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.