— Ian Sherr —
Her eyes are terrified; she doesn’t know where she is or what’s going on. But at the same time, they’re empty, like there’s nothing behind them anymore. They’re just there.
That’s the only way I can think to describe my mother’s condition these days. More than a decade after being diagnosed with early-onset Alzheimer’s disease, my mother has clutched to life much longer than most. She’s made it from her diagnosis in her late 50s to a right-full retirement age, even though she hasn’t really gotten to enjoy any of it.
My memories of her aren’t the easiest or the best. Most of what I remember was how tired she was, or how frustrated she would get when my brother or I would accidentally wake her in the middle of the day when we got home from school. She’d worked the night shift for as long as I could remember, and it largely kept her from enjoying life with us.
The first few years of her diagnosis were rather enjoyable, actually: my mother had worked night shifts since I was young and often slept through the day and most of the weekends. With my father having just retired, they were finally free to spend time together, and with my brother and me.
She drove with my father as they saw me off during my first day of college, and they visited for dinner every once in a while. As the years wore on, conversations with my mother became more circular, her asking the same question halfway through an answer. Eventually, she just stopped talking.
The Sherr family shortly before Ian’s mother was diagnosed in 1999.
My father insisted on caring for her well beyond when he should have. They lived in a house at the bottom of a canyon, built into the hill with multiple floors. They’d raised me and my brother there, seen five U.S. presidents elected there, watched three wars and lived through one of the worst natural disasters in California history. It was as much a part of them as they were part of it.
When the time came to go, it was violent. My father missed his footing on a step and nearly broke his hip. My mother, no longer able to talk or understand anything, wandered around as he laid on the floor helpless. He crawled for an hour until he could reach a telephone to call for help. When the paramedics carried him out, he knew he wouldn’t come back.
The weeks afterward were the hardest. While my father rested up, my younger brother, my girlfriend (now wife) and I fed and found care for my mother in the form of an in-home nurse. But without my father and his familiar presence, my mother began wandering—she left the home numerous times when the nurse wasn’t looking.
When we finally an Alzheimer’s care facility, she walked around the place so much her feet got blisters. Whenever I visited, she wouldn’t really look at me, but rather past me with those empty eyes.
These days, my mother alternates between maniacally talking nonsense to sitting there, her head swung low, just being there. We have a family photo from one of her better days: my younger brother, my father, me and then her looking blankly into the camera. Expressionless.
The story’s the same for most people in my position. Watching their loved one’s soul slowly evaporate out of their body is heart-wrenching. Sometimes, I don’t know how lucky we are that she’s lived so much longer than most, nor do I even have any sense of whether she’s in any pain.
She was there for a lot of my life—graduations, performances—and was able to meet many of the people important to me. Perhaps hardest was knowing that, on my wedding day, she couldn’t be there. And when I returned with photos, she didn’t understand what they were.
The Sherr family in 2010, visiting his mother in the facility where she now lives.
It feels selfish, but when I visit her these days all I can think of is whether I’ll be the one in that chair a couple decades from now. My grandmother died of Alzheimer’s within four years of being diagnosed. My mother is pushing the upper limit of how long most people live with the disease.
I’ve told my wife many times that I don’t want to end up like her, and I don’t. Who would? What scares me most isn’t the loss of dignity that comes with losing a sense of self nor my ability to do even the most basic of things. It’s the pain that comes with it.
It terrifies me to think about it. That some day I could be the one in that chair, looking back at my loved ones with those empty eyes. Being just there.