The Things We Keep(17)

“Oh. Yeah.” He shuffles, pulling his knees to his chest and wrapping his arms around them. “Sarah’s c-cash-rich, time-poor, and a believer in finding solutions.” His throat works with the effort of speaking. “I just worry what she’ll do down the road, when the next … ‘problem’ p-presents itself.”

He doesn’t need to explain what the next problem could be. I already know. Delusional episodes. Loss of bladder and bowel control. Feeding issues. Catastrophic reactions. DNRs.

“Sarah cares, b-but … I’m not sure that she’d make the same decisions that I would, when it came to the crunch. I don’t want … diapers … the first time I have an accident or to be f-furnished with a chalkboard when my speech deteriorates. I don’t want to be … p-pushed in a chair with wheels when I can still walk.”

This little speech looks like it’s taken an enormous amount of effort. And while I don’t entirely share his convictions, there’s something to be admired about his passion. It might be the fact that it’s difficult for him to speak, or maybe just the pendulum of moods of Alzheimer’s, but as I listen to him talk, my eyes fill.

“At some point, I’m going to have to start letting go of control,” he says. “But I have n-no plans to do it without a fight. And Sarah, I can just see her—Luke’s having trouble dressing himself, let’s p-pay someone to do it for him. Luke’s not doing enough … exercise; let’s schedule some activities. Let’s give him sleeping tablets to help him s-sleep, let’s feed him. No. That’s not what I want. I don’t want to exist. I want to love.”

“Live,” I correct, but he doesn’t seem to notice.

I have to admit, I think he’s right to be wary of handing his affairs to his sister. It’s one of the reasons I don’t want my life to get to that point. As good as Jack’s intentions are, I wouldn’t want him pulling my puppet strings down the road.

“Brothers,” I say with an over-the-top sigh. It’s funny, even though we’ve just been discussing dementia-related stuff, for the last few minutes, it didn’t feel like either of us had dementia. It felt like we were just a guy and a girl, discussing life.

“Luke?”

We both glance at the doorway, where Eric is standing.

“Your doctor is here to see you,” Eric says.

“Oh. Sure.” Young Guy, Luke, rises to his feet.

“Would you like me to take you back to your room, Anna?” Eric asks.

Luke looks at me. He kicks his foot gently against mine—a benign enough gesture that somehow has me blushing. “W-will you be here when I get b-back?”

I glance to where Eric is standing: red-faced, fat and smirking. Then I look back at Luke. “Well,” I say quietly, “I’ve had some pretty tempting offers, but yeah, what the hell, why not?”

To Eric I say, “Thanks but I’m fine right here.”

Luke grins and wanders off toward Eric. In the doorway, he pauses, staring at the thin, shiny strip of metal edging on the carpet, separating the parlor from the hall. Then he lifts his foot to knee height, stepping over the strip as though it were a raised bar or stair. At first I don’t know what he’s doing. Then I do.

The first time I saw Mom do this was at my basketball championship. She’d been diagnosed with Alzheimer’s six months earlier. She’d sat in the third row during the game, cheering and clapping when we got a three-pointer (and occasionally, when the other team did). After we won, everyone tramped onto the court, greeting us with hugs and high fives. As the shooter of the winning team, I was lifted onto my team’s shoulders and tossed about. It was from there that I saw Mom. She was on the edge of the court, frowning at a line on the floor as though it were some sort of intricate puzzle she couldn’t figure out. I tapped someone to let me down, but before I could get to her, she shimmied up her skirt and stepped over the line as if it were a waist-high fence. A few people looked, but most were distracted by the commotion on the court. Once over the line, she smiled at me, a little relieved, and gave me a hug. “Congratulations, darling. Great game.”

When I told Jack about it, he told me that for some people, depth perception is one of the first things the brain casts off when it starts to degenerate, making it difficult to tell the difference between flat and raised, high and low. That’s the thing about dementia: You can forget for a moment, even an hour. But sooner or later, dementia reminds you—and everyone else—that it’s there.

*

Before I had Alzheimer’s, I used to listen to a radio competition called Beat the Bomb. Callers who dialed in had the opportunity to play for up to twenty-five thousand dollars. When the game began, the clock would start ticking, and every few seconds, an eerie, prerecorded voice would announce an amount of money. “Five … hundred … dollars. One … thousand … dollars. Five … thousand … dollars.” It kept going up. As soon as the contestant said stop, the money was theirs, but the longer they waited, the more they risked the bomb (buzzer) going off and getting nothing.

When I was sixteen, Jack and I came home one day to find Mom in the garage. The car was running, and she was in the passenger seat with the car windows open. Her head lolled against the open door. I ran to call 911 while Jack dragged her from the car. By the time I got back to them, she was awake. Drowsy, making no sense, but awake.