Telling family members about my husbands Alz.

I have had the same dilema
Ultimately, I began with our grown kids, then one of his siblings, our pastor a people who were mutual friends that I felt would not gossip. I receive great support from them but my husband pushes back denying he has a disease that is progressive and resents boundaries I make. It's been rough.

If the person with dementia is dead set against people knowing, I would say you should respect that. But at the same time, maybe point out to the person that people will notice if he acts or speaks oddly and they may jump to a different conclusion than dementia. Otherwise, though, I think we should look at dementia as another health issue (which it is) and nothing to be ashamed of or hide. I wonder if we would not tell people if we or a loved one had brain cancer, even though it will change behavior and abilities just as the various causes of dementia do.

Mind you, I'm referring to an actual diagnosis of dementia, not just a person getting forgetful, etc., and us jumping to that conclusion.

I had the same dilemma as well. My husband was diagnosed with MCI last year. I started small… family, close friends, etc. I was lucky in the fact that he started telling people on his own, so I felt easier sharing. I’m really glad I have told our circle now as different personality symptoms are starting to appear. He’s much louder, talks a lot and quite often says whatever comes into his brain. I can tell they understand and most people are supportive and wonderful. In saying that, every day is different and it’s hard sometimes to remember it’s the disease talking and I shouldn’t take things personally. Big hugs. 💕

All this posts are helpful. Thank you.

I have to admit I was a little taken-aback, when my cousin announced that she had MCI. I was just silent, but felt I should say something, but didn't know what. How would you respond?

I will tell you something that I found surprising and disappointing when attempting to keep our adult
children informed so that they could plan and act with full knowledge, since their mother is unwilling and unable to admit or share details of her Alzheimer's, diagnosed 8 years ago.
At first, all four of them were appreciative of being informed of the medical conditions, Dr visits, dental and eye doctor visits, in addition to emergency room visits. The some of them started getting angry and questioning me (more like interrogating) about what happened, what I did to prevent it, why I didn't do things differently in emergency situations, etc. I concluded they really would rather not have a play by play, and eased off on my attempts at "good" family communication. I rarely give them details now, except to the one who has POA, after me.
I guess the point is, be prepared for some surprises if you do communicate to family. They might not respond the way you expect.

The fact that she told you she had MCI indicates she's willing to talk openly about it. If you can (and I know it's hard for some people), be open with her. Ask her about her plans for the future, how she's feeling about it, etc. I know talking about things like that is hard, but it's even harder for the person who has the diagnosis but is in the early stages and people act as if it's something to be ashamed of or kept from everyone else. Too often it seems like people react to someone announcing a diagnosis of dementia as if they've just announced they caught a venereal disease.

I guess what I'm saying is remember it's not about you. It's about her. If you can, be there for her as she navigates the early stages. And I understand some people just can't do that, but if not, at least try to verify if she has others who are able to give her the support she needs. And remember, it could be any of us one day. I recently read that dementia strikes at least 20% of people over the age of sixty, so one out of five. We need to treat this as we would any other health condition, with openness and compassion.

I guess I wouldn't have guessed that this cousin had MCI. As we get older we all frequently search for a right word, or forget a name or repeat an old story. I do it myself. My other cousin is in a facility, as she can no longer live alone, and had obvious signs of dementia.

It is a rollacoaster dispensing the diagnosis of dementia. Some relatives suddenly ghost you, I think from their fear and inability to accept the changes. Some relatives and friends jump right in with support and company. No one is indifferent and as a spouse watching it all unfold is a challenge to say the least and painful on so many levels.

My husband was diagnosed w MCI in 2023. It is progressing to moderate even enough to be called dementia. He chose to be open about his diagnosis. He is very social with lots of friends and we have close family. This allows us to discuss it, cry about it, hug each other even though it is so damn irritating sometime and I lose it. No one has ghosted us. We are still very social and friends and family are very supportive to a point. I am his biggest support 24/7 and it’s hard for me.
I spoke with a friend whose husband died of dementia and Parkinson’s. They never talked about it and the it was too late. She said she regrets not being able to talk to him about his disease.
I have a friend whose husband doesn’t want her telling people. They have shared with family and some friends, but it is apparent and can’t be kept a secret for long.
Denial will only delay good discussions and long term planning.