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.
