When to tell family and friends

Jeannie44

My DH was diagnosed with Alzheimer's 2 years ago. He is ashamed of this disease and didn't want to tell his family; including his daughters. I did tell his daughters he was experiencing symptoms and the results of his tests. They have been very supportive.

He has responded to ALZ medications, but his short-term memory has worsened. He's afraid to tell his friends and family about his diagnosis and believes they will think and act differently toward him.

When did your LO let family and friends know about their diagnosis? How did they respond?

frankay

I was in the same boat with my DH. He made me promise not to tell anyone including our children. I almost immediately told our financial guy because I was terrified about money to take care of him. I did finally tell our children after several weeks. I told his brother several months later bacause he needed to take over the finances of a family property. That time of not being able to share this information was pure torture for me and I was going through some horrible times with him over driving and handling finances and I was by myself in making decisions. It was probably almost a year before I started to tell people who needed to be told because I couldn't stand to pretend that everything was okay with him when we were around other people; plus we needed to see an attorney to get our financial things in order. Your DH is right; friends and family will think and act differently toward him and to you. Some will be supportive but be prepared for many to drop off. I think you need to be the one to decide when to tell what people because you are the one who needs support and help. It's all on you now, so do what you need to do. He is not able to do rational thinking.

harshedbuzz

@Jeannie44

This is a tough one. On one hand, when a husband or wife has dementia, the couple has dementia. In many ways, this is as much your story as his.

I am so glad you shared with the daughters. One third of caregivers predecease their PWD. You wouldn't want the girls to inherit the responsibility of his well-being without being prepared. This happened in our family when my uncle died before his wife did. He'd covered for her, and they lived 3 hours north of the nearest sister. It was only after the sister visited and found my aunt sitting in a cold dark house about to go into foreclosure for taxes.

You said: "He's afraid to tell his friends and family about his diagnosis and believes they will think and act differently toward him."

They will. They absolutely will because of the changes dementia will bring to his personality and ability to function as a friend. This will happen whether he shares his diagnosis or not.

My parents actively avoided dad being diagnosed for almost a decade despite my badgering them/mom. Initially dad was wary of me taking away his independence and then he developed anosognosia and couldn't recognize the ways in which he was impaired. Mom was in denial. During this time, dad lost his empathy and social filter which made him a tiresome man with whom to spend time. He was ghosted by his long-time golf group, so mom arranged for them to retire to a different state. It took him 3 years to become persona non grata there, so they bought a place in FL where it took about 5 winters before he'd been dropped by all but the neighborhood happy hour crew.

Even if you share, many folks will slowly move on. Friendship requires a give and take that a PWD isn't able to participate in. You may find family members back away as well. This is an almost universal experience for those of us here.

HB

Jeannie44

Thank you for your thoughts.

rockymtngrrl

I told some close girlfriends and my niece, whom I trust, first. I needed to have a support group and someone to care for him if something happened to me. Then he decided to tell his buddies. All kinds of reactions. Most people don't see any difference. Some of his friends are in denial; and some have had family with dementia so they are here to help. Some family members think I'm 'overreacting ' and 'I act like he's dying.' My niece reminded them that, sadly, he is dying, very slowly.

Artworker

My DW was diagnosed with Alzheimers about a month ago - we're both processing and although I've been expecting this for a while she's flipping between accepting and denying or forgetting. The diagnosis triggered a couple really good discussions on good days but she doesn't remember them and I still allow myself to think that she's understanding this when really she's not. She doesn't want to tell family and close friends yet and makes me promise I won't - I struggle with betraying her trust but I am slowly letting close family and friends know. When she asked yesterday if I had told our adult children I said yes and she was fine with it because she forgot about my promise to wait - I'm learning that these fibs are going to be a big part of managing her emotions and anxiety. She's lost so much already and I'm just starting to realize how hard this is going to be. I miss the way we used to talk and figure things out together.

caregiving daughter

I would suggest it's not an all or nothing—rather, it's on a need to know basis. Yes, on fiduciary and children. Yes, to cousin who consistently stops by to visit. No, to cousin that seems more focused on themselves.

Victoriaredux

Friends can become ghosts , and it may be because of dementia experiences in their life . Called the man who was the PWD's best man at his wedding and encouraged him to call or drop by— silence , then he said " no I can't." His Mom had died of the disease and couldn't face it again , or is a total boor.

Reminds me of this old song —warning it's an ear worm melody —a lot of people become someone we used to know…. "feels so rough"

https://www.youtube.com/watch?v=Ig3_Ufhdzmg

Maru

https://alzconnected.org/discussion/71622/when-to-tell-family-and-friends

Your DH's wishes are one thing but there are other factors to consider, as others have pointed out. But, you are the one who will carry this burden and you need people who can listen to you, to help you with being his caretaker. We told our children, who all stepped up in support and in sharing the burden as best as they can. I told our financial guy as I wanted to make sure DH would not call him and make some random change in investments. You don't need to tell all your friends and acquaintances. They won't notice for a long time. Sorry that you find yourself here, but welcome.

Arrowhead

I told our family and friends immediately and they immediately began giving both of us a lot of support.