When to tell family of diagnosis

Mrs Hordern

Just wondering when is the best time to tell family/friends the diagnosis of mild to moderate dementia?

Rescue mom

I think this is an extremely individual matter, that involves wish/need for privacy, how far the disease has progressed, and many other issues that vary enormously from person to person.

But I can tell you what I did about my DH, who was fairly well-known and very active in business and the community. His behavior and conversation were noticeably “off,”—not really  crazy or totally inappropriate, just definitely not right—by the time he was diagnosed. I told family immediately after Dx, and friends very soon, but gradually as timing or events allowed.

I learned later there was ugly rumors about reasons for his off behavior and remarks.  I’d rather they knew it was Alzheimer’s than speculate about other things. People were unfailingly nice and supportive when told Alzheimer’s. 

He was judged at “early moderate” stage by the time  he was diagnosed. He could still do a few simple things, but nothing involved and certainly no involved conversation..

Jewelsrr

I m trying now and they seem to deny it. I think it’s accelerating quickly and they will be sorry they didn’t listen (stepdaughters). We have a memory care specialist coming up and then we will really need to talk about the plan. He has told a few of his friends who again minimized but finally he has made some serious social media problems so I got him to open up to a friend. He hasn’t even been clear with his two different therapists and he hasn’t told any siblings.

Rescue mom

Jewels…most family and a few friends absolutely were in denial, or shrugged it off as “everybody forgets some things” etc. Or “he must not feel well,” or he’s just joking/playing with you. The memory clinic/neurologist Dx, and brain scans, pretty much took care of that.

Some people, to this day, will still say “oh he looks so good, he can’t really be sick”…after a maybe 5 minutes of conversation where they did all the talking and he just smiled and nodded. Thankfully, he still does smile at people, and is generally docile. They don’t know he looks good because somebody made him bathe, dressed him, got his hair cut, helped him brush his teeth, etc. That reaction  still hurts, but I had to get over that.

Crushed

Told DD right away about MCI.  Went through a long and painful process of using up her federal sick and annual leave without telling them why.  Filed for SSID while she was on sick leave. She finally retired  when the leave was finished.  Told family in stages and colleagues later.  All neighbors knew since she was  a wanderer.  Finally told her world wide professional community about the time she sent into MC

Josie in Podunk

By the time we got the official diagnosis of mild to moderate, it had been obvious to close family and friends for a couple of years. In fact, it was my son who was the catalyst for going to the doctor for help in the first place.

My spouse’s son in New Jersey was the first of his kids to be aware as we saw him more often than the others.  He was estranged from his oldest daughter in NC and was in denial even after being told.  His youngest lives in Ireland and was upset she hadn’t noticed on her recent visit to the states.  His son and youngest daughter have been as supportive as they can be at the distances they live from us.  The oldest, I think still has a certain amount of denial in her head.

We told others as they came into our sphere of movement.  Many we have not seen nor spoken to in years still do not know…I don’t feel particularly obligated to tell them.

I tend to agree with others that it personal choice as to how and when differing people need to be added to your circle.

Ed1937

Mrs. H. welcome to the forum. Sorry you have a reason to be here. But it's a good place to be for information and support.

I'm assuming that it is your husband who was diagnosed. Is that right? If so, how does he feel about other people knowing about it? People will know that something is not right, in time. We have a large family, and I called all of our kids together, and I told them everything I knew about it, including that it is fatal. This was very soon after the diagnosis, which my wife never heard, but I did. Nobody was asked to keep it a secret from others, but I did ask them not to mention it to my wife. It's been 4 years, and she still doesn't know. But word quickly got around town, and many people know about it. But as others have said, it's a personal choice you have to make.

JoseyWales

It's personal. No one way is right.

For us, DH was trying to figure out what was wrong for years. After we finally had a "probable" diagnosis of dementia from one of the best Alzheimer's doctors in the state, he had me stop at his parents' house on the way home to tell them.

He told everyone he knew and people we just met. Until about a year later when he started to forget what he had and then decided that he'd become secretive.  

Jewelsrr

Rescue mom, I can appreciate that. The lack of bathing is one that really shocked me. There was one week I took laundry down on the weekend and there was only one pair of his underwear and a couple pairs of socks for an entire week. Now I try to keep track And he definitely does not shower until I remind him most weeks. I am randomly checking his toothbrush and I don’t think he brushes many days either. I haven’t been after that one yet. Was thinking I would wait until our vacation coming up when I can verify.

Pam BH

I agree that each situation is different just as each PWD is different. Our situation was somewhat similar to Ed's.  DH and I both have the same doctor, who has been better than the best neurologist in our case, so it was me as his longtime caregiver for a stroke who received the probable diagnosis that he had AZ and VaD. I told all our family and friends. However, I went to great lengths not to tell DH since his biggest fear for decades has been that he would have AZ like his mother, and I and the rest of the family knew it would devastate him. Little did we realize that all the pains we went through to not mention it wouldn't have mattered since he has anosognosia, which mean he didn't have the ability to recognize he had AZ/VaD.  So friends and family all know, but he doesn't and never questions what's wrong with him.

Rescue mom

Reading some of these is ironic? (the right word?) for me. DH before Dx freely talked about his memory problems, and was totally unbothered by them. 

The docs told him and me that he almost certainly, as sure as they can be, had Alzheimer’s and his reaction was “at least it’s not brain cancer.” No questions, no apparent interest. He pored over the written reports for a while, but never said anything about them. Now I’d bet he never understood them.

I’m pretty sure now in hindsight he did not know what Alzheimer’s meant. He still talks about his memory problems,  and still seems completely unbothered by it (unless I bug him about bathing or tooth brushing, etc., things he insists he already did). 

Others will laugh or agree about his memory issues, but nobody really uses the word Alzheimer’s with him. No point in that.

Bob in LW

I think that deciding who to tell about a loved one's condition varies with the circumstances.  My SO has severe short term memory loss, so anyone who interacts with her needs to know about it so that they will understand why she asks them the same questions over and over.  They also need to realize why I sometimes have to correct her when she is telling them something that is completely wrong.