Whether you’ve loved someone for forty years or only for four, going through the hell of FTD or indeed any other terminal disease in painful. For everyone concerned.
The pain of watching the other half of you disappear is almost indescribable. Although many people with far more eloquence than me have tried and done a pretty good job of it.
The pain sits on your chest almost from the moment you hear those words –
“Well, it could be Frontotemporal Degeneration or early-onset Alzheimer’s Disease”
It sits on your chest and in your heart 24/7/365. It never leaves. Even when your loved one leaves, the pain doesn’t. The pain is like a new part of your body. It even becomes somewhat comfortable after a while. You just get used to it being there. It’s like a guilty secret. People may think you should probably be ‘getting’ over it’ but you know you never will, even if you pretend to be doing so.
To hell with them.
Let them try getting over it. There’s no getting over it. It is part of you, part of your life.
I recently read in a blog I follow that living with someone who has FTD is like “leading a double life” (http://wp.me/p3EOZl-kW). And she’s right. You put one part of your life to the side during the times you have to be “the caregiver”. Then you switch roles and become someone else to be mother, sister, daughter, friend , coworker, whatever.
This constant chopping and changing is confusing. You lose sight of your life. Because it isn’t how you imagined it would be. It isn’t how you wanted it to be. But it is what it is.
Physically, mentally, emotionally.
Anger is painful. That anger that comes from being unable to fix things. I am a fixer. I am a nurse, a mother, a grandmother. I fix things. I make them go away. It makes me upset, frustrated, angry when I can’t do that.
So pain, that all-encompassing feeling, takes over. And you feel pain about being in pain. You have to work really hard at letting love surface. The love is always there of course, but it is submerged under the bastard disease.
There is a constant battle between good and evil. Even when the good guy (love) wins, the baddie, FTD is always waiting in the wings to knock it back down again. You can’t stop it taking your loved one but you can stop it taking you.
Because true love endures of course. Even through the pain and the battles. It doesn’t always feel that way, but it does.
To quote Winston Churchill – “If you’re going through hell, keep going”