matching tracksuits

Last night just before I went to bed, L said, “I think Papa’s talking to himself again.” There was a certain temptation to just let it go, to hope that it was nothing serious and that he would simply go back to sleep. But I heard his panicked voice and realized that was not to happen.

I went into his room and discovered how far things had fallen apart. He’s pulled out both ends of his cpap tube and then tied the tube into knots around and through the metal pull handle that hangs above his bed. He’d kicked out the pad that keeps the sheet dry from brief leaks. His sheet and blanket were in a wad on the side of the bed,  both wet. His fitted sheet was wet, and his shirt was damp. In short, there was no way he would be able to go back to sleep without a major rescue operation.

Even if he were dry, his mental state was not conducive to sleep. His head was bobbing like mad, and his breathing was heavy and fast, not quite hyperventilating but close.

“Get my phone and call the hospice nurse,” K said. We knew we had to get him calmed down, and done so quickly, but I wasn’t expecting the nurse’s instructions: 5 ml of morphine.

“So we’re already to the morphine,” I thought. And that makes me think that we don’t have much more time with him. Once someone is bedridden and using morphine, the end is not far off.

We got him changed and his bed remade, then gave him the morphine. We were supposed to put it under his tongue, but I had difficulty get Papa to open his mouth let alone raise his tongue. We gave him the med and he calmed quickly. We made it through the night without further incidents, but he’s been sleeping most of the morning today.

When Nana passed away a couple of years ago, I started going through all the pictures from their house. She’d gone through them herself a few years earlier and thrown out a lot, organizing the remaining pictures by year. Over the last couple of years, I’ve been scanning them and running them through Lightroom. They’re small pictures, and the resulting images are noticeably lacking in quality, but the idea is clear.

Gymnastics with Papa was a common theme when I was a few years older than E is now. One of our favorite tricks was the leg flip: holding my by my upper arms, Papa would flip me over his head, and I would land with a solid thump that sometimes jarred me throughout my body, though I never said anything.

When I was younger, the Steam Shovel was a favorite: pulling me over his chest to his head, Papa would lift me up, pause, then pop me over to his knees where I’d slide down. This was a favorite when I was very young; when I got a little older (like in these pictures), I didn’t enjoy it as much, but I never told Papa.

“Let’s do the Steam Shovel!” he’d suggest, and I’d willingly play along.

Then of course there was the simple benchpress. What was not to love about that?

I look at these pictures now, realizing that my father in these pictures is almost five to ten years younger than I am now, and I marvel at how young he is. How young and energetic, how strong.

Given how he’s suffering from Parkinson’s now and how rapidly it’s advancing, how it’s robbing him of his ability to move, his ability to think clearly, his ability to experience reality without the doubts of whether what he’s seeing is in fact happening, his ability to live in short — given all that, the man in these pictures looks like a different man entirely.

One thing that hasn’t changed is his sense of humor. He’s not able to get down in the floor and be goofy with E or L like he used to, but occasionally he’ll make a comment here and there that shows that goofy silliness is still there.

One of the countless tricky things about Parkinson’s, we’re learning, is its complete unpredictability. With other diseases, doctors can provide a sense of scale and timing: you are here now; the next step will likely be this; that step will happen most likely in x to y time. With Parkinson’s, the next challenge isn’t always defined. The next step is always in the dark. The time it all takes is always a mystery. And so when a Parkinson’s patient has a bad day, it’s tough to know whether it’s just that or the next step.

“But I thought Parkinson’s was a slow, degenerative disease without sudden declines.”

So did I, but that too is a variable. Mostly, if we’re talking about the termor dominant form, that’s likely the case; if they have the P.I.G.D. (Partial Instability Gait Difficulty) form, there can be, apparently, sudden declines. Papa, sadly, has the P.I.G.D. form. Each change, then, might be a significant change or just a bad day.