Terrible Family

I'm so sorry your in-laws are treating you so badly. My husband was just diagnosed, but I feel like I've been going through hell for over a decade watching his personality change. According to the neurologist, he has Pick's FTD. From all of my research, it is nearly a perfect match as to what I have observed and experienced all these years. Anyway, something that has been on mind these last few days is how little people understand what a nuclear family goes through in the years leading up to a diagnosis. I imagine most couples divorce and many nuclear families fall apart and for those who manage to stay together, the nuclear family has already gone through incredible psychological trauma and financial ruin. When I say "nuclear family" I am referring to the ones in the home who have witnessed a change that most others do not, including extended family. It's horrific. I mention this because I imagine this is what you've experienced too and they have no clue. It's so unfair and it's so messed up. It's like a psychological thriller. I am convinced some of these dementias happen long before the more noticeable symptoms begin to surface. It's devastating.

Hi husband12, I'm so sorry for what her disease has brought to light. All of us experience the falling away of family and friends, but yours has been particularly dramatic. As hard as it is, let them go and mourn your losses in private. You know you are not poisoning your wife. It's so painful to lose support—this is a lonely, lonely path.

One suggestion I might make from my own past: you can always write letters to these family members to help process your feelings and express exactly what you want to say—but you don't have to send them. Just getting it down on paper helps sometimes.

and @husband12 , I agree that nobody that doesn't witness it day in and day out thinks the diagnosis is just not possible. When I finally got the FTD diagnosis for my DH, I called his best friend to discuss it with him, as we were getting ready to get together socially. He told me that he'd prefer to not discuss DH with me, that his conversations would be with his friend as it had always been. I was so hurt that he would think that I wasn't able to speak for DH in these situations. As time went on and DH progressed, the bestie understood that the diagnosis was real, and I was not exaggerating his symptoms. He has now been the best possible friend to both DH and me.

Moral of the story is that especially since FTD causes such personality changes, that the family, friends, etc that aren't living it every day can overlook the things we have to deal with. And yes, MelissaNH many couples do get a divorce because of FTD because the symptoms are so subtle and so disturbing to the afflicted person's normal personality. I spent 3 years considering divorce. I remember asking my husband to go to therapy with me and he looked at me and said he'd rather just divorce me!! I was shocked and hurt. Now it all makes sense.

It is truly amazing what happens to families. Mine is not exception.

Please know in your heart that you did all that you did because of who you are.

Also please know that this is a large virtual family and you are an official member!

-Judith

husband12, I’m sorry for the family that you married into. You don’t say anything about your wife’s feelings toward her family. Is she still asking to see them? Or are you able to stay away from her family without her noticing? I just want to mention the use of fiblets if she does ask to see them. Comments like “oh your brother is traveling. We’ll get together with them when they return” Yes, it puts even more pressure on you. Caregiving can be so difficult.