I’ve been in Florida for the past few days visiting my 92-year-old father-in-law, who was been plagued by dementia. Despite the warm, sunny weather and proximity to the beach, this is never a trip I look forward to–even as I’m touched by N.’s stretches of cogent lucidity between the storms of anger and confusion, where he talks poignantly about how sad he is that his life has changed so much. As someone who valued his independence above all else, as he continues to point out when asked to look back on some of the happier times in his life, having to succumb to 24-hour care and supervision often makes him feel that his life isn’t worth living any more.
But I know I need to accept things, he says to me over dinner. And enjoy what I can, like this food. And be happy that I can stay in my apartment, and that I have a wonderful family. I know I need to be grateful for all of that.
It’s an easy adage to repeat. But much harder for anyone–those with dementia and those without–to implement. How do we truly reach a place of gratitude and acceptance of whatever happens to befall us? Especially, when we can’t change the situation, but even when we think we can?
I recognize the extreme privilege I’ve had in my life up until now of not having dementia or some other life-changing debilitating disease. And yet, as both a continually aspiring and a recovering perfectionist, I find myself constantly navigating the question of when I should push myself to do something better than I’m currently able, and when I should accept the status quo. Especially in my creative pursuits. A couple of weeks ago, I wrote about learning Kol Nidre on the piano, and trying to accept that I would likely never play it at the level I wanted to. And in writing, as well, while I’m generally pleased with many of the things I’ve written, it’s hard to stop berating myself for not writing as well as ____________ (hundreds of names could fill in that blank) or not having accomplished as much in my writing career as more recognized writers.
As I sit on the beach, I try to practice some of the meditation techniques I’ve learned from the app I’ve been using this past year. Label the breaths: in/out, try to match them up with the waves. I get distracted easily. There’s a radio playing. A helicopter overhead. And I’m still on edge from just having to tell N. at least five times–or seven–or ten–what the plan is for the next day. He’ll have lunch with his aide at the senior center, as usual. We’ll come over after he gets back–in the afternoon, and take him back to our place and make him dinner.
He frowns. I need to go to the senior center.
I tell him one more time that we’ll see him after the senior center.
The lady (his aide) will be lonely if I leave, he protests.
I’m sure she understands that it’s important for you to spend time with your family.
I keep trying to understand things, he tells me. And when I ask someone to explain it to me, I can tell that they think I’m a pain in the ass, but I’m just trying to understand.
You’ve always been very persistent, I tell him, remembering the hours and hours he put in every day, writing down steps, studying videos, when learning to ballroom dance. It’s both a strength you have, but now it’s also a curse, because there are some things your brain can’t process. Please trust us and don’t worry so much about tomorrow. The day will work out.
But he doesn’t let go of the worry. And why should he, just because I tell him to? Cultivating faith that things will work out is a hard habit for those of us who’ve spent our lives priding ourselves on our own agency in making things happen.
I get up from the beach. No way I’m going to get anywhere near a state of inner peace tonight. Yet, I make sure to express gratitude for the sloshy sound of the waves and their dependable rhythms as the world just keeps doing its thing–with us, or without us.
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