I HATE IT!
I HATE DEMENTIA!!! I apologize in advance because this one is a bummer, but I gotta get it out of me. It's hard to read I know, but believe me it's no picnic to write… Anyway, thanks for your indulgence and I promise more funny blogs will come later.
First let me say that for anyone who doesn't know, dementia SUCKS! It's such a hard thing for a family to have to go through mostly because the symptoms are so unpredictable. It's not like cancer or Parkinson's that follow a set progression – dementia is all over the place.
Even harder is having to watch dementia transform someone from the person you used to know to a shell right before your eyes. That's what I'm experiencing with my dad and it's been so much harder than I could ever have imagined. At first I was in denial, but as time progresses, there's no denying what's happening and, for lack of a better expression, it SUCKS!
Daddy was a United Methodist minister almost all my life. He had the gift of being able to make God's word understandable to anyone and he would paint word pictures that put you right in the scene. On any given Sunday he'd take you right into the lion's den with Daniel or he'd put you right beside David as he flung that stone at Goliath. It was something to behold and even then I knew it was a gift. And he could sing! He had the strongest baritone voice I ever heard. He had a natural ability to harmonize to anything. He made singing something as simple as Happy Birthday a major production (must be where I get it cause I'm forever harmonizing to everything!). Now he struggles to find the words to communicate and express himself. His speaking voice is a raspy whisper. He doesn't sing anymore…
The person I once looked to for everything is now looking to me! And it scares the stew out of me I was not ready for this role reversal at all, that's for sure. Daddy is originally from Angola, Southwest Africa. He's from the northern part of the country. Men from his town are proud. He also grew up under Portuguese colonialism, so many of his habits came from Portuguese culture, like wearing a shirt and tie EVERYDAY. My dad never wore jeans, sweats, or tennis shoes when we were growing up. (That didn't rub off on me by the way). I came to realize that was just his style. He was also a very meticulous man. To see him now struggle to do everyday tasks like getting dressed and eating breaks my heart.
Daddy's always been quiet for the most part, but he was always animated. Ever since the dementia started setting in it's like he's lost interest in everything and everyone. Old friends have come to visit and we hope their time with him will spark something, but it doesn't.
Perhaps the thing that gets to me most though, is that if I'm having trouble wrapping my brain around everything that's happening, how much more is he confused by all this? To be losing your very self and not be able to explain it to anyone or understand it yourself has to be terrifying. I feel helpless to do anything to make it better for him and that hurts. Considering I've held the title of family maintenance woman for 41 years running it's a tough spot for me to be in.
I'm also bound by cultural restrictions meaning there are some things in our culture that a daughter is just not permitted to do for her father. Consequently my mother is the primary caregiver which is hard on her because she has health issues of her own. I know it's frustrating for her and it's taking a toll on her too and I feel like my hands are tied in some ways.
So now my brother and sister and I are having hard discussions about what needs to be done in case of emergency or worse and I'm looking around for Rod Sterling cause surely I'm in the Twilight Zone! It's a mess, but then so's life. And then there's underlying question: Are going to go through the same thing? Is it hereditary? More questions than answers hang in the air as we try to make our way through one thing at a time. Thank God we have each other. I couldn't do it without them.
I still believe that everything happens for a reason even if we don't know what that reason is at the time. If nothing else, I know this experience will put me a position to help someone else who's going through the same thing, which is a good thing. At the same time, I don't have to like it – in fact I hate it with all my heart.