As a child, I started counting daylight minutes beginning with the winter solstice. Today, at age 64, I stand still in the sun on the longest day, but for a different reason. The longest day has new meaning for me as I battle Alzheimer’s disease. For those afflicted, and for their caregivers, each day brings new trials from sunrise to sunset; every day is the Longest Day.
As one of 10 kids in an Irish Catholic family, I learned early on that you never get mad; you get even. I seek now to get even with Alzheimer’s, as teams around the world come together to honor the strength, passion and endurance of those facing the disease on this day of memory.
I’ve entered the moderate stage the doctors say, but there is plenty of baseball left to play. The advanced stage—the stereotypical perception of Alzheimer’s—is characterized by wandering and a complete shutdown of cognitive and body functions. Working off a “cognitive reserve,” doctors have told me to slow down because it’s lights out when the tank goes dry.
For me, the mornings are always the same. In disarray at first light, I must refocus on the five Ws: the Who, What, Where, When, and Why of life, as if rebooting my faithful MacBook Pro before tossing the covers and organizing the scattered files of my mind. I do this out of instinct, but there’s always the depression, fear, and angst to walk through—and that’s just on the way to the bathroom where, on doctors’ advice, I’ve begun labeling the toiletries as I have attempted to brush my teeth with liquid soap, and gargled briefly with rubbing alcohol.
Then, I go deep into my lists—notes for everything, printed and on a digital calendar with repeat advisories. My life has become a constant strategy. I have a playbook, a script, a backup for everything. Sometimes, the stratagem is just showing up, other times it’s deflection; more often, it’s an ongoing quest for excellence, understanding as best as possible the new boundaries. I have a formidable enemy—my own mind. It used to be my best friend. I don’t see any chance now for reconciliation. I think of my brain today as more like a smart phone: still a sophisticated device, but one that constantly freezes up, shuts down without notice, drops calls, pocket dials with random or inappropriate conversation, and has a small battery that takes forever to charge.