Alzheimer's

This story might as well be my own.

These days, other than close friends or family, when someone asks me how my mom is, I say, "she passed away when I was a teenager". They usually say, "Oh, I'm sorry". Then we move on. The real story doesn't fit into a small-talk conversation. It's too long and nuanced. Too brutal. Too unresolved.

She was diagnosed with early-onset Alzheimer's when I was around 12 years old. We (My dad, brother, and I) cared for her at home for about the next decade. Somewhere along the way, she forgot how to speak, how to eat, and who we were.

There was a phase where she would slip out of the house and go for walks on her own. I remember following her at a distance for a bit, letting her enjoy the agency and solitude of a walk around the neighborhood, before catching up to her and holding her hand so she didn't feel lost and alone.

One time, she gave us the slip real good. This was when I was maybe 16 years old. I searched the whole neighborhood to no avail. I eventually found her about a mile away, talking to strangers and laughing at the nearest grocery store. It was a strange phase of the disease — she could still walk and talk mostly, but would often forget major things.

Unfortunately on this day, she didn't know who I was or what "home" was. When I said "let's go home, mom", she started screaming at me in the grocery store, trying to fight me off and run away. "Get away from me", "I don't know who you are". "Stop!" Everyone watched. I don't think the watchers understood what was happening. I couldn't help but think I was somehow perversely benefitting from being on the wrong side of the bystander effect. She fought me the whole way home. The next day, it was like nothing happened.

Every son or daughter that has cared for a parent with dementia likely has hundreds of such stories. It is the ultimate form of hothousing for suffering and loss.

And yet, despite these stories, this couldn't be more true:

So far, with the help of her family, the day program and the sheer force of her own will and devotion to Jo, Robin has managed to provide all his caregiving at home. Families of people with dementia land in different places on this issue, but to her, it's beyond question that Jo is not here anymore; most everything that made him Jo has been stolen. "But it’s almost like an echo that’s left," she says. "It’s like I want to take care of this Jo because it’s honouring the real Jo."

When she's forced to move Jo into a nursing home and Robin loses her ability to care every day for the echo of the man she married, that will mean he's really gone. "Sometimes people very kindly say, 'Oh, it will be better when Jo is living somewhere else.' No, it won’t. That’s the part that people don’t understand. It won’t be better. It will be the worst part," she says through sobs. "Because I don’t consider what I'm doing a negative thing."