Telling others when diagnosis is FTD

michiganpat

My husband has some type of FTD. It has been around 6 years, looking back, that his symptoms started. His primary doctor is aware and did the initial test 2 years ago after I sent her a message I was worried he had dementia. He was unaware I did it. He did pretty good on the memory test and was upset she did it, flatly refusing further testing. He now obsesses over everything. This summer he has been talking to one of the neighbors and freely giving his views on how they live, over and over, on many occasions. They talk in the front yard as they travel past our house. I am not there and only know because he tells me all about it. He tells them how they should never have built their pole barn, they should travel like their brother, he shouldn't smoke, they should etc, etc, you get the idea. It sounds like it's the same discussion whenever he sees them, over and over. He repeats the conversations to me after. They have to think he's a real jerk. Do I tell them he has dementia? His memory is intact. Will they believe me or think I am just making excuses for his behavior. Also, people talk and I don't want someone to tell him I have said he has dementia. Only family knows so far. He really doesn't get out much as he says "it's not safe out there". Any input would be appreciated. Thank you.

M1

Pat i would certainly tell them. Honestly they probably already suspect it. I found that to be the case when i had to tell people my partner had dementia. There comes a point when you need to tell other people, and i found that they invariably reacted with compassion. One suggestion ive seen here is even to have little cards printed up that you can hand to people saying something like: "my husband has dementia, thank you for understanding." I'm sorry you're at that point.

Mint

Oh my Pat, this sounds just like what my mom does. She tries to tell everyone she meets including all her neighbors what they should be doing and not doing. she becomes quite aggressive with anyone who doesn’t do as she says. It is so very hard to watch and listen to. thank you for sharing.

My mom is not diagnosed as she is very uncooperative with any type of medical care. Has had behavior changes for quite a few years now. It was a very long time, really only recently, that I have started feeling a little freer to talk about it. It seems like to me that no matter what my mother did people just kept acting like everything was normal. I often wondered what they said behind her back or what they said about me. Finally a neighbor approached me and said somethings wrong with your mom she’s really going downhill. I so appreciated her saying that to me. I approached another neighbor who helped my mom a lot and I said I guess you noticed that my mom is starting to cognitively decline. He looked at me like he had no idea what I was talking about and said, what do you mean. Then I became worried that he would tell my mom what I had said to him so it made me very very cautious about talking to anybody other than my siblings and I didn’t tell them everything. There were no issues with memory, but she was no longer able to keep her checking account and if she ordered things a lot of time, she didn’t send the right amount of money. Sometimes she sent too much money and sometimes she didn’t send enough. Finally, just a few months ago something that my mother did caused a sibling of hers to message me and say what is wrong with her. So that has opened the door for me to talk about more things. I still feel uneasy sometimes about saying things, I’m afraid maybe it’s wrong to talk about them but at the same time, it has been such a relief for me to know that, her siblings realize that things are not right. Of course, with time her behaviors and aggressiveness have only increased, but my siblings are helping me and this makes it easier since I’m not bearing everything alone. It has been a very hard decision for me.

Joe C.

I told all my neighbors when DW was in mid stage AD. It was very helpful when she start to wander, they would let me know she was out and they would try to redirect her. We had moved into this neighborhood when DW as in the early stages so we did not have any long term relationship with any of the neighbors but some of the them who she interacted with more frequently told me they we aware something was not right.

Jeanne C.

Pat, that must be so hard. Beyond our family, I've let close friends and the nearest neighbors know. We live in a small 55+ community so my guess is that they all know now, lol. Other than that, I only mention it if I feel it will help the interaction. Like our regular handyman knows so he understands to see me with questions rather than asking my husband. We're beyond it not being obvious that something is wrong, but generally I don't feel the need to explain.

Ed1937

I think you should tell them. Like M1 said, people will almost always be compassionate. If you are afraid someone will mention it to him, just ask them to please not say anything to him. Once they know, it should make you feel a little easier with the situation.

Lills

My DH had FTD (and ALS). I think he was in stage 5 when I began sharing with neighbors that he had FTD. It was the best thing I did. I felt such a relief. You'll be amazed at the kindness of friends and strangers.

Denise1847

I echo what others have said. People are very understanding and supportive when you tell them. Just take the opportunity to educate them that most often people with dementia/Alsheimer's are unable to grasp that they have the disease and believe their actions are normal. Thank them for their understanding. You've got this!

M5M

https://alzconnected.org/discussion/comment/186344#Comment_186344

If. You are in a 55+ community, isn’t it 1/in 6 may have some sort of dementia anyway…? In our group of 6 couples, one woman and 3 men are in various stages.

JiminTexas

Pat: One of the big benefits of this forum is that we see we are not experiencing things alone. My DW has always been a very strong, self reliant person. An artist who ran her own business for years. So she has always had strong opinions on how things should be. But lately it seems that she believes her way is the only way and gets rather agressive if i have a different opinion, takes it as a personal afront. So this appears to be a "feature" of the disease.

I hven't figured out how to get a professional diagnosis but her memory for new input has decreased to minutes, and cognigitive ability has declined. From reading here I believe she is in a MCI status. We did a test and MRI a couple of years ago but she was upset with the doctor when she indicated mild dementia and refused any more testing. More recently she asks "why don't I know that" when she finds she has asked something multiple times or forgotten something like a birthdday. I have casually mentioned we should maybe get that looked into but got no response.

Anyway good luck and thanks for the post. Was informative for me.

Joydean

The first time I felt the need to tell someone outside of family that persons response was “ don’t worry I noticed because my mil has Alzheimer’s too “. To me it has been amazing how many strangers (repair workers ect) recognized the signs that I had been so blind to. as others have recommended tell your neighbors. It’s the kindness thing you can do for your love one.

housefinch

This is a different situation but may have a little relevance. I have 2 children who both have autism & 1 has an intellectual disability. They both look like typical children without any physical features of a genetic condition or obvious disability etc. Our daughter is 9 and behaves like a preschooler, which can really be bizarre for some people. She doesn’t know a stranger and, while she is mostly adorable, she doesn’t have a “quiet” voice, says hi to everyone in public, asks embarrassing inappropriate questions to me about people nearby, etc. (Mommy, what’s that lady doing? About a man with long hair, etc) When a 2 year old does that, it’s cute. When a 9 year old does it, people think I’m a dreadful parent or she’s a horrible kid. I am very quick to explain her situation in public if I see ANYTHING barely becoming stressful. And our family modulates our activities carefully because of her behavior. We usually get takeout instead of eating in restaurants because she can’t tolerate waiting very easily, for instance, & it’s not worth the stress. I’ve found that people generally make much worse assumptions than reality if they don’t have an explanation. I hope this helps.