Remember that post a few months ago where I said there was a reason for my writer’s block, but I couldn’t share it yet? I think it’s time to write about it.
I have started writing this post so many times. I have typed words, deleted them, typed more words, and then saved the draft for later. I have stared at my computer screen and cried, I have yelled, and I have cried some more.
My mom has Frontotemporal Dementia (or FTD for short).
If you’re my friend on Facebook, you may have read some of the FTD facts I posted last week for World FTD Awareness Week. I was vague (on purpose) about who my affected “loved one” was. In fancy medical terms, FTD is a degenerative brain disease that affects the frontal and temporal lobes of the brain. You can read more about it online, but the main thing you should know is it is a horrible, terrible disease that steals the person you love from you little by little.
The diagnosis was official in August, but we’ve known that there was something wrong for a long time. It started off with small things, like repeated questions and misplaced objects. It gradually progressed until we couldn’t ignore it or run from it anymore. I thought that I would be relieved to finally know what was wrong, to have a name for the disease afflicting my mom. Having a name gave me a term to type into Google. Google led me to a plethora of articles, medical journals, caregiver blogs, etc. Reading about this horrible disease and its progression and inevitable end quickly turned my relief into an abundance of other emotions. There is no cure for FTD.
I am angry. I want to yell and throw things. I have used a lot of profanity. I have not been a person you want to be around, and quite frankly that’s okay. I haven’t really wanted to be around people anyway.
I am sad. I can’t talk about it without crying. I have tears streaming down my face as I write this. I want to lay in bed all day and sleep. If I just pull the covers over my head and take a nap, I don’t have to think about it.
I am jealous. I’m so envious of my friends with healthy mothers. My mom is my best friend. I used to call her multiple times per day, just to check in and see how she was doing. We could chat about anything. Now, the phone calls are shorter and less frequent. It’s hard for her to follow conversations, especially over the phone. It’s too painful for me to talk to her, so selfishly I don’t call as often. I crave a close relationship with my mom again, but this stupid disease is standing in the way.
I feel guilty. Guilty for not calling, or being there like I should be for her and my dad. It’s hard to push my own pain aside, but I’m trying.
The worst part of FTD is knowing that there is no cure. No one survives this disease. I felt awful to say it out loud, but I asked my husband recently why it couldn’t be cancer. At least with cancer, you can fight it. There’s a chance. There is no chance with FTD. It will continue to steal my mother away every single day.
I usually close my blog posts with some sort of happy ending, or a positive note. What can I say here? There is no bright side to FTD. I hate this damn disease.