Ch.149 Unprepared for Life After Lewy Body: My Fear of Boredom

Ch.149 Unprepared for Life After Lewy Body: My Fear of Boredom

July 9, 2022

Today, eight days after my wife Pat died from the effects of Lewy Body Dementia, I read about 100 pages of an entertaining book called The Lincoln Highway;  I picked tasty blackcaps (tiny blackberries) with my good friend Judy; I clipped nettles so that the next time we pick blackcaps we won’t get stung; I made my own breakfast, lunch and supper; I watched an entire 3 1/2 hour Milwaukee Brewers baseball game (they lost); I thought seriously about what I might do with our Lewy Body Dialogue site now that Pat has died; I was lucky enough to spot and photograph a red headed woodpecker at my bird feeder; I threw a basket of clothes into the washing machine and then into the drier; I responded to dozens of consolation notes from the kind members of the four Facebook Lewy Body groups I belong to; I even watched a ½ hour dvd on biochemistry in order to challenge my neurons to form new connections.

AND IT’S ONLY SEVEN P.M.

Pat lived at an inadequate assisted living unit and then at an excellent memory care center the last year of her life. Twice a day, most days, I drove 21 miles each way to help feed Pat lunch, went back home another 21 miles, and repeated the process for supper. All in all, I spent approximately 6 hours each day either with Pat or commuting. It felt like a full-time job. When I was not with Pat I mostly wrote for our blog or rested. Basically, being my wife’s care giver and care partner was the center of my being, both a commitment and a passion.

I could never have done all those activities mentioned above in one day before Pat passed away. I had neither the time, energy, nor inclination. But now, without the weight of responsibility and without the anxiety that comes from watching the person I love diminish day after day, I do have more energy (except when caught in the throes of my grief).

My problem is that I keep running out of things to do. Six hours a day is a lot of time to fill, especially when I haven’t had time or energy to develop hobbies and friendships over the last half-decade. I sense a ghost-like presence lingering outside the door of my consciousness: boredom. I’m scared to let him in, afraid he will be accompanied by his pal depression.

I have an identical twin, Don, who has been retired several years. He tells me that boredom is not to be feared. A little boredom is normal. There will be times when you have nothing to do. That’s life. Boredom doesn’t have to turn into depression. I’m sure he’s right. But I still am scared. I remember a chance encounter at a grocery store with an acquaintance named Bill who had been retired (involuntarily) from his school counseling job a year earlier. He looked awful. Bill told me he was bored out of his mind, so much so that he was grocery shopping today just to pass time even though he hated grocery shopping. I don’t want to become another Bill.

There is a particular Lewy Body component to my fear of boredom, I think. Being my wife’s care partner has felt like being a cast member of a Shakespearean tragedy, except that it was for real. Our time was filled with uncertainty, crises, and decline leading to the inevitable tragic conclusion. Whatever Lewy Body is, it isn’t boring. Exhausting, yes, but never boring. I haven’t been bored for a long time and I can’t imagine how to deal with it when it comes. I plan to ask other more experienced singles how they cope with boredom. Not how to avoid it but how to live with it. I need to gather some wisdom from my peers.