There are times when I think my most creative work is what I do with Mom. I am not always happy about this.
I work (when I can) in a creative field – theater – and I miss the work when I don’t have a job. Acting is deeply fulfilling for me, for reasons I don’t actually understand and probably never will. I only know that I feel like I’m tapping into my deeper self, or doing what I’m supposed to be doing, or living at the intersection of my passion and the world’s need (as my sister puts it) when I am acting.
But acting jobs seldom grow on trees, and when they do, they require a great deal of care and tending. Hence, there have been long periods in the past four years when I’ve either failed to get an acting job or chosen not to seek one because I felt overwhelmed by the time and energy it would take to do a show and grapple with Mom’s dementia.
Sometimes, in those non-theatrical periods, I find myself channeling my creative energy into care-giving, as if it were an open rehearsal for a new play: focusing on my scene partner (Mom), listening to her dialogue, entering into her reality, improvising scenarios that enrich her personal drama, even dealing with props and wardrobe (the glasses, the hearing aid, the endless laundry).
Of course it’s not really a play we’re enacting. It’s real life. But it’s a life infused with the fictions her brain serves up, so it feels like a concoction of some sort. What is it that she and I are creating together?
A story, perhaps? Something like a fitting end or a final chapter to a life well-lived?
Or is our creation more like a quilt, patched together with whatever scraps of memory and humor and frustration we have on hand each day?
Or maybe a piece of music, sometimes harmonious, sometimes dissonant? Or a dance? I don’t know. I only know it helps me to think of dementia care as a creative act. Because otherwise, it’s just about getting through the day.
Again, this doesn’t always make me happy. I don’t want this to be my most creative work. I don’t want to sacrifice what I might be creating in other fields, just to live up to some self-generated ideal of perfect daughterhood. Nevertheless, her condition pushes me to think in entirely new ways about the human brain, about relationships, about inventing life in the present moment.
Dementia care is an invitation to live creatively. I wish I hadn’t been invited. But as long as I’m here . . . .