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Dear Emma, Rumer, Scout, Tallulah, Mabel, Evelyn, and Demi,
First and foremost, I want to tell you that I’m sorry. When I read that your husband and father, Bruce Willis was diagnosed with frontotemporal dementia, my heart broke. I know yours already had. It’s devasting to receive a diagnosis like this.
I know because I’ve been there. After showing symptoms of dementia, my mother was diagnosed with CJD Creutzfeldt-Jakob disease in 2014. She died shortly thereafter.
Dementia of any kind is a horrible, isolating illness. I often tell people that it’s harder on the caretaker than it is on the person experiencing it. We’re the ones who have to watch them decline. We’re the ones who have to watch them forget. We lose them twice- once when they forget us and again when their body gives out.
I’m not writing this because I want you to know how tragic this diagnosis is — you already know that. I’m writing it because I want you to know what I didn’t.
It wasn’t until after my mother died that I learned that playing her favorite music was a way I could have connected with her. And telling stories from my childhood could have maybe triggered some memories. I know that sounds silly — but try it. I wish I had.
Treat your father as if he’s in good health. Tell him stories. Show him his favorite TV shows. If he gets confused about things, gently correct him or just go with it.
Hey, I didn’t realize that *just going with it* was even an option. I was so bent on controlling my mother’s presence that I didn’t let her mind wander. I should have realized that there was no harm in her mind wandering.
Let’s get down to the nitty-gritty. Here’s the really funky part- no one is going to understand unless they’ve been through it. Nope! Unless someone has lost a loved one to dementia, they aren’t going to get it. They won’t understand the frustration when you just get mad. They won’t understand the sadness when they don’t remember how to turn on the TV.
My advice is to reach out to those who do. We’re here. We’re everywhere. We know how bad it feels when our person doesn’t remember our name.
Hey… that sucks. I’m sorry. You aren’t alone.
I won’t tell you to “hang in there;” I know you’re hearing enough of that. I’m here to tell you this sucks. It’s shitty. I wish it weren’t happening to him….to you. You have every right to be angry and sad and every other emotion you’re feeling right now.
Your father doesn’t deserve this. No one does. So scream, curse, and do whatever you have to to get through it. We’re right behind you — all of us who has lost someone we love to dementia or a brain disease no one has heard of.
Love,
Anyone who has lost someone to dementia
