Should I Tell His Family?

JH2024

My DH (61) was recently diagnosed with MCI most likely due to ALZ. There’s family history and his IQ has plummeted. He had the full neuropsych work up and that was the conclusion. He’s somewhat in denial, but is coming to terms. He doesn’t want me to tell anyone. I’m seeing declines monthly. I have no clue how fast this will progress. He comes from a large family and feel like his siblings should be told and have the opportunity to interact with him before it’s too late. When I bring it up, he doesn’t want me to tell them. He’s embarrassed. One of his older brothers was recently diagnosed with Parkinson’s. I feel like they should be talking and supporting each other. I also feel like this is information that his siblings should have. Their mom died from ALZ at age 70.
Should I tell his family? We’ve been married for 35 years if that matters. Thanks

Denise1847

I would tell the family,but make it clear that he doesn't want them to know so that they can act appropriately with him. That is, in a supportive and understanding way. You will find as this disease progresses that you will need to do alot of things that your DH doesn't want you to. You aren't betraying him, you are helping him and his family spend quality time together.

Jgirl57

I agree; his family needs to know. When I was telling family members, I stressed to them that he did not want them to know. All were supportive of the news.

M1

Welcome to the forum and yes, i would tell them. Educate yourself and his family about anosognosia; this is a feature of the disease that prevents him from perceiving his deficits. It's quite different from denial. You and the family will need to learn not to discuss his dementia with him. he will likely react with anger and frustration. We never used the word dementia or Alzheimer's.

sandwichone123

My spouse's parents had designated him as their executor, so I thought I should let them know. After dinner with his brother and sister-in-law I told them of dh's diagnosis, and his brother said, "oh, I thought he'd just had too many beers."

mathreader

We decided right from the start to tell everyone in the family and close friends. It's up to you of course, but it has made life so much easier for me for everyone to know.

fmb

DH knew he was having "memory problems" and did not want me to tell anyone. I honored that request, but it came at great cost to me, as we became more and more isolated while I was his sole caregiver for over seven years prior to AL placement seven months ago. In retrospect, I wish I would have confided in select relatives and friends who would have been supportive and helpful. It would also have helped us seek testing to arrive at a diagnosis sooner. He wasn't diagnosed with ALZ until last Fall, by which time he was in Stage 6.

trottingalong

I felt I was betraying my husband by telling his siblings, but I came to the conclusion they should know. All his siblings call him just to talk. We all live far apart and he enjoys the conversations. Nothing is ever said about dementia and we don’t talk about it in our home.

harshedbuzz

@JH2024

If this is recent news, I feel like he should have time to sit with it for a while. Perhaps he'll change is mind. Unless there is a compelling reason for someone to know— if he's business partners with one, executor of a will or named as guardian for minor children— this can wait a bit.

If he's close to all or some of his sibs, they've likely gotten a sense that something might be going on and don't need to be looped in. And if he's not close, I think it's probably unrealistic to share in hopes you can get them to reconnect if they aren't already involved in each other's lives.

Families are funny things; there may be some history of rivalry or competitiveness driving your DH's decision. I would not opt to share a diagnosis of dementia with my DH's brother (who likes to present himself as an intellectual which is laughable) nor with my mom's remaining sister who would likely gloat and get all up in my business.

HB

Quilting brings calm

Are they the type that would be helpful? Are they close emotionally and in physical location? Will they second guess your decisions or cause issues?

I’d wait a while. Maybe until you need help with taking him places or someone being at your house so you can run errands. If they are close, they can figure it out for themselves in the meantime.

Lgb35

my DH did not want anyone to know. I did tell his mom because as a mom myself I would want to know. I have told only a couple siblings that we are close with and let them know he doesn’t want people knowing. We are 3 years in from the first neurologist appt and he has begun to tell people on his own as he feels comfortable.