Informing others of diagnosis

Barbie300

I was wondering if I should mention to acquaintances that my DH is showing signs of Alzheimer’s. Sometimes we meet up with friends we haven’t seen in a long time and my DH has gotten to the point where he has very little to say or when he does say something it shows his memory is not normal. I don’t know whether to mention that my DH has Alzheimer’s or let people draw their own conclusions. What do others do?

Jez975

I carry these cards to show someone discreetly

charley0419

I thought about that a lot at first and decided once we were with friends and my wife said something and someone said “ what are you talking about what do you have Dementia or something “. My wife had no idea what she meant , from then on I mention she has Dementia. People say stupid things

RetiredTeacher

I tell friends DH has had several strokes and has VD. They notice how quiet he is and how much more frail he has become. It's obvious now and I dont hide it. I say it on the sly, not in front of my husband.

SDianeL

I would tell them but not in front of my LO.

Biggles

Same as RetiredTeacher and because it can be obvious that things are not quite as they should be and we often seem to have contractors call (carpentry, plumbers, electricians) and they always want to talk to the man of the house ##@@&!! I say my husband is compromised so just deal with me. I have found this the kindest quickest way to cope with this and if I say it quickly enough my DH doesn’t notice. I choose carefully who I say this to particularly when we are out walking our puppy or at the shops and usually I don’t say anything. On a phone call this morning to my wonderful older brother and sister-in-law I told them a few rudimentary differences between Alzheimer’s and Vascular dementia, they had no idea and were so kind with their responses.

Chris20cm

https://alzconnected.org/discussion/72594/informing-others-of-diagnosis

I think it depends on the closeness of those friendships. I rarely explain to most friends and acquaintances, but you can tell by their puzzled looks they know something is wrong. There are small cards you can discreetly hand to certain individuals, but I have done this, and DW is in late stage six.

trottingalong

It took me awhile to actually say the words “my husband has dementia” because I felt guilty. I still do to a lesser degree, but all our friends do know. I just tell them my husband doesn’t realize he has it. I finally told some neighbors and a couple different ones said they were wondering if something was going on. There’s no shame in letting people know. Not everyone can figure it out themselves.

Barbie300

https://alzconnected.org/discussion/comment/238957#Comment_238957

I like this card

JJ401

My experience is different. DH was the one who insisted (to his primary) that he needed to see a neurologist after his sister was diagnosed. He even tested fine the first few times he went. The neurologist only had him come back because DH insisted something was wrong. Then suddenly he didn't test as well and it's been downhill since. While all this was going on DH was open with close friends and family.

DH plays in a card league at a local social club. He never said anything to them. He still plays well so playing isn't the issue. But, he started to ask repetitive questions about other things. The league coordinator approached me with concern. I confirmed his 'memory issues'. They said he can play as long as he is able and have been great with him. A few have approached me and said they have family with dementia and understand how important it is for him to play as long as he can. He's still playing well this season and last season came in in the top five in the league. Long term memory for the win.

I meet once a month or so with a group of friends I have known from high school. Long time friends who have been through the trials of life together. We freely talk about issues and help each other through them. They have been a great source of support for me. I highly recommend finding a couple of friends to talk to.

Dio

I do let people know that DH has LBD but not the gory details of his behaviors as a result of the disease…these are private, very private, and no need to be shared with anyone except perhaps close family. I chose not to share with his distant relatives because it would have become a gossip hot topic.

brs

https://alzconnected.org/discussion/comment/238957#Comment_238957

Great idea with the cards, may I ask where you got them from ? Thank you

Sitemsek

I would rather people know than for them to think my wife can't even complete a full sentence. Similar to Jez975 I have these cards. I also gave some to my wife's two sisters who regularly take her out.

Barbie300

https://alzconnected.org/discussion/comment/238957#Comment_238957

Thank you so much. That is very helpful.

l7pla1w2

https://alzconnected.org/discussion/72594/informing-others-of-diagnosis

I think years ago, people felt there was some kind of stigma if a family member had dementia and tried to hide it. I think people are more open now, and there's more general awareness of the prevalence of dementia.

I let people know on an as-needed basis, discreetly, not in DW's presence, because she didn't think she had a problem. (Anosognosia) People are almost always understanding and sympathetic. I don't think it's necessary to be more specific than "dementia". Sometimes others will have noticed something was off but were afraid to say anything to me, and they're relieved when I tell them what they suspected. People who have had some kind of personal connection to someone with dementia often pick up on the signs before we do.

HollyBerry

I realize this is an old thread but it's still a new topic to some. We've been traveling on this road for 7? years now. At first I would wait until it came up and then called it "memory issues." When she got lost and the police had to bring her home, I just came out and said it was MCI and she was being followed by Geriatrics. The tricky part was when some people knew and others didn't, like at her volunteer place; the people she worked with closely knew something was up, the volunteer manager knew, but the other volunteers didn't and that led to some awkwardness. Most recently, I had the opportunity to introduce us to a larger group where some people knew us well and others didn't, and I simply threw in "she used to do X before retiring from the sport. Alzheimers sucks!" Let's just name it! I also wanted to be sure the people who didn't know us well but might have had an odd conversation now understood why.

My cousin chose to send an email to the cousins and family to whom he felt close, explaining what was going on. I assume he did something similar with old friends. One of his daily routines is to post a pic or short comment to FB, so I hear more from him now than I ever have. I can understand why he wanted to take this route and I sort of wish we'd done that for my partner.

upstateAnn

from the beginning my husband was adamant that we tell people he had Alzheimer’s. He said that having a terminal brain disease is nothing to feel shame about. He is a good man.

Dmarcotte

https://alzconnected.org/discussion/comment/238968#Comment_238968

I have been screening my DH calls for years (well before there was any sign of dementia) I always ask who is calling and why they want to speak to him - many of them just hang up. If they have a sales pitch I tell them we are not interested and hang up.

JulietteBee

My darling mom has told no one. A lot of the times she gets mad at mean when I remind her of something she forgot or point us times she has asked the same question 7 times in 10 minutes, each time swearing she had not previously asked.

To preserve her dignity & maintain her privacy, I have only told 2 of her siblings & 1 of her friends because I think they can help me to help her.

For my mental health & as a sanity preserving effort, I have told 4 of my ride or die friends. They will call to check on ME, while mom's people check on her.

Play it by air, keeping in mind what his desire would have been. My mom has always been very private, so though she can not now tell me if I should tell others, I've opted to maintain privacy as she would have wanted it.

blacksparky

My DW was diagnosed with EOAD almost 3 years ago. We started telling friends and family soon thereafter. Now I have been writing a journal of our daily lives together. Each month I will email my journal notes to our family and friends to let them know where we are at in our journey. This helps them when they visit to know where she is on the progression. Another reason I have started this journal is to be able to go back and see where my DW is in her progression. When you are with your LO 24/7, sometimes you don’t notice the progression.

Iris L.

Juliette, your mom gets angry when you point out that she is repeating because she has anosognosia. She is unaware that she is repeating or that she is forgetting and yes, she will become upset when you confront her with reality. You will learn not to confront her with reality. You will have to learn new ways of communication with her. You will have to be mindful of your sanity and well-being.

Iris