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    Alzheimers/ Family

    Another kind of coming out

    I was looking over my last several months’ worth of entries, and found myself more struck by what I wasn’t saying than what I was.

    I have a lot of what Garret recently called “breathless blogging type entries” and far fewer longer, more thoughtful posts. Most notably, I’ve never talked about one of the defining facts of my current life, the reason Steve and I spend a month out of the year in Ohio.

    My father, who just turned seventy-seven, has Alzheimers. He’s had the diagnosis for several years. Predictably, he is worse every time we visit. When we come, we cook, clean, assist with what caregiving guides euphemistically call “the activities of daily living,” and, in general, try our best to give my mother a respite. When we’re not here, she is his sole caregiver. By choice.

    When we’re here (and when we’re not), the TV is on all the time. It’s the only thing he can focus on. He’ll still look at the newspapers in the morning, but who knows what he gets out of them.

    Their house is full of the books he collected and can no longer read. He was a rare books and special collections librarian, and also an occasional antiquarian book dealer. When I was growing up, both my parents read to me, but Dad was the one who read to me nearly every night until I had too much homework.

    When I explore the basement or his study and turn up artifacts of our family history, they are often accompanied by labels in his careful handwriting, often on discarded catalog cards. Most of the things I’ve found, I’ve never seen before. He kept, organized, categorized so many things, but at the same time, he was always very private. He would show me family photos — he was the family genealogist — but the objects, like the scrapbooks I found this trip, or my great-grandfather’s handkerchief box that I found the time before — stayed in their boxes.

    To my eternal regret, I didn’t start snooping around until it was too late for him to answer my questions. Even my mother doesn’t know the details about a lot of what he saved. I know that I’m extraordinarily lucky to have his notes. But when I look at them, and then look at him, it underscores how much is lost.

    Please understand that I’m not writing this because I’m looking for sympathy. I’m writing this because I’m tired of avoiding all mentions of the long goodbye I’ve been saying, and am still saying, every time we come to Ohio. I’m writing this because I love my parents and I hate what this disease has done to their lives.

    In my fiction, I strive to show life in all its messiness and complexity. Yes, I want to be funny, and yes, I want my characters to have fun sometimes. But I also try — I don’t always succeed, but I try — to not flinch from writing about things that are sad and difficult. Increasingly, the stories I most respect and appreciate in all formats are the ones that pull no punches.

    I’m going to try to stop pulling my punches here.