The Elasticity of Memory, Part I

Mon 19 July 2010
By John Mark Schofield in Health
Tagged as: Family

My father says my mother hallucinates, but I don't think "hallucinate" is the right word. It's not as if you're with her and she sees people who aren't there. Instead, later she remembers things -- sometimes very vividly -- that never happened. At first these were visits from people she knew -- her father, her sister, old friends. It was easy for us to tell these things weren't real -- her father has been dead 20 years, her sister hasn't left Denmark in 30 years, and her friends weren't visiting either.

She's come to accept that these things aren't happening -- though she had to call her sister in Denmark before she believed us that Greta wasn't here. Now she remembers things that are harder for her to verify on her own, so she asks us about them. Today she called and asked if I'd had a bunch of friends over last night. I don't live with my parents, and hadn't been there last night, but I did have lunch there yesterday, and their next-door neighbors Daniel and Tatiana came over with their daughter Priscilla to visit for a while. Once I was sure Mom wasn't talking about Priscilla and her parents, I knew this was another dream memory, and told Mom so.

"Well, your Dad says the same thing, so I guess they weren't really here." Later I asked her about the memories. "Today we talked about Daniel and Tatiana and Priscilla coming over yesterday, which did happen, and about a bunch of my friends coming over last night, which didn't happen. Is there any difference between those two memories for you?"

"Oh, yes! They're very different. When your friends come over it's like a Swedish movie. It's just dozens of young girls flitting around in white dresses. They're very nice, and don't cause any problems. They're just always moving around the house. I just assumed they were your friends."

In some ways my mother is in the hardest part of dementia. She's losing her reality, her ability to tell fantasy and imagination from reality, and she's still alert and thoughtful enough to know it's happening. At first this hit her very, very hard. The hardest hit was also one of the most mundane. We were in the doctor's office, and she needed to give a urine sample, and she had gone to the restroom before we left the house, so the medical assistant gave her a dixie cup full of water. My mom gave the empty cup back, and somehow that got transmuted in her mind to her giving a urine sample. And no matter how much my father and I insisted that she hadn't given a sample, she stood firm. It wasn't until all the nurses in the office and the doctor confirmed that she hadn't given a sample that she realized she was wrong. This simple error shook her much more than thinking her dead father was visiting. She could no longer trust the evidence of her eyes and ears and mind.

All of this raises thorny questions about the nature of reality that I don't feel qualified to talk about. Our eyes and ears and other senses are the instruments we use to model the world in our own heads. But our brain is an instrument as well, and when it's not working correctly it doesn't matter how sharp your vision or how sensitive your hearing. We're all using imperfect instruments to perceive our world.

All of this completely terrifies me. Not only because of the obvious impact on my mother, but because I've become aware of my attachment to my own rationality and ability to perceive the world accurately. I'm a student of Buddhism, and I've found the knowledge that all things end to be a comfort as we approach the end of my parents' lives. I've come to accept the inevitability of death -- but this is rubbing my face in the liklihood of my own loss of awareness before death -- and it will take much more meditation before I come to accept that.

My mother grew up in a small farming village in Jutland, in Denmark. It's the kind of place that people in the capital, Copenhagen, make fun of, filled with people the city-dwellers think of as hicks with funny accents. She went from there to an elite boarding school near the capital, and eventually from there to America, where she met my father, earned a Master's Degree, taught in high schools and colleges, and had a son.

She's always been proud of her academic ability, a voracious reader of newspapers and news magazines and books. Lately she's come to terms, at least a lot more, with the fact that she can't trust her own brain or her own perceptions. It no longer seems to shake her so deeply when she finds her memory at odds with reality. She even jokes about it now -- when I offered to take her to the Library she said there's no need.

"The best part of Alzheimer's is that you can read the same book over and over again and not mind." She sometimes gets frustrated -- more so on good days than bad -- when she asks me five times in ten minutes if I'd like steak for dinner (I'm a vegetarian) and realizes how many times she's asked the question. On bad days, though, she doesn't realize -- just asks again and again -- and this actually seems easier for her. Alzheimer's is a disease that may actually get easier for her as it progresses.

I'm very thankful for one thing -- that this doesn't seem to be changing the basic nature of my mother. She's losing her reality, but she's not losing herself. She actually seems to be getting sweeter, more gentle, more loving, and more able to express that love as the disease progresses. Even her fantastical memories are of people she loves coming to visit, or of friendly young people filling the house. At least for now, she's still the mother I love and the mother who loves me. And I'm going to treasure that for as long as it lasts.