in person at the moment. Hope you're doing okay in the circumstances 💙