Who to tell, what to tell them?

JDancer

We are beginning to socialize, post COVID, seeing many people who have not seen my DH since his rapid decline. I don't know what to tell people,. Family are aware, but few others. If I mention dementia, people always assume (or ask about) Alzheimer's. It's exhausting to explain Alzheimer's vs dementia. My husband says he has "memory problems" and I wonder if that's the best thing to say, but that seems to minimize the problem. The people I have told during the last year have all told me they noticed some problems

Rescue mom

When it reached a point that was noticeable—which was actually before his diagnosis—I just did tell people my DH had Alzheimer’s. Most people don’t want a detailed explanation, certainly nothing about that vs. other dementias, just saying Alzheimer’s was enough.

“Memory problems” may in fact be enough, depending on what they may ask or expect from him. For example, my DH did a lot of helping others, until Alzheimer’s.  But he’d still agree to do things, even when he could not do them. They needed to know it was more than just memory problems.

I rather them know his actions were due to Alzheimer’s than speculate about other less pleasant reasons, which was happening. His behavior and presentation was obviously off, no shame in having Alzheimer’s or any other disease.

If they asked more—which almost never happened outside family—I’d try to answer questions or explain a little, but they never asked much. The exception was when someone would say their parent or brother etc. had similar problems, and would want more info, and that was fine. But just saying Alzheimer’s was enough for 98 percent.

I didn’t say any of that in front of DH. It would be an aside or more private convo.

JJ401

DH says he has memory problems and that’s what I go with. I’ve found most people equate memory issues with Alzheimer’s. 

I don’t discuss this in front of DH. DH and I go to the same optometrist and the same dermatologist. I’ve discussed his memory issues and the implications for his care with them at my appointments. Both pulled up his electronic chart and added notes. 

Treading_water

I dont bother explaining the difference between FTD and Alzheimer’s. When I say early onset dementia everyone assumes Alzheimer’s and for friends, neighbors etc  just don’t go into it like I did for family. I figure they don’t need the details. They have the larger picture. 

I have sent private messages to friends before seeing them after a while so they could be prepared. It seems to help a lot. We recently had dinner with one of his oldest friends from high school and it went well. He was patient while my husband was finding his words and willing to talk about old times. I think the evening went a lot smoother than if he had been surprised. 

Donr

I just tell people that my wife has dementia. No other explanation unless they ask.

mainstreetmarshall

Only part of our kids know but thats about to change. DWs behavior is getting weird enough that they need to be alerted. NONE live near us so seldom see us. Was out to dinner a few nights ago, walked in to a restaurant, hostess asked " how many tonight?" and my wife blurted out "4! Cant you count?" rudely....and there was only 2 of us. The waitress shot her an evil look and got us seated.  I was embarrassed. Im thinking of having small cards printed up " please excuse my wife, she has memory issues and may make rude unexpected comments. I apologize in advance".