Whom do you tell She has dementia?

Posted by elliottw @elliottw, Feb 8 9:51am

Last week my wife and I were sitting with a social group of people from our neighborhood and my wife was sitting next to a very nice woman and her husband. Different topics would come up and I could hear my wife telling stories that were not quite right. Her latest stories are about meeting famous people. She says she has met Trump and the My Pillow Guy. The nice woman at one point disclosed she had recovered from leukemia and buried two husbands. I 'almost' responded that my mother also had buried two husbands and that my wife has high functioning Alzheimer. But I didn't.

So who do you tell? I've told my family and her family the doctor's diagnosis and treatment. But I don't know what level of 'need to know' is appropriate with others. And do you say it when your spouse is with you? Does anyone have a spouse who says, "And I have early onset dementia" when someone asks them, "How are you?"

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@elliottw Wow - this can be touchy, and it very much depends on the person, and whether they have acknowledged/accepted the diagnosis. And not everyone needs to know...

These are some of my experiences - one long-time friend and winter neighbor, since deceased, was very open about his situation, and he and his wife freely shared his many conditions, including mild memory loss, with others. Another winter neighbor, a much more private person, disclosed her MCI to me and asked me to tell only a few others who "wouldn't spread it around."
When my Mom resided in an assisted living community, some of her neighbors and friends were open about it, others were in denial, and still others only wanted the word to be spread to those who needed to know.
At home, our next door neighbor told us about her husband for his safety - we had done the same years earlier with my father-in-law - they were prone to confusion and getting lost right on our 2-block-long cul de sac. On the other hand my son-in-law's family tried to be quite secretive about it - until Mom walked away from home in a sweatshirt in January - which led to a very scary day of waiting and searching.
So, you can see it can be beneficial if some people know for her safety as the disease progresses.

Can you discuss this with your wife? Would she be okay with sharing this as part of her introduction to others in situations where she will see these people over time? If not, is she okay if you tell people?

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I am in the same situation with my hubby. He is still very capable in the things he does but communicating his thoughts is where things get complicated. In order for folks to understand why he talks a little strange when trying to carry on a conversation in places where he is well known, like our church or in our close social circles, I have discreetly (because I would never want him to be embarrassed by just putting it out there) shared his situation so that those he is conversing with will understand why what he is trying to say doesn’t always make a lot of sense. He knows exactly what it is he wants to say, it just doesn’t come out that way. I have also made sure that all of the doctors offices we visit, besides the neurologist and our family doctor, have it noted on his file. I have found that everyone is very kind and very patient with him when they understand what is going on.

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Thank you for your insight. It is a unique social situation similar to walking a tight rope. The two most widely known situations are Ronald Regan and now Jay Leno's wife. I'm thinking it is better to disclose one-on-one when the spouse isn't present.

Locally, there was a dentist who's wife was a well known, popular nurse. I was at there house one day and I brought up a situation where she and a doctor had used a salt packet from a McDonald's order to clean out a wound. And her husband quickly changed the subject and I thought it was odd. It was ten years later, when she had passed, that her Alzheimer was disclosed in the obituary.

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Hi @elliottw, in the early stages of his diagnosis my husband talked about his dementia to others. He's since forgotten. When he tells me he doesn't understand why he can't remember things, I tell him he has CRAD- Can't Remember Anything Disorder, which makes him laugh. The few times I told him he has Alzheimer's, he said that he didn't, so I don't bother telling him anymore.
I always used Need to Know Basis to tell people about his condition, and as it's progressed, I've told more people. Last week some guys were working on our neighbor's house. When my husband was out of earshot, I told them that he had dementia and that he would be saying hi to them all day, waving, and telling them that they were doing a great job. They were pretty gracious about it.
Last year, I didn't realize my husband was blind in one eye (a cataract). He was watching people, walking on the street below us, with binoculars from our patio. One woman's upset husband confronted us and I disclosed my husband's condition to him. My husband's since had surgery on both his eyes, and I've hidden the binoculars.
I recently attended "The Empowered Caregiver" through the Alzheimer's Association and the moderator gave us cards that say "My companion has dementia." I have a couple in my wallet incase I need them. The odd time we go out to eat, my husband is impatient and yells out to wait staff across the restaurant.
With respect to the woman your wife told her tall tales to, you could consider disclosing your wife's condition if there could be a negative consequence to their interaction, for example, the neighbors start gossiping about what a liar she is, etc. And if something goes awry, it might be helpful to have neighbor's aware of her condition. I find most people are understanding and want to be helpful.

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