I love my father-in-law like he’s my own Dad. Steve and I have always gotten along and I’ve always looked up to him. And having lost my own dad at a young age, I’ve always considered myself lucky to have him in my life .
Things have been different the last few years with Lewy Body Dementia tightening its grip on Steve. On the surface, he’s not the same guy as he was. The quick wit, the bad (but funny) puns, and the welcoming smile are (mostly) gone. So is the active lifestyle and the gregarious personality–along with just about everything else that made him so uniquely Steve. Beneath the surface, though, real Steve is still in there.
He’s Still in there, just covered by his Lewy Body Dementia
Real Steve is illusive but definitely still there. There isn’t one thing we can say or do to draw him out. Or at least we haven’t found it yet. Instead of banging our heads against the wall to figure out how to pull real Steve out, we focus on the little things. The little moments. So in the random times he does appear, we don’t miss it.
We talk about the Red Sox and the Patriots. We talk about the kids. We talk about his brothers and his friends. We talk about the weather and the news. We talk about the things we’ve always talked about. It’s just that now the talking is a one-way street. Given his Lewy Body, Steve has to search for words and the right way to put them together. If he is conversing (or trying to), it just seems difficult. As a result, he doesn’t give much back in a conversation. It’s sad if we dwell on it but we try hard not to. Most important, we keep engaging, day after day and moment after moment, because we know real Steve appreciates the conversation.
When they come, the rewards are sweet
Our belief in real Steve is what keeps us going. Along with the sporadic reward we get in the littlest of moments when real Steve shows himself. It’s just for a second–a quip, a look, a laugh, a reaction–but it’s exhilarating when it happens. Kind of like seeing a shooting star or catching a firefly, but better.
The other day I was driving home and about to pull into my driveway. I paused for a second at the bottom of the driveway and considered getting the mail. Idling with my foot on the brake as I weighed the benefits of stepping out to get the mail against the benefits of not, suddenly a family of deer sprinted directly in front of my car. They were gone in a blink, sprinted across the base of my driveway and into the woods. They were probably 8 or 10 feet in front of the hood. I’d never been that close to a family of deer before. It was a nice little mid-day treat that left me feeling a shot of adrenaline.
As I was getting out of my car a minute later, in pulled Steve and his caregiver, Carol. Before Steve could get out, I was at the window telling him the story–hands pointing and flailing due to the adrenaline “They were this close…you should have seen it….keep an eye out when you’re sitting on your bench today….” I was telling him. As I was talking, a big smile came across his face. “That’s terrific. Was it Bambi?” he asked sheepishly with his big grin now evolving into his subtle (and classic) laugh-at-his-own-joke-laugh. Real Steve.
It was a little moment. Our conversation was over almost as quickly as the deer disappeared into the woods. But it was natural. It seemed effortless for him. It was a glimpse of real expression. He was telling the Lewy Body to screw–just for a moment and it was sweet.
It was real Steve. It was like catching a firefly but better and it made my whole day.
The littlest of moments really do matter when caring for an aging parent. What are the little moments that get you through the day?