Snapshots of Dementia: 'He's Just Different Now'

Snapshots of Dementia: 'He's Just Different Now'
Friday, September 16, 2022 by Marti

Tom plays his trumpet for an Easter sunrise service, c. 2006.

Three snapshots. Three brief glimpses over the past week that, like the rest of my snapshots, help show you what life is like for a family living with dementia. Although Tom is the one LWD, in some ways, all those who interact with him are LWD as well. And that’s especially true for me as his care partner (for more on this term, see here).

FRIDAY AFTERNOON: GRANDPARENTS’ DAY

We took off in the middle of the day to visit our grandson’s school (he just started 4K) for Grandparents’ Day. Pre-dementia, this would have been an easy and enjoyable trip. With dementia, it was enjoyable and stressful, including:

— Leaving later than I planned because no matter how early I get Tom started, it seems he needs more time.

— Arriving to a crowded parking lot and ignoring Tom’s demand that I double-park. Because of his leg and back pain, I would like to have dropped him off at the door, but I knew he might not remember to wait for me. We had to park across a two-lane highway and walk down a small hill to the school.

— Watching Tom make a beeline for the cookie table as soon as we entered the cafeteria (first Grandparents’ Day stop). All the other grandparents were waiting in line, so it felt a little awkward, but it didn’t cause a problem.

— Because God providentially brought our grandson’s other grandparents there at the same time, we entered his classroom together. Lincoln’s delighted “Nana and Papa! Grandma and Grandpa!” made everything worthwhile for all of us.

— Following Lincoln through two crowded hallways so he could show us the STEM room. With a very active almost five-year-old and Grandpa on a walker, this was challenging enough, but it became even more so when Tom left for the restroom as soon as we arrived. Somehow, I was able to corral Tom, have Lincoln escort us, and return to the STEM room and then his classroom with no mishaps beyond my own elevated heart rate.

— Returning to the classroom to learn that his teacher and his other grandparents had been concerned about our long absence. I found myself apologizing for a situation I couldn’t have controlled, and I thought: This is who he is now. He can’t plan ahead, so I need to learn to expect the unexpected. I also need to adjust the things we do together—or ask for more help along the way.

He’s still Tom; he’s just different now. And it’s OK.

WEDNESDAY EVENING: Tom has started helping with a children’s choir at our church. This came at his initiative; he has led many similar choirs over the years. Because music is so important to him, I thought it might be a good outlet and a way to give him another significant task.

But it hasn’t turned out the way I’d hoped. And evenings can be a challenge for those LWD. During the practice time, I stay in the background, allowing him to lead alongside the children’s minister. So far, he’s more passive than active, watching and listening to the kids but not even trying to direct. He licks his lips constantly as he stares down at the music. The first night, he was holding a small piece of paper as we left the room, and I asked if he needed it. “Oh, I was going to write down some comments while they sang, but everything just went so fast," he said.

Both Wednesdays, I’ve looked at him, the person who used to be so animated in all of his directing, and thought: This is who he is now. He can’t direct anymore because he can’t process his thoughts quickly enough. But he still loves the music, loves God, and loves the children. I’m so grateful for a church family that accepts him as he is.

He’s still Tom; he’s just different now. And it’s OK.

THURSDAY MORNING: I’ve written about our church’s senior adult choir and our ministry to local nursing homes and adult care centers. Tom thinks much more clearly in the morning (see above). We visited an adult day care today, and I think we all came away knowing we had seen God at work.

The activities director seemed like a perfect fit for her position. Warm and outgoing, she included us in a fun, riddle-type quiz she was sharing with those in her care. One of her questions, “What animal should you not play poker with?” had the suggested response of “card shark,” but Tom had an even better one: “A cheetah!” Although much of his wit consists of funny lines he’s said for years, moments like this show me his personality remains.

The activities director and most of the patients sang or moved along with us, which always improves the experience for everyone. Tom picked up on the enthusiasm and not only took a few moonwalking steps (one of his signature moves) but also decided to add movement to one of our songs in which the men and women alternate. Every time the men sang, he stood up, then sat back down when the women sang.

As I watched him, I thought: I am so thankful for this ministry. I never could have anticipated that my husband with dementia would be ministering to those who also have dementia, but how like God to continue using him to show His love. And how like Tom to have fun, and help others have fun, in the process.

He’s still Tom; he's just different now. And it’s OK.

If you and/or your loved one is living with dementia, what snapshots stick in your mind? Do you have moments where you see a glimpse of who your loved one was pre-dementia? Are there times where their deficits seem more prominent than at others? Feel free to share your response on social media or in the comments below. Our story matters—and so does yours.

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