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.

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  • vj
    December 6, 2007 at 8:27 pm

    I think this is a universal sensation for those of us who get some warning before a parent becomes very sick and/or dies. As a young(er) person, I thought that my parents were going to be around as long as I am, or almost as long — and until my dad got his diagnosis, I thought I had unlimited time to spend with him. The truth is, we never have enough time. There’s always some invisible deadline. {{{{{Sara}}}}}

  • Dylan
    December 7, 2007 at 12:26 am

    I’ve thought about you and Steve a great deal this past month – both selfishly, in my capacity of missing you both, and out of concern for what I’ve gathered is a really hard trip to make with each successive year.

    Not much to say beyond the fact that I’m glad you feel strong enough to talk about it, and that I’m glad you’ll both be back when I get home again.

    In the brief pre-holiday window it would be really nice to have you over for dinner, so I can positively channel my impotent concerns by way of feeding you both and talking about good things.

  • Sara
    December 7, 2007 at 11:48 am

    Thanks, VJ. You’re right — it’s never enough.

    And Dylan, dinner sounds lovely. Let’s email about details. We’d love to come over and/or have you over — we’ve been cooking a lot lately and want to keep in practice. :)

  • Parker
    December 9, 2007 at 9:45 am

    Just as long as you don’t feel you owe us a meaningful look behind the curtain, because you don’t. But you’ll probably find this useful- using your site purely as a journal at times- later when you want to know where your head was at which time. I go back and forth on this too. It helped me to write about Mike Wieringo’s death, but I never wrote about my own dad’s. I thought about doing it a lot, but never did for some reason. Now you’ve got me puzzling over this website/blog thing all over again- are these promotional organs for us as creators, or are they touchstones for us as people?

    I guess the answer there is “yes.” At any rate, your dad sounds more fascinating with every bit I hear about him.

  • Mim
    December 12, 2007 at 3:08 pm

    How sad is this… I read this entry yesterday but had no time comment (I have a LOT of thoughts on this subject, having lost both my parents now and having the questions/stories I wanted clarification on gone forever) and in my dream last night, my mom was alive and I was telling her about your dad and how sweet that he acted as his own archivist of sorts when her boxes of stuff had been such a disorganized mess and she said to me defensively “I’m going to organize them and write up information — I’m working on it!”

    And then I woke up.

  • Sara
    December 12, 2007 at 4:41 pm

    Thanks Jeff — good reminder that I don’t owe anyone that behind-the-curtain look. (Besides, it also seems like the exact opposite of the kind of post that might attract new readers ;).

    And thanks, Mim. I actually thought of the email you sent about your dad when I was writing that post.

    I find it so fascinating how we recreate people in dreams. That happened to me after my favorite uncle died. I’ve had a lot of “Dad’s totally fine!” dreams, too.