Season 2 Episode 1: Flowers for Algernon Haunts Me
In Surviving Alzheimer’s
Week 58: It’s been over a year now since D was initially diagnosed with Alzheimer’s. When I come home from work, I can see that she needs a change of scenery. These days, she’s been greeting me after my work day with a sense of disappointment that I left her alone that long. She might even say, “You just left me rotting here all day.” It doesn’t take much effort to get her to want to go somewhere. We might go out for a casual bite to eat, or take a short drive to catch a winter sunset at the beach. Whatever we do tends to work. One of my challenges is not bringing work home (literally and mentally), so I need to clear my head and apply some mindfulness so I can be present for her.
Week 60: We danced to “Mustang Sally” at a restaurant that has live music on the weekends. D’s primary care provider is the lead singer in the band. There was a middle-aged man holding a cocktail, leaning against the railing watching us — his vibe was pure loneliness. I had a flash of a thought: that I hope I don’t wind up like that.
D spots a nurse that we both know. Her husband had a bad stroke (months of rehab), and our friend is very excited to announce, “Look who’s out tonight!” as he slowly trails behind her.
We get a booth together, enjoy a drink and a few laughs. I feel time freeze as I reflect on the magic of the moment, in all its nuance and complexity. Here is D and I making the best of her condition, planets aligning with our friends making the best of his condition.
Our spouses have health conditions that will significantly limit their lifespan. They are time bombs, as are our marriages and lives together; in this way, at this moment, we are kindred spirits.
Our friend talks about taking an Aurora Borealis cruise on Lake Champlain. “No guarantee you’ll see it, but just once, wouldn’t it be so great.” I’m inspired by all the positive energy, and I can feel D recharging her happy cells that had depleted after a couple of my long work days, creating an invisible circuit, feeding off each other. Then we danced.
Week 64: I’ve been thinking of this movie Charly that I saw when I was young. It was based on the book Flowers for Algernon, about a man with an intellectual disability who is given an experimental treatment that makes him a genius. But he discovers that it won’t last, and that he will revert back to his former state, and as a consequence of the treatment, he will die. He isolates himself to die in peace.
D and I have been doing so well for a good few weeks now. It’s been easy to have fun and enjoy each other. She’s been so happy, like she’s on an extended enjoyable vacation. I’m feeding off her joy, despite the dark cloud lingering in the background, for I know it can’t last. The natural course of her disease will see to that. She will digress and deteriorate, just like Charly. I acknowledge that thought and file it away, but it keeps popping up. I want to nurture her happiness today and for however many days to come that might be like these.
Week 68: D is having difficulty with electronics. It’s not entirely new — she hasn’t been able to navigate a load of laundry for a while, for instance — but this is different. She says things like, “That lady on the phone won’t stop bugging me,” referring to various text messages she receives. When I got home from work today, she said, “That news man is in my bedroom, on the other side of the screen, and won’t stop talking about all kinds of stuff. I don’t want him in my house.” Of course, I reminded her where the power button is on the remote, but it wasn’t the operational aspect that was concerning — it was how she was interpreting these situations, animating people who aren’t physically present as if they were. I guess this behavior could just be a part of Alzheimer’s, like so many aspects and details I’ve noticed already that aren’t in the definition or descriptions of the disease.
Within a year, D would have such agitated arguments yelling at “the woman in the mirror” — her own reflection — that I had to take down all the mirrors in our house, and her family and caregivers learned to distract her from mirrors in other people’s homes or public restrooms. I learned this is called Mirrored Self-Misidentification, and is actually relatively rare with various forms of dementia. This type of psychosis was not a good sign for D. I couldn’t imagine or prepare back then for how the psychosis would manifest.
