Sleep

I have not known Doug as a sleeper. Doug’s most creative ideas always came after sunset. He revved up as the day simmered down. When we were newly married, Doug earned a living working a graveyard shift, came home to catch a few winks, and then volunteered to hang out with the church youth group kids, leading them from one adventure to the next for the rest of the day and into the evening. I used to tell him, as convincingly as possible, “Night times are for sleeping.” I don’t think he believed me. He responded, “Sleep is overrated.”

Sleep interrupted Doug’s enthusiasm for life. There was so much more to do, be, and see. He had a new idea to pursue and more friends to visit.  There were places to travel and wood projects to build. Doug was excited about adventuring, exploring, and doing. Naps were nonexistent except for the few times he was sick or pulled an all-nighter with a bunch of teenagers at camp. It was as if sleep’s necessity slowed him down and shortened his 24-hour window of opportunity.

That has all changed. Advanced dementia has worn a deep path of sleep into Doug’s 24-hour routine. Earlier in the disease, the concept of sleep confused him and me. He was awake a lot, even when most of the city was asleep. We transitioned through layers of anxious nighttimes and wide-eyed daytimes. I eventually added a twin bed next to our king bed so I could rest. I slept there (sort of) while Doug wrestled his way through the dark. We lived tired. Ultimately, the anti-anxiety medication helped, and so did the sleeping pill his neurologist prescribed for him. Doug’s medication has been adjusted many times as the disease demands it – stealing sleep and filling the void with anxiety along the grueling process of dementia transitions. The twin next to the king is still my bed.

As Doug’s brain loses volume and strength, his waning willpower to remain awake is no match for his increased need for sleep. Sleep now dominates. His nights can still be fidgety and occasionally restless, but generally, he sleeps 10 hours, even with the nodding naps he takes, complete with snoring and twitching, throughout the day. It is not unusual for Doug to tally 4 or 5 hours of napping daily, especially after considerable activity. He sits on the oversized, comfy couch or reclines back in his “Big Chair,” closes his eyes, and nods off, like he is doing now as I write this.

It is a slow and quiet existence—nothing like before. Spontaneity, independence, and sparkle are in the past. Doug uses energy to function his physical being and little else. It is hard to watch. I miss him. I think he misses him. He still walks without assistance, very slowly and unsteady; stairs are a big challenge. He still feeds himself in a measured and clunky way; fingers are easier than utensils. He still whistles when music plays but is otherwise very quiet. He still knows his right and left and no longer dresses or bathes himself. He still loves a good foot rub and struggles with skin breakdown, necessitating special creams and medication. It all requires his complete focus and directed energy, so he sleeps to recharge and try again later.

I know Doug’s “laters” are fewer as the disease takes its toll and his sleeping becomes more and more frequent. Fun and adventure were at his core when he was healthy, leaving sleep for later. That has flipped. I’m sure if he could, he would tell you that sleep is no longer overrated. It has become the one ingredient that makes his 24-hour opportunity possible and is the very thing that will eventually crowd everything else out.

Karen