In general, my life runs on a carefully set clock, a well-kept day planner, a neatly annotated calendar.
I wake up at a certain time and play Wordle every single day. I eat lunch early. I walk the dogs after dark when it’s cooler. I take a bath before my consistent bedtime, and I go to sleep with my pillows stacked in a particular way.
I have staff meetings on Tuesdays. I have neighborhood gatherings on Fridays. On Sundays, I meal prep and cook for the community fridges.
I see my doctor every August for bloodwork and get a mammogram every October. The dogs go to the vet in April for their shots. We go to Amite for the holidays, and in January, my husband and I will have been married for 15 years.
I like the routine. I like knowing what to expect. I’ve always been like this, even as a little kid, eager for structure and predictability.
But because I now am the primary caregiver to my 88-year-old father, who was recently diagnosed with Lewy body dementia, so much of my life is now running on a different timetable, parallel to the other one.
Some of that world is routine, for sure. My dad’s other caretakers come at predictable times: the occupational therapist, the home health aides, the lovely neighbors from next door who put his trash at the curb once a week. We have doctor’s appointments – so many doctor’s appointments – that we have to keep: the orthopedist, the neurologist, the ENT. I go every week for his groceries, the few things he will still eat: grapefruit, tomato soup, Blue Bell strawberry ice cream.
But some of it is, in its most clinical sense, completely insane. He calls me at 3 a.m., thinking I’m just getting off of work. He insists the year is 1988. He tells me the newspaper said it was four different days. He asks why I sent an entire theatre troupe to his house in the middle of the night to act out a Shakespeare play.
It’s impossible to make sense of that, and often lately, I have the eerie sense of straddling two time zones.
In one, things are humming along, carefully calibrated. July gives way to August, as it always does; school starts again; the weather starts to cool (if we’re lucky). I know the birthdays, the anniversaries, the school holidays. I know when my older daughter will be home from college, when my younger one has to go to the orthodontist.
In the other zone, nothing can be predicted. Sometimes my dad will think I am someone else or that I am 20 years younger or that it is 40 years ago. Sometimes he will think I am his second wife; sometimes he will ask me where my mother is, even though she died more than five years ago and they had been divorced for decades before that. Sometimes the neighbors will call because my dad is on their porch, disoriented in a neighborhood he has lived in since 1992. And sometimes he has an afternoon so normal, so rational, so achingly lucid that I wonder if maybe he might be OK after all, even though I know better.
Dementia does not care about my calendar. It does not care about my Wordle streak. It does not care about my carefully constructed routines or my mutual aid work. It is cruel and relentless and frustrating. And yet, I have no choice but to navigate it, imperfectly but the best I can.
My father and I no longer live on the same timetable, but our lives still overlap – we have a shared past and a confusing present and an uncertain future, and I know that caring for him is a gift to us both in many ways. In those overlapping moments, I am trying to be less concerned with keeping everything on schedule and more concerned with simply keeping him company, no matter who he thinks I am.
