I’m not sure why I want to write this blog. I know why I don’t want to write it…it isn’t to educate or console other victims families. I’m much more selfish than that. I want to write about what this disease is doing to my dad and my mom…and me. About how I would much rather lose him to a disease that takes him all at once, and not a disease that just leaves his skeletal parts behind. Somewhat operational, but not really.
It will be a personal journal for all of us, it certainly won’t be eloquent or thought-provoking. It will be raw, real and probably knowing me…full of profanity. Alzheimer’s deserves nothing less. It doesn’t deserve eloquence in its explanation of what it slowly does to somebody’s totality. It doesn’t deserve medical terms, or hopeful ramblings. It deserves exactly what it gives…it deserves pain, hopelessness…and profanity spewed whenever necessary.
My dad was diagnosed with Alzheimer’s roughly seven years ago. At first we didn’t really believe he had the big AD. We preferred to call if some type of dementia. That somehow made it more manageable and less threatening. People have had dementia for centuries and families have been able to survive it…nothing to see here folks. Just forgetfulness, or random acts of peculiarity. But now we know it as a four letter word. One I won’t use for now….
We have often used humor during the early years. Some of my friends never quite understood how I could laugh at my dads somewhat child like behavior when my mom forbid him from having another piece of pie, or another helping of meat and potatoes. Or how he sticks his tongue out at my mom when she makes him take his daily walks. Not only does he have Alzheimer’s, but he also suffers from Diabetes so she is truly not trying to torture the man.
In the beginning my friends couldn’t resist taking my dad from our boat at the local sandbar and giving him an extra beer or cigar thinking they were rescuing him from a tyrant for a wife. (Not really, everybody knows my mom as one of the sweetest people they will ever meet. It just made it more fun to rescue dad from the “tyrant.”) After several years even they realized his disease was real and he needed consistent monitoring.
After a major surgery this summer his disease has progressed rapidly. His motor skills are declining and he is confused more than he is not…
So…I will write as I need to. I will write to rid myself of the guilt I feel at times for being angry that this disease is ruining my life. Yes…my life. I already know it has ruined my parents. It has robbed him of his golden years after years of working two and three jobs to raise his family. It has robbed my mom of any peace of mind for the next ten or twenty years….depending on how long he must succumb to this piece of shit disease. And it will continue to rob me of living a somewhat guilt free life for wanting to enjoy my middle years without waiting for the next phone call to tell me he has fallen again…or worse. That he has walked outside when he wasn’t supposed to and fell in the freezing cold…
See….even as I write this I struggle with making it public knowledge that I feel sorry for myself as well as my parents. Do I really want people to know how selfish I am..or weak..or overwhelmed? I would rather people think of me as hot-headed or stubborn or even a bitch at times.
To let the world know what is happening in the dark corners of my family is not something I would ordinarily do…but these are no ordinary times for us. So….for better or worse I am going to tell my story and it will be to purge this son-of-bitching disease from those dark corners and put it out there for the world to see. HERE IT IS WORLD…NOTHING TO SEE HERE BUT A FAMILY THAT WILL SURVIVE YOU.
- Missing you! Long before you’re gone… (alanwiessner.com)