New here - Want to know about when to tell others of the dementia

[Shiawase]

Hello everyone,
I'm new here and have joined as my husband has been diagnosed with dementia. We haven't narrowed down what type yet, but I've been noticing signs and making notes of them for the past 2 1/2 years.
My husband still seems to be in denial - talks about how he has memory issues "it's just part of getting old" etc. He only acknowledges that he has issues coming up with words and has a hard time spelling sometimes. Of course I notice MUCH more and so did the doctors when he was tested.
I want to tell all our famly and close friends about the diagnosis, but he does not see any need / pupose in that. I have told a few people behind his back, but feel so guilty that I'm doing it against his wishes.
He has told me he wants to be treated kindly and with understanding (from me) - maybe he's afraid he'll be looked at diffently by them if they know? Maybe it's an ego thing? Maybe it's just the dementia and he can't comprehind what's really happening?
Ughhhh so hard to know what to say to him on this.

 

[FrustratedFrog]

Welcome!!
It’s a tricky one because he may feel so confused and conflicted about what’s going on with him and also indenial as we all are when we don’t feel ourselves but at the same time you need people to speak to openly about it without fear of affecting his wishes and you may also be telling people so that he has extra support down the line should he and you need it.
I would consider how many people know about it and who is being told. I would keep the circle very small and be weary of who they may also tell e.g are they are blabbers or close family like a sister whilst he has capacity or consider how he would feel if he was aware people knew without his authorisation or think how you may feel if you were him for now. I think you are right that his main reason is he’s worried he will be treated differently.
I would say if he seems to hold capacity for now focus on speaking to him about the importance of getting things in place to support you both like POA, an updated Will, clearing any debts, submitting POA to all his personal things like banks and how he wants his care to be as he develops. This way as his condition develops you have peace of mind it is all sorted so you can focus on just you and him. Maybe also ask him who he would like to disclose it too as it develops possibly a list of relatives or friends or maybe discuss a marker for when that would be for example if he begins to forget names then that may be the time to disclose it, that way it takes pressure off you at events because everyone will be aware of the reasons. Try and maybe also explain to him the reasons you need tell to tell people for example you might need support within the family. Don’t try and reason with him if he’s against it because he will always be right in his mind regardless of how far he is within his diagnosis which I’m learning myself. Don’t feel bad for telling people because remember you aren’t doing it maliciously, but I’d consider maybe the need to tell ALL the family and close friends just yet.

 

[My Mum's Daughter]

I think that this may go back to many years ago where dementia was treated so differently. When we saw the old lady in the street in her underwear and as kids, we laughed and did nothing to help.

Thankfully things have now changed for the better and dementia is treated far more sympathetically. People will now help, even if it is in a very small way but to do that, they have to be informed of your husband's condition.

So when did I make people aware? Close family and friends were told when I had my first suspicions. Most were shocked but one or two had also seen changes. We began to compare notes and a full picture started to emerge. Friends still welcomed her to their OAP meetings and kept a close eye on her on outings. The exchanged information really helped with diagnosis.

The day the the memory clinic confirmed what we already knew, all those close family and friends received a phone call. During the next few days, the wider family were informed and as Mum lived alone, I knocked neighbour's doors. I was met with nothing but sympathy and understanding. I didn't expect then to become unpaid carers but if there was a problem, a quick phone call would be appreciated.

I became a master of the "knowing look" which gave supermarket staff the heads up that we had a problem. I told the optician, the hairdresser and anyone else that Mum had contact with.

The result was, when Mum had a household emergency, a knowing neighbour helped until I got there. When Mum left things in the garden, another neighbour called and I went around and sorted it out. Mum finally did the very thing that she dreaded and went wandering down the street in her nightwear. Neighbour 3 took her in, called me and made her a cup of tea. This was it, the point of no return had been reached and residential care came a few days later.

I've never regretted my decision to open about Mum's condition, it's an illness like any other that we'd openly discuss.

 

[Alisongs]

Lots of ideas, advice and experience for you to take on board. We'll be here 247 for you. I'm currently reading an excellent, objective book, Dementia Essentials, by Jan Hall, that may help you. I got it through my county Library. Old and New editions available to purchase on the Internet too. See the Alzheimers Society book review

https://www.alzheimers.org.uk/get-support/publications-and-factsheets/dementia-together/aug-sept-2021/book-group-dementia-essentials-jan-hall