When I was a child, my dad took me to see 2001: A Space Odyssey. The scene where HAL was deconstructed, his voice becoming deeper and slower, frightened me to tears, and I begged to leave. My dad made me stay, but he was angry with me for causing a scene.
I still get freaked out by slowed-down voices. But that wasn’t the horror of what happened to HAL.
My paternal grandfather died when I was 13 years old.
I don’t remember what he was like, not really. He hadn’t been present in years. My memories of him consist of a few moments from summers when I was 7 or 8—he taught me how to make a bed with hospital corners, and how to spit watermelon seeds—and then odd sorts of discipline and weird speeches at Christmas about the dangers of tree lights. One night, in a house my grandparents rented during the summers, he woke everyone up by rapping incessantly on an interior door. He thought he was arriving at a party he attended in the 1950s. My grandmother was weeping, which wasn’t a thing she did, but he kept insisting he needed to get to the party.
Sometimes, when he was petting our cat, you’d get a glimpse of him. Sometimes you could ask him a question and he’d look at you, and you knew there was a part of him still in there.
He died young. 68. Physically, he was relatively fit until the end. When my father turned 68, 69, 70 without experiencing the same symptoms, we were all relieved. Genetics, it seems, isn’t everything, and besides, my paternal grandmother lived to 86 with her wits intact. Her sister lived to 90.
My father is now 80 years old. And in November of 2018, he was diagnosed with degenerative dementia.
Strange things have an impact on you when you’re a kid. Random bits of television, for example. I remember an episode of Bewitched where Samantha, trying to reassure Darrin that it didn’t matter that he couldn’t afford to take them on a vacation to Italy, said she could arrange for them to have the memories of a vacation to Italy. He said it wasn’t the same thing.
And I realized, as I watched Elizabeth Montgomery and her cute, twitchy nose, that he was wrong: it’s exactly the same thing.
Because none of us live in the moment. We can’t hold the moment. The only solid thing we have is the past, and the past is made up of memories. Darrin was a fool.
There’s no such thing as now.
When you get older, some cognitive changes are expected. You’ll lose your car keys more often, for sure; that starts happening at about 35. You’ll have trouble remembering when you saw certain movies, or who you saw them with. Time will corrupt older information, leaving only the most vivid—or traumatic—memories. You’ll get into the habit of writing things down. It’ll take you longer to figure out how to use the latest gadgets. None of these things, in and of themselves, is alarming or unusual.
My father was the caretaker of the household. He paid the bills, called the repair people, made sure the car had enough gas. This wasn’t to say he was perfect at it, but that was his role, his nod to the gender roles he was raised with.
Earlier this year, I took over managing their money. This was an easy thing for me to volunteer. People get so emotional over money—me, too—but it’s a concrete thing subject to the rigors of math. It’s necessary, and it’s helpful, and I can do it without being constantly reminded that my father is disappearing.
No. Not disappearing. Fragmenting.
My dad always wanted to be a stereotypical dad. Fundamentally, though, he didn’t know how: broad social expectations were easy, but the subtleties escaped him. I wore dresses and pigtails and watched hockey on TV, but my brother was the one he took to games. The shared family obsessions were all things NASA, anything even tangentially resembling science fiction, and variety shows like Carol Burnett. When my mother went to law school he learned to cook, and was the primary household chef until a few years ago.
I was the easier child for him to have, I think. Beyond stereotypical things like long hair and dresses, his notions of femininity were malleable. Moreover, he and I were temperamentally similar. This should have made us fight like cats and dogs when I was a teenager, but in fact I wasn’t particularly rebellious with either of my parents. With my dad, I shared music as a hobby, and we’d spend nearly every weekend perusing record stores. (In different sections; he stopped listening to pop music in the early 1970s. His record collection was Joan Baez, the Doors, and Sibelius.) When I moved into my first apartment, he helped me buy shelves suitable for my audio equipment. Those shelves are in my basement now, holding old textbooks.
Not everything I learned from him was good. But these days, the good things are what I hang on to. The good things are what I choose to carry.
Memories can be a choice, sometimes.
I wrote “Overlay” last October, when things were just beginning to get bad.
At the time, I was thinking about how poorly technology serves people as we age. Innovations that make my life easier, or that improve accessibility for people who are physically disabled in major and minor ways, don’t work well for people undergoing cognitive degeneration. When you’re losing your ability to learn new things, you don’t need something easier to use, you need something familiar.
Siri’s a good example. For various reasons I have a lot of trouble reading maps, or even following turn-by-turn directions. With Siri, I was suddenly able to go to unfamiliar places without the attendant worry of getting lost or being late. Spoken directions solved a lifelong problem for me in a way that’s genuinely changed my life.
But my parents? Neither of them could get the hang of it. If they’re in the car while I’m using it, they remark on how wonderful it is, but they were never able to get it to work themselves. Connecting the result with the steps required to make it happen was just not possible for them. What they needed was a device that could silently use a GPS to figure out where they were, and then hand them a paper map. They needed familiar.
I thought of this while I wrote “Overlay.” I thought of my grandfather, and that long-ago party he kept attending, how his memory held on to faces and conversations and jokes that were nearly 30 years old when he didn’t recognize his wife and child. If you can’t bring him back–if he’s trapped there, in the past–why not give him a past he can enjoy? Why not build him a reality, when this one is lost to him?
One of my crit partners pointed out there’s a lurking horror in this scenario. It’s a lie, and it’s an absolute capitulation to fate, giving up before the final curtain. I don’t address the ethical issues in the story—it’s only 2500 words—but if the real world ever managed this, I’d expect it to work something like DNR orders: you’d have to opt in while you were still competent to do so.
From what I’ve learned about dementia, though, “Overlay” is not an especially likely scenario. Dementia’s a symptom of a number of different conditions, and they all erode the brain in different ways. My grandfather was lucky, enjoying that old party where he flirted and made jokes. Others are not so blessed. And it’s not at all clear there’d be any kind of structure for a VR like that to tap into, even if such a thing were possible with a healthy brain.
But I wrote the story to be optimistic: the gift of a wife to the husband who survived her, the kindness of a son to his dying father.
I wrote this story for my parents. For my dad.
It’s not enough. How could it be?
In the weeks after my dad was diagnosed, it was like he let go of something, of the pretense that everything was normal. At this point, the good days are few and far between. On good days, he still makes Dad jokes, and asks about my daughter. On bad days his thoughts come in disjointed waves and loosely linked topics, a puzzle where he recognizes the pieces but not how they fit together.
It’s HAL being undone, chip by chip.
He doesn’t see it at all.
I’m on the fence as to whether or not that’s a blessing. He certainly knows when people get frustrated with him, when he’s not getting his point across. From his perspective, we’re all responding strangely, and he doesn’t know why. On the blessing side, forgetting his point mid-sentence sometimes means leaving behind sadness or regret. His mood has remained primarily positive, which given the current stressors is remarkable in and of itself.
But I don’t know what he’s feeling, not really. I can’t get into his head with him and see the world refracted through his shattered window. I can sit with him and listen to him and talk to him and hope he understands we’re still here, no matter how confusing we’ve become.
I don’t want him to be alone. I don’t want him to be afraid.
I have no more control than he does.
I write fiction in part because it puts me in control. I build the universe. I build the characters. I choose the morality and consequences, the good and bad. I decide who wins and who loses. I can work miracles if I choose. It’s the antithesis of sitting and watching and waiting for something I can’t change.
I’ve been a writer for fifty years. And I don’t know how to write about this at all.
Daisy, Daisy, give me your answer do
I’m half-crazy all for the love of you
It won’t be a stylish marriage
I can’t afford a carriage
But you’ll look sweet on the seat of a bicycle built for two
2 thoughts on “I Can’t Do That, Dave”
Oh Liz – I am sorry to see your Dad’s diagnosis. It is so hard to lose a parent in general and dementia adds a lot of twists and turns to the journey. I have read that joining people where they are rather than fighting to bring them “here” has reduced stress for a lot of families. I will have to figure out how to find this “Overlay” piece – I definitely enjoyed your trilogy.
Thank you, Gail. We’re all rolling with it as best we can.
I edited the post to link to the story, which feels odd and self-serving given the circumstances. But I did write it for my dad. The charter was to write about how technology makes for better worlds, and this was the first thing I thought of. Here’s the link: