Snapshots of Dementia: Tired Out

Snapshots of Dementia: Tired Out
Friday, October 21, 2022 by Marti

I anticipate this being a short post because, well, I’m tired.

That description still applies to me too often, but I know it also applies to many of my fellow care partners—for all sorts of reasons.

Some of my exhaustion is my fault. I make choices, such as I did today, to do outside activities with Tom. But taking time off during the day usually means I have extra work to do in the evening.

As a normal part of our evening, I walk after dinner while watching TV with Tom. We used to walk outside, but his leg and back pain make that impossible right now, and I can’t leave him alone while I walk. Still, he’s happy to share something he enjoys with me, and I'm happy to keep up my steps. Tonight, I stopped walking at about 9 and came back to edit some articles—and still had this blog to write. Tom went to bed about 9:30, so I had to stop, give him his medicine and help him get settled for the night.

But I digress. Probably because, well, I’m tired.

For more than two weeks now, Tom has fallen into a pattern of waking up early—”late” for him right now is 5:30 a.m—and not going back to sleep. Sometimes he’s gotten up as early as 3 a.m.

Sleep disturbances have become a regular part of our dementia journey. Tom has taken medication to help him sleep since soon after diagnosis, and we’ve added/changed medications (prescriptions along with melatonin) here and there in response to episodes of extreme unrest.

This is the third time in 2022 that we’ve gotten into a cycle that has him waking up earlier and earlier. That gets complicated for several reasons. If he wakes up early, he tends to nap later on. When he naps, he’s not as tired at night, so he wakes up early again the next day. You get the picture—and well, I’m tired.

I've also become a light sleeper now that I’m a care partner. Much like a mother with a newborn, I keep one ear out for Tom and almost always know when he gets up to use the bathroom or to stay up. I listen to make sure he’s settled into his recliner.

So far, he hasn’t tried to take a walk, eat, or even make coffee when he gets up early; he simply goes to his recliner and starts his morning routine of reading his Bible, playing games on his iPad and, when it begins, listening to “Morning Edition.” (Interestingly, although we’ve lived in South Carolina for nearly three years, he prefers the Orlando public radio station he listened to when we lived in Florida—a comfort-zone behavior like the others I’ve mentioned here and there.)

When you have dementia, you live more and more in the moment. Living in the moment means you rarely think, Oh, I should be quiet. My wife is trying to sleep—or, if you do, you don’t have the capacity to be quiet. Although he does play the radio at a low volume, he doesn’t realize that activities such as opening and closing drawers or leaving lights on will bother me. Today, he did something he rarely does anymore and went out to get the paper, so I heard the notification of our video doorbell as well as him opening and closing the door. And well, I’m tired.

Suffice it to say that I often have a difficult time going back to sleep. I can do this for a few days without much trouble, but I can’t keep it up forever. I might be grateful for weekends when I can catch up on rest, but dementia has no weekends. Last Saturday, although we had just returned from a 400-mile trip, getting home at nearly midnight, Tom was awake by 6 a.m. I do put his needs above my own, but I also need to sleep well and think well so I can do a good job taking care of him as well as fulfilling my work responsibilities.

The last time we hit one of these cycles, it took about three weeks before I couldn’t do it anymore. By that point, Tom was getting up at 2 or 3 a.m., and we were both exhausted. I avoided contacting the neurologist for a while, just as I’m doing right now, because I didn’t want to add more medication to his already-long list. But when I did, the nurse practitioner told me two helpful things: 1. We could increase his low-dose nighttime sedative with no fear of hurting his cognition. 2. Sleep deprivation affects our thinking, so although it isn’t good for anyone, it’s really not good for someone with dementia. We made a slight adjustment to one prescription, and he’s done fine ever since.

Until now. And well, I’m tired.

I will add that the nurse also gave me an unhelpful piece of advice: “Try not to let him nap during the day.” I can still remember how hard it is to keep a sleepy child from napping. It’s not any easier with an adult who is living with dementia.

Even if I told Tom not to take a nap, it wouldn’t work. I try not to let him sleep more than an hour or two, but this sleep problem persists whether or not he naps during the day. Some days, he gets up at 4 or 5 and goes all day without a nap, still going to bed between 9 and 10 p.m. Last year, he often took two or three naps a day and still slept all night. Rumor has it that I miss those days.

I’ve heard and read from others that a weighted blanket can help improve sleep. I’m never the first one to jump on a trend, but after this latest battle with sleep issues, guess what I ordered this week?

If that doesn’t help, I plan to contact his neurologist. Because (you guessed it) I’m tired.

If you or someone you know is living with dementia, have you battled sleep issues? As you see, they can be a problem both for the person living with dementia as well as for the care partner. What steps have you taken to resolve this problem? Our story matters—and so does yours.

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