Should we tell our friends?

MaGary

My husband is in the early stages of ALZ and we have told our grown kids and our brothers and sisters about the diagnosis. And we also told two of our couple best friends.  Our kids don't want us to tell anyone else because they feel people will treat him differently.  But I want to tell our close neighbors and friends. I want the support. Since he is in early stages, he can still hold a good conversation and it is hard to notice.  My husband is on the fence about telling people.  He doesn't really feel the need.  In fact he is kind of in denial.   Also, I have a dental appointment coming up.  Should I tell our dentist of 30+ years?

PlentyQuiet

My DH is in the early stages too, symptoms not always noticed by people in casual conversation. 

We have told family, friends, and neighbors. They will be the ones to see the changes and it will help maintain his dignity if they understand the situation and can be sensitive to it. They treat him differently, but in a good way. They gloss over the little glitches in thought, fill in the missing words seamlessly, and don't give a startled look when DH replaces words. All of this allows DH to participate in social settings without making his EOAD the focus.

Our dentist knows as does any other health provider. They need to know that, if not now then soon, DH will not remember instructions or details. They will need to communicate with me or be open to having me there with him at appointments etc.,. I have filled out the needed forms to have access to his care so HIPPA is not an issue.

Also, and perhaps most importantly, I am building a support system for myself. The more people know the more they feel comfortable telling me if they notice something odd or dangerous. They will also ask how I'm doing. They don't help much (but at this point I don't need as much) but asking about me helps me feel seen in this world of caregiving. Maybe it will translate to tangible help later on, maybe not. But at least I don't feel so alone

MaGary

Thank you so much for that response!  I can't tell you how much better it makes me feel.  Just a small communication with someone going through the same thing helps so much!

-Mary Ann

Kenzie56

Just like PlentyQuiet, I told close friends and neighbors and had the same results. They are all very understanding and it allows my DH to feel comfortable trying to communicate around them.  With dementia, you never know when you will need help. My neighbors jumped in their cars at 6:00 am looking for DH last March when he decided to walk out the front door (while I was asleep) and "go for a walk".  One neighbor saw him and called me, then formed a search party in minutes. They found DH and all turned out just fine - but if I hadn't told them, it would have been a true crisis involving the police. I feel more secure, knowing I have their support. (Plus additional locks on the doors!)

Ed1937

I think PQ said it quite well. When people know, they tend to be much kinder. If he doesn't think there is anything wrong, there's a term for that. It is anosognosia. Here is a link to understand it. Why your loved one doesn't believe they have dementia- It's NOT denial. 

  

Buggsroo

I decided to tell the neighbours about a year ago, they informed me they already knew. I laughed and they proved their worth when he went walkabout and the neighbours hopped into their cars and went out to look for him. They have been a constant source of support and even amusement when one of them while walking her dog, was surprised by my husband in his birthday suit. Now if he gets away from me, they tell him to go inside and put on some clothes. You can’t have too many people in your corner to help you with this awful disease.

Rescue mom

Plenty Quiet and others have already said most everything for me.. My DH Alzheimer’s  often went unnoticed in a quick  greeting or encounter. Much beyond that, and most could tell something was not right. Better for people to know why, than to speculate—and they did—about other reasons. 

Everyone IME is helpful and supportive of Alzheimer’s. Otherwise they may think he’s just a jerk, or has a substance abuse problem.

Knowing also staved off others’ unrealistic requests for his help with things he could not do anymore, like driving them somewhere or helping with community activities. 

Neighbors’ “eyes,” and help and understanding were hugely important! 

I strongly strongly believe every health care provider needs to know. For one thing, they may expect your DH to help you, do something for you, that he cannot. And you will need to know more about what happens with your DH. 

NewCareGiver540

I am at this point exactly. First it was just our children and siblings - but now i am telling my cousins and close friends. It feels so much better to have them ask how DH is doing and also how I am doing. It was very hard to tell anyone - and it has been 8 months since he went on Arocept - and got an official diagnosis that his condition is not normal aging. I felt as if telling people was telling them a secret that was just between him and me. I did not want them to think less of him. But there have been enough situations where he acted differently and now I am glad that our close people know.

NewCareGiver540

This is just how i feel.

ImMaggieMae

We don’t have any children and only a sister each. My husband was aware that he was having problems with his memory, probably 5 or 6 years ago, and he told close friends and family. Everyone told him it was just normal aging.(late 60’s) It was about 4-1/2 years ago that I began to worry enough to go to our PCP with him who diagnosed MCI. He only missed a couple questions, Ct looked pretty much normal.  It wasn’t until mid Aug of 2021 that it seemed like someone flipped a switch and things started changing quickly. He knows now that things aren’t right and the few friends who have stood by us would have been aware even if they hadn’t been told. Once things get serious you find out who your real friends and any family members who actually care are. I don’t know that it made any difference that he told people years ago. Even I was in denial. 

I’m so sorry you have to be here but glad that you found us. You’ll get more info here than probably anywhere else, including most doctors.

Joe C.

I told my neighbors about DW’s diagnosis, I didn’t notice anyone treating us different. When the time came that DW started to wander the neighbors were great about redirecting and/or letting me know she was out of the house.

wspceo1

My DW used to live on the phone and now that she has ALZ she no longer wants to talk to anyone, even family. She would rather talk to her delusions and hallucinations.  So when I hold a conversation with a friend or neighbor I do share that she has a problem and that things are not going well.  I don't go ringing doorbells or chase people to tell them but when I think its appropriate I do share.

Pat6177

My DH has always been very private. When he was diagnosed, he said he didn’t want to tell anyone. He said that it was his business not anyone else’s. And he reiterated that preference about 6 mos ago. He’s entering into the moderate stage. At times he acknowledges that he has ALZ, other times not. He does allow me to go to all dr appts now, knowing that he needs help. (And he doesn’t drive anymore) I have told all drs, sometimes to DH’s anger but I feel they need to know. Most of my good friends know and certain neighbors know. We don’t have children. But I haven’t told any of his family. His sibs have all passed. We stay in touch with his sisters-in-law but they live on the east coast and we are in AZ. He has not maintained any relationship with his nieces or nephews. Yes, I will need to tell them at some point but I don’t see any benefit to anyone at this point. Regardless of what I do, I feel guilty. If I tell someone, I feel guilty cuz DH didn’t want me to tell anyone. And I feel guilty for not telling his family. So I muddle through, doing what I think is best.

T. Slothrop

Tell!  It makes a huge difference to share my burden, and I do so with friends and squash partners and professional colleagues. I find I am in large company.

David J

Bugsroo called it “went walkabout”. When that happened here, the entire neighborhood knew within a few minutes and an all-out search initiated. If the neighbors had not known, I would have been out searching all by myself.

saltom

Ditto to MaGary.  I have also found a friend whose husband is just about the same stage as mine and a neighbor who just lost her husband to ALZ.  I need all the support I can get and talking to  people who are going through or have been thorough understand what I am talking about.

John1965

https://www.alz.org/help-support/i-have-alz/know-what-to-expect/sharing-your-diagnosis

Paris20

I told immediate family right away but they already knew something was wrong. Not too long after, I told extended family, friends, and neighbors. I felt it was important for people to know why my husband seemed different. I also felt I was building a network of help, support, and watchful eyes. It’s not that I expected anyone to drop everything and come to help me. I did feel that it was better to tell the truth. AD is nothing to be ashamed of. Those days should be gone.