Fathers and Sons.
“Dementia with Lewy bodies (DLB) is one of the most common types of progressive dementia. The central feature of DLB is progressive cognitive decline, combined with three additional defining features: (1) pronounced “fluctuations” in alertness and attention, such as frequent drowsiness, lethargy, lengthy periods of time spent staring into space, or disorganized speech; (2) recurrent visual hallucinations, and (3) parkinsonian motor symptoms, such as rigidity and the loss of spontaneous movement.
“Like Alzheimer’s disease and Parkinson’s disease, DLB is a neurodegenerative disorder that results in progressive intellectual and functional deterioration. There are no known therapies to stop or slow the progression of DLB. Average survival after the time of diagnosis is similar to that in Alzheimer’s disease, about 8 years, with progressively increasing disability.”
National Institute of Neuralogical Disorders and Stroke
I keep thinking: He can’t stand hospitals. He’s going to spend the rest of his life with doctors and nurses and he hates them. Further down the line, he’s going to be even more disoriented and out of it, and he’s going to be living with strangers. He’s going to be scared and unhappy and I can’t protect him. Then I think: I won’t be able to go anywhere until January at the earliest. When we finally get married, he won’t be able to be there, and even if he can be, will he actually know what’s going on? When we have kids, he won’t be there. I spent so much time fighting against him, and now that I want him in my life – now that I need a father – he can’t be there.
My mother the psychologist says, “That’s how these relationships work. Sons fight with their fathers as teenagers. It’s how you assert your manhood.” Most of the time, sons get time to restablish that bond, though. Most of the time they don’t end up at 23 with a father diagnosed with dementia. Yesterday, I cried. I yelled that it wasn’t fair and that I shouldn’t have to deal with this. I complained about not being able to do anything from the other side of the country. My mother the psychologist says, “And what could you do if you were there?” And I say, “I don’t know. Try to fix it even though I can’t. I should be able to fix it.” And she says, “That’s the worse part about being male; you have to fix everything. Right now you have to deal with the emotions.”
Yesterday, I wanted to call my almost-father-in-law, but I didn’t. I wanted him to take my father’s place for a little while and tell me what to do. We don’t have that sort of relationship, though. We probably never will. So I called my father, and for fifteen minutes, I had absolutely no idea what he was saying, but I pretended I did.
In the past 24 hours, I’ve crammed as much information about LBD into my head as possible, and none of it makes me feel any better. Reading through the list of symptoms is like cataloging my father for the past five or six years. My mother says worrying about the death part isn’t the way to go right now, and I’m not. By the time we get to that point, it’ll be… I don’t know. They say that by the time death occurs, it’s already several years after complete cognitive decline. So, essentially, my father will be gone before he’s actually gone. And I don’t know how I feel about that. How do you deal with someone who’s there and not there at the same time? My mom’s doctor friend said the best thing I can do is see him as often as possible, so it’s not so much of a shock. Make the most of the time we have. Which really isn’t a lot of help, considering the distance and the fact that going anywhere from August to January is next to impossible work-wise, and while I would, theoretically, be able to go home over the summer, except this summer. This summer I can’t go anywhere.
I am not ready to be strong for my father. I still need him to be strong for me.
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