friday reflections – may 21

Yesterday I saw my dad for the first time in fifteen months. My mom, too, but I’ve been able to speak with her on the phone and Facetime and Marco Polo throughout the pandemic.

Since my last visit, in February 2020, my dad has changed so much. He no longer speaks. Or, I should say, no longer speaks with any coherence. He does mumble. And when he does we lean forward, listening, squinting, trying to grasp what he’s saying; trying to find some tiny thread we might be able to pinch between our fingers; some infinitesimal connection we might be able to make.

He also no longer walks on his own. Apparently he still attempts to walk but really shouldn’t. He’s most often in a wheelchair or using a walker. And he no longer feeds himself. My mom brought some chocolate yesterday that she broke into tiny pieces and put into his mouth, like a bird.

It’s not like the movies. It’s not like the scene in The Notebook where the woman becomes suddenly, magically coherent, asking “How long have we got?” as she and her husband dance and sway in each other’s arms. That would be cool. It would be cool if my dad had moments, however brief, when he was like “oh, it’s you! Tell me everything before I gotta bounce again.”

And yet, he’s still totally himself. He didn’t say my name and I didn’t find any frayed edges of his strange murmuring to take up but he looked straight at me several times and his eyes were clear and searching. He did all sorts of strange things with his hands (patting them in patterns on his leg and waving them around) that so closely resembled the funny things he used to do with our boys when they were little, to make them laugh or forget about a scraped knee, and I know that a stranger would think he’s just a demented old man no longer in control of his arms. But I know what he was doing. Or at least I think I do. It was completely on brand and it made me so happy. And once, after he had waved his arms around, he dropped them into his lap with a flourish, turned to me, and gave me a goofy grin, the only smile I saw yesterday.

It was sad. It was good. It was good to be in the same room with him. To share the same space for an hour. They kicked us out when we went over our allotted time — visits are still restricted — but I’m going back today. And tomorrow. And Monday before I fly back home. It was sad because Alzheimer’s is sad and I miss him so much. There is such a strangeness to the here-not-here nature of dementia and I still feel the grip of anger in my chest that he’s been sick for eleven years and that he’s been here-but-not-here for so long. There are so many things I want him to know about my boys and about me and so many questions I wished I had asked him but didn’t.

There isn’t much comfort with this disease. I want to say there is but there really isn’t. There is, however, this: when my mom and I had dinner last night after our visit, we talked about how sad we are but how un-sad he seems. He doesn’t seem sad. And when I asked him several years ago if having Alzheimer’s was scary, he said “no.” No, he said. “It’s not scary. It just… is.” It has seemed, for him, to be mostly a long, glacial drift toward something else, some other consciousness, and there is, at least, comfort in that.