The third time my husband complained about not being able to refill his subway card, I began to worry that the vending machine wasn’t the problem. When I accompanied him the next morning, I knew it wasn’t.
My jaw dropped as I watched him squint and poke blindly at the screen, misreading prompts and misunderstanding the payment option buttons. Once he finally selected a dollar amount and tried to pay, he needed my help to insert his transit debit card into the correct slot. When he was prompted to enter his PIN, he typed in our ZIP code and got an error pop-up.
“See?” he said. “It doesn’t work!”
I nodded, finished the transaction and watched him pass through the turnstiles to work. Back on the street, I replayed the weird disconnects he had been having over the past year: the visual problems he blamed on dyslexia, the forgetfulness I attributed to undiagnosed A.D.H.D., all the odd lapses at stores, banks and in our own home that he claimed were the fault of other people, gadgets and glitches. They had all seemed like random one-offs until now.
Seven neurology exams, two M.R.I.s and one heartbreaking neuropsychology test later, my husband, at 59, learned that he had Alzheimer’s, a rare early-onset subtype called posterior cortical atrophy. This means the plaque buildup in his brain started its dirty work with his visual processing before taking aim at his short-term and working memory.
By the last appointment in a yearlong series of humiliations for him and gut punches for me, we discovered that he could no longer read properly, sign his name on a line, remember the date or often why we were seeing a neurologist in the first place. The doctors were amazed that he was still working at a city agency and commuting. I shared their view about working (and it turned out that most of his office mates had been covering for him), but not about commuting.
Like many native Brooklynites, he had been riding the subway his entire life — the system is baked into his long-term memory. He not only knew the lines and their quirky permutations but also where to stand on a platform so the doors of an incoming train would open right in front of us. I constantly ribbed him for being a train nerd. It was no accident that our son’s first toys were model subway cars.
Within days of my husband’s diagnosis, when he was gently forced to retire from his job, he decided he would use his free time to take the subway around the city to visit museums, walk around favorite neighborhoods and catch films. I was working and our son was in high school, so his options were to travel alone or with a companion I would hire.
He shot down the latter idea immediately. Though he acknowledged his diagnosis, he denied that he was exhibiting any big symptoms yet. I knew better than to point out that he had just been let go from his job because he couldn’t read or type. Believing Alzheimer’s was his future and not his present was his lifeline.
I had to hold onto it, too. The idea of letting him explore alone gave me pause and it raised full-on alarm bells with members of our family who thought a hard “no” was the only answer. However, it was a risk I was willing to take. Card machines aside, he still knew the subway system perfectly, and in my new role as caregiver I didn’t want to curtail abilities before they departed on their own. Let the disease be the thief, not me.
But that didn’t mean I wasn’t going to install guardrails on his travels. I had learned from parenting circles about apps and trackers used to keep tabs on children as they got more independent. Upon joining several online Alzheimer’s support groups, I learned that my fellow caregivers used the same technology to track their loved ones as they became less independent. I hadn’t tracked our son, who wouldn’t have minded if I had, but I knew I had to track my husband, who would mind.
This meant setting up a surveillance system without him knowing. Under cover of night, I downloaded a tracking app onto his phone, buried it in a utilities folder and turned off the notifications so he wouldn’t see it. Next, I hid a tracking tag in an obscure pocket in the backpack he took everywhere.
I couldn’t hide a tag I wanted to put on his key chain, though, so I bought them for the whole family and put them on everyone’s key chains because “we all lose keys.” When I did a demo to show my husband and son how they worked, my husband didn’t notice that his tag was connected to my phone. Lastly, I put my credit card in his phone wallet so he could tap to pay and avoid using a subway card altogether.
With my system in place, I wondered if I would feel guilty spying on my husband. But as I began tracking him, following his dot on a digital map, I felt connection. When his dot appeared at a favorite record store, I pictured him flipping through LPs. When his dot paused on Central Park’s Great Lawn, I imagined joining him on the grass. If he knew I was watching, he would feel like I’d betrayed him. But I felt like I had given him, and us, an extension on the routines that had held us together for more than 20 years.
For the next year and a half, despite continued decline in vision, memory and word recall, my husband navigated nearly perfectly on trains and walks. I physically traveled with him at least once a week to verify my screen observations with my own eyes. It was a marvel to see that the same guy who could no longer operate the toaster or see a fork next to his dinner plate could still manage a two-train ride to Citi Field without missing a beat.
The biggest sign of his condition for me was the growing silence. We used to talk up a storm on our subway rides together, comparing notes on David Mitchell novels, laughing about the blizzard that resulted in me taking the subway to our wedding ceremony. Now he said little and stared blankly. It’s awful missing someone while they’re standing right there.
Alzheimer’s moves gradually, then suddenly. A skill that’s there one day, even one hour, is gone the next without warning or evidence it was ever there. Sometimes it will come back for a visit, but that can be months later and it’s always fleeting. Knowing when to step in and tell a loved one with the disease that they can no longer do something because it’s too risky is a game of chance we caregivers hate to play.
Most of the members of my online support groups live in suburbs or rural areas and teeter back and forth on knowing exactly the right moment to take their loved one’s car keys and driver’s license away. For me, it’s knowing when to take away my husband’s subway card.
That day is coming soon. In recent months, my husband’s tracking dot has shown him switching train lines with no clear logic behind the transfers. His trip summaries zigzag across neighborhoods in Brooklyn and Manhattan. Sometimes I can see that he has taken the D train straight to midtown and back without ever surfacing, or that he takes a quick hop from an R to an F to a neighborhood where we used to live, and he’ll just hover on a street corner for 20 minutes or so before coming home.
Sometimes I’ll be just about to leave work to go get him when his dot begins to move again, relieving me of worry for that moment, but not the dread that is more steadily telling me it’s time.
He comes home from these trips to nowhere without showing any signs of having felt lost or confused. When I ask him where he’s been, he blurts out a location I know he didn’t reach. I smile at him, say “That’s great,” and feel competing tugs of fear, anger, loss and agony.
The trackers I have loved so much for telling me where my husband was on a map are now better at revealing the expanding distance between who he was and where he is headed. He won’t need a subway card to get there.
Caroline Bailey is an advertising writer who lives in Brooklyn.
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