Snapshots of Dementia: Pro Tips

Snapshots of Dementia: Pro Tips
Friday, November 11, 2022 by Marti

Big things can hurt us—a heart attack, a broken bone, a dangerous diagnosis, the loss of a friend or family member. But little things sometimes hurt us too. Here are some of the big little things we’ve encountered this week in our dementia journey—and a few tips I learned along the way.

Time Change: When our oldest kids were toddlers and Daylight Saving Time ended, we would tape black plastic over their windows to try to ensure better sleep for the first week or two post-switch. Most of the time, it didn’t work.

I’ve felt tempted to do the same this week, because when we “fell back,” Tom didn’t. He’s gotten up at 4 or 5 a.m. most days this week, and since I tend to stay up for a while working (or writing this blog) after he goes to bed, I’m worn out.

PRO TIP: If you're caring for a partner who is living with dementia, going to bed when they do—as long as it’s not, say, right after dinner—makes a lot of sense. It’s always easier for the person who is not LWD to change their habits than for the person LWD to do so. As a lifetime night owl, I know I won’t do this every night, but I’ll try. Again.

Feeding Frenzy: Near the beginning of the week, I made two small coffee cakes. I found fresh blueberries on sale, and this recipe is one of Tom's longtime favorites. That’s why I was surprised when, after a couple of days, he hadn’t eaten any. “I made your favorite coffee cake,” I told him.

His answer also surprised me: “I have to eat my cereal.”

“Couldn’t you eat coffee cake too?” I asked. He didn’t respond, which either means he didn’t understand or couldn’t process an answer before he forgot my question.

But I soon figured out what he meant. We had recently bought multiple boxes of Chex (three kinds in one giant package). Tom loves Chex, and he happily placed four huge boxes of it in our cart at a club store not long ago. I bought it because, although we don’t really need so much on hand, it’s better for him than many other kinds of cereal, and I knew it would keep.

I realized his mixed-up, LWD logic was telling him it was more important to eat the cereal than the coffee cake. People LWD lack the logic that would say homemade coffeecake spoils much more quickly than processed cereal and fresh baked goods taste much better than older ones. In Tom’s world, “I have to eat my cereal.”

I wrapped up one coffee cake and froze it, sharing some of the other with a friend and grateful to have navigated his illogical logic. Of course, even though “I have to eat my cereal,” he ate a giant piece of coffeecake that afternoon and has now finished it all.

PRO TIP: People LWD often lack logic. What makes sense to you may not make sense to them, and vice versa. Choose your battles. And if you really need that coffee cake to disappear, hide the cereal!

Schedule Swap: As a homeschool mom with five children at home, structure and order were my friends. I learned not to let the schedule run our lives, but in general, a good routine helped our days go well.

Now that I’m a care partner for a husband who is more and more childlike, structure and order are still my friends. This week, I had an afternoon hair appointment that began 45 minutes late. This wouldn’t have mattered much (other than the loss of work time) if I were the only one waiting, but I had taken Tom along. Our local family members were working, and I thought the appointment would be quick.

It wasn’t.

By the time Tom sat for nearly two hours, he was exhausted. Being in a different setting with different people/different temperature/different music upset him. He wasn't angry, but by the time we left the salon, he had little ability to communicate, and he seemed “off” the rest of the evening.

This all took place on a Wednesday, when we have supper at church and then help with a kid’s missions program (me) and children’s choir (Tom). Evening is always a challenging time for him, but that night, he was quieter and more confused than usual.

PRO TIP: When you’re caring for someone who is LWD, don’t pile activities on top of one another. Simple is good.

PRO TIP: For someone LWD, routine is important. I’ll work harder to keep Tom’s the same unless it’s for activities (doctor’s appointments, family/church) that benefit him in some way.

PRO TIP: Scheduling appointments/activities when the person LWD is at their best works better than dragging them around when they’re already worn out. Afternoon appointments fit my work schedule, but I need to plan around his best times—not mine.

Of course, none of these are really pro tips. They’re just little action points to help me be a true care partner for Tom, adapting to his needs and challenges in a way that makes life as pleasant for him as possible. Yet again, little is big, because little is equipping me to help him in big ways.

If you or someone you know is living with dementia, what little things have seemed big in your lives? What pro tips have you learned along the way? Feel free to share your thoughts in the comments below or on social media. Our story matters—and so does yours.

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