Snapshots of Dementia: Time Out
She nailed it.
My friend, whom I can always count on to call ’em as she sees ’em, read between the lines when I wrote about my foolish assumption that I wouldn’t need an alarm on my freezer. In case you missed that post, I learned the hard way that an alarm is an excellent idea when your loved one is living with dementia.
What my friend noticed, in her usual insightful way, was not so much the cost of the food we lost—although that was significant. Instead, she pointed out the time I lost:
— Time spent checking all the food (some of which remained frozen, much of which did not).
— Time spent throwing out the spoiled items.
— Time spent mopping the floor.
— Time spent scraping, wiping, and otherwise cleaning up the freezer.
— Time spent shopping to replace the spoiled food.
— Time spent working late to make up for the time I spent doing those all those other things.
Dementia has many hidden costs—$321 billion a year in the U.S. per a 2022 analysis. But without a doubt, one of the greatest is time—for the family or whomever is caring for the person LWD. As the disease progresses, the time spent on the person LWD only grows.
I feel blessed to have a profession in which I can, for the most part, set my own hours. When I first began working from home, one of my jobs required a regular schedule with half-hour or every-hour deadlines. I had to start by 8:30 a.m. at the latest and often worked straight through for many hours with only the smallest of breaks to check on Tom.
Over the past year and a half, God has allowed me to make some major adaptations in that schedule, and although at times I need to write or edit a piece within a few hours, I generally have a much larger window of time. That’s huge because although Tom can still do some things for himself, my time-costs have risen in the following areas:
LEAVING THE HOUSE: This aspect of our LWD life reminds me of when our kids were small and I had to allow extra time because invariably, a last-minute emergency would delay us. Our LWD last-minute emergencies include bathroom visits, retrieving forgotten items, closing doors left open, him refusing to leave until he finishes a game on his iPad, and more.
INTERRUPTIONS: This time-cost has increased significantly in the last six months. I have rarely asked Tom not to interrupt me while I work (and if I did, he wouldn’t remember). So when he misplaces his reading glasses, his Chapstick, his remote control, or something else, he asks for help—often several times a day. When he can’t solve one of his word games, he asks for help—often several times an hour.
SPILLS: I mentioned in my last post that these have become more frequent. At least once or twice a week, I clean up spills on the floor or elsewhere, all related to Tom’s dementia. This week, I removed, washed, and dried everything in our silverware drawer (including the liner) after he spilled coffee grounds throughout. Bonus: I made a small start on my spring cleaning!
DOCTOR’S APPOINTMENTS: Multiple physical problems have accompanied his dementia, many of which require doctor visits. Although we live in a small town and our primary care doctor and pain management specialist are close by, we have to travel farther away to visit his podiatrist, pulmonologist, and neurologist.
SHOPPING: Any trip takes longer if I take Tom along. Because of his physical pain, he uses a walker and moves slowly. I try not to visit the grocery store often, but when I do, I often leave him sitting in one spot and keep circling back to check on him so he doesn’t forget why he’s there and take off without me. Online shopping has also become my friend!
TRAVEL: Until this past year, I hadn’t traveled much with Tom since soon after his dementia diagnosis, largely because of the pandemic. But now that I have, I’ve noticed that dementia costs us time when we travel too. We have to stop more frequently to allow him to stretch his legs and use the restroom, and every stop takes much longer than it did pre-dementia.
On a recent trip, he felt hot and instead of adjusting the temperature in the car, he removed his sweater, then later put it back on. In the process, his sweater became entangled in his shoulder strap without my realizing what had happened. When we made an unanticipated restroom stop, he got out of the car, but the strap stopped him short. After some unsuccessful attempts on both our parts to untangle it, I put him back in the car and restarted the process. (The full story involves two nearby drunk men, lots of shouting on their part, and many prayers on my part that they wouldn’t notice our predicament.)
A church in our community offers a respite program for dementia caregivers, providing care for the person LWD one afternoon a week. I’ve filled out an application for Tom so that, if approved, he’ll have additional social interaction, and I’ll have one afternoon a week to run errands, spend time with friends, or otherwise take a break. I’ll need to make up the work time I miss, but I’ll consider it time well spent—just as I do all of the time I give Tom. Other than my faith-relationship with Jesus, he’s my top priority. And I will continue to make adjustments in my schedule as his needs require.
Yes, dementia has all sorts of hidden costs, but providing loving care for the person LWD?
Priceless.
If you or someone you love is LWD, what are the situations or circumstances that cost you time? Do you find those have increased with the progression of the disease?
Feel free to share your story in the comments below or on social media. Our story matters—and so does yours.
