I’m silently counting down from a hundred by intervals of seven—100, 93, 86, 79—when my boyfriend asks me what I’m thinking. “I don’t know, I’m just thinking. God!”
I suppose I could have told him the truth. That I was self-administering a cognition test I found on the internet. That the faraway look in my eyes belied my depth of thought. That I was merely seeking the sweet relief of two, the final number in a twisted game of “Do I Have Dementia?” But they say mystery keeps the love alive—so I was rude to him instead.
Caring for someone with dementia has made me question my memory—if it’s normal, whether I’m losing it—in ways that aren’t always healthy. When I’m not running math drills, for instance, I might be quizzing myself on mundane facts from childhood:
What was the name of my fourth-grade teacher?
What was my phone number in middle school?
What street did my first boyfriend live on?
I don’t know the answers to any of these questions. Should I? Would you?
It’s important to have perspective: I never forget an appointment or miss a deadline. I pay my bills with ease. And, yes, I can count backwards from a hundred by intervals of seven. Do I really think I have dementia? Of course not.
Now.
What I’m looking for are signs. If dementia is an electrical fire in the brain, is my failure to remember what happened on last week’s Only Murders in the Building the subtle burning smell that everyone ignores until it’s too late?
I first noticed something was off with my dad when I called him for Christmas (or was it Thanksgiving?) in 2017. He and his then wife had just moved from Staten Island to Florida, and he kept repeating to me that I was welcome to visit. “He must have had one too many celebratory drinks,” I told myself. But, deep down, I knew something was wrong. There was a strangeness to his repetition, a lack of awareness. I noticed it again on February 19, 2018 (his 64th birthday) and this time told my boyfriend. “I’m honestly not even worried about him,” I insisted. “I’m just worried it’s genetic.”
For most of my life, my dad and I weren’t close. He and my mom divorced around the time of my birth and we became the father-daughter equivalent of a Catholic who only goes to church on Easter. We’d talk on holidays, send the occasional card, and keep things polite. By the time my dad retired to Florida, I hadn’t seen him in three years despite living about an hour away from him, in Brooklyn.
Now, I see my dad all the time. I know how he takes his coffee (with half-and-half and cocoa) and that he’s fascinated by shipwrecks. I know when he’s feeling overwhelmed or anxious, and how to help him calm down. I know that when I told my boyfriend I didn’t care, I was lying. I cared so much.
In August 2018, less than a year after I first suspected my father had a problem, his wife of twenty years moved out and filed for divorce. My brother and I flew down to Florida to assess the situation, and in November—after a second trip, an MRI, a neuropsych evaluation, and a meeting with a divorce attorney—we brought our father back to New York.
I’m not sure how much of that whirlwind experience my dad remembers—the vegan hot dogs we ate for dinner; the Jennifer Garner movie Peppermint we saw in theaters; the crack-of-dawn cab ride we took to the airport. But I remember all of it, and I will until the day I die. Or so I hope.
A friend recently texted me a Facebook Memory from 2009. “Can’t wait for Britney Spears at MSG tonight with Patti and Christina,” it read. I am the Patti to whom she was referring—but if you had asked me prior to that text whether I’d ever seen Britney in concert, I’d have responded confidently, “No.” I remember seeing Miley Cyrus and Madonna. I remember seeing Radiohead and Beck. I even remember seeing Gloria Estefan, my first concert ever, when I was maybe eight years old. Why was there a Britney-shaped hole in my memory?
I got to thinking about a book I read earlier this year, Remember: The Science of Memory and the Art of Forgetting, by neuroscientist Lisa Genova (author of Still Alice). One of the book’s key takeaways is that forming a memory requires our active participation, whether that memory is “semantic,” i.e. rooted in fact (state capitals, dog breeds, etc.) or “episodic,” i.e. rooted in experience (a 21st birthday party, a wedding). “Your memory isn’t a video camera, recording a constant stream of every sight and sound you’re exposed to,” Geneva writes. “You can only capture and retain what you pay attention to.”
Attention alone isn’t even enough. For a memory to last, it needs to be regularly retrieved (“remember when…” / “my password is…”). That retrieval is what builds neural connections and gives a memory its strength.
Thinking in those terms, maybe my failure to recall the Britney concert had less to do with my doomed mind and more to do with the fact that—even though I’m sure I had fun at the show—I wasn’t a big enough Britney fan to tell people for years to come about the time I saw her perform at Madison Square Garden.
Our brains aren’t built to hang onto everything that happens in our lives; they cling instead to what we find meaningful. In hindsight, I wish the Britney concert cleared that bar, that I understood just how special it was to be 26, living in New York City, and rolling up with two of my best friends to see a pop icon at MSG. But I suppose at the time it was just another day in August.
One thing about dementia that often takes new caregivers by surprise is how strong a person’s long-term memory can be even as that person struggles to recall what they ate for lunch an hour ago. The disease typically starts by attacking the hippocampus, the place in the brain where fresh memories are formed, and doesn’t get around to destroying more established neural connections until later on in its progression.
As a result, there’s an intimacy to spending time with a person who has dementia. Or at least that’s how I see it. When someone is largely stripped of their ability to carry a conversation that takes place in the present, they’re left to tell and retell stories from their past. Those stories aren’t always the most profound on the surface—my dad tells one about getting lost in a cave while scuba diving. But they’re deeply held and, by their very existence, meaningful.
What memories would I pull from the vault if I were to get dementia? Would I laugh about the time I, a lifelong vegetarian, ate risotto in Florence, Italy, not knowing that risotto is usually made with chicken stock? Would I brag about how I once came in first place at a My So-Called Life trivia night? Or would I gripe about how I always knew I’d get dementia? “I used to count backwards from a hundred and everything!”
According to Remember, the memories we keep for the long haul tend to reflect and reinforce our personal narratives. If we think we’re smart, we’ll remember instances in which we came across as smart. If we think we’re mean, we’ll remember instances in which we came across as mean.
“My friend Pat has the most positive attitude of anyone I know,” Geneva writes. “I would bet that Pat’s autobiographical memory is populated with laughs, appreciation, and awe.” Geneva’s great aunt Aggie, on the other hand, complained to anyone who would listen. “Her life story—the meaningful memories she retained of what happened in her life—was a tale of woe…”
Who among us wants to be Aunt Aggie?
There’s a TikTok trend that, depending on my mood, can get me pretty choked up. It’s an iteration of the “core memory” meme that came out of Pixar’s Inside Out. According to the movie, five important life events, or “core memories,” define our personalities (an oversimplified idea that feels true but isn’t).
In its early days, the meme was mostly self-deprecating. Twitter users would post embarrassing or cringe moments and label them as core. But the latest iteration, which gained traction on TikTok earlier this year, is more sentimental: Creators edit simple, happy moments using the app’s echo effect, and set the videos to Dorian Marko's longing piano track "Cornfield Chase.” The audio manipulation evokes a sense of wistfulness and nostalgia. “What a core memory sounds like,” the caption or overlay will often read.
The “core memory” tag has been viewed billions of times on TikTok. But we can’t possibly care that much about two strangers jumping into a lake or a baby we don’t know playing with a dog. My guess is the videos are popular because they remind us that life is fleeting—we ought to make the most of it.
Some episodic memories (the death of a parent, the birth of a child) are so impactful you can’t help but remember them, even if that memory gets distorted over time, as all memories do. And some semantic memories (the first president of the United States, “2x2=4”) are so deeply instilled that you can fire them off without so much as thinking. But other memories, the in-between ones, have meaning only because we gave it to them.
I’m a worrier and always have been. How has that directed (or misdirected) my attention over the years? How has it shaped my memory? I don’t know, nor could I change the past if I tried. The best I can do now is understand how memory works and set more of the good times to "Cornfield Chase.” I know that’s what my dad would want.
What a way to start— as I’m just coming off a visit with my own parents, this is giving me a lot of food for thought. I have a lot of feelings I can’t quite articulate yet, but just wanted to tell you I’m so looking forward to reading more. Proud of you! Thanks for this bit of thoughtfulness in my inbox.
Love this, so interesting to think about how our memories work.