Living in Somerville, Massachusetts, one of the densest cities in the United States, I’ve been spared somewhat from the difficulties of my Alzheimer’s cohorts are experiencing. I gave up my driving license in the fall of 2016, but I can still get around on my bike, or on foot, to any of three supermarkets, each of which is within a 20-minute walk from my house. Of course, the weight of my cargo has to be very limited. Even if I had a milk crate on the back of my bike, the amount of my groceries would be limited. Instead, Paula and I share the grocery shopping at the Somerville Market Basket, where prices are a good deal lower than the other supermarkets.
Last week, I interviewed my cohorts Mike Belleville and Jane Callahan. The three of us were each diagnosed roughly at the same time, in 2015. Mike’s diagnosis was changed to Lewy bodies disorder, another form of dementia. And Jane went through a similar process, in which her diagnosis was changed to posterior cortical atrophy, a form of dementia that affects visual processing.
I will revisit this topic later, but first I wanted to hear from Mike about his experiences with both Uber and “The Ride.” The service is operated by the MBTA at the public’s expense, in accordance with the 1991 Americans With Disabilities. As the MBTA states, “Under the ADA, paratransit functions as a safety net. It is not intended to be a comprehensive system of transportation, and it’s different from medical or human services.”
When I asked Mike what he most missed about driving, he quickly replied, “Having the independence to go whenever I want to go.” At the time of this interview, Mike’s father was in the hospital, but Mike had no practical way to visit him. Mike likes to go fishing with his friends, but these days he has depend on the availability of his friends to drive him.
Mike uses Uber, but is somewhat wary of the service. “Is this the right car?’ he said with a chuckle. “If I am in Boston, it can be confusing. You know, there are so many cars.” Mike added, “The app has changed.” And when people with dementia have to adapt to a novel situation, it can be challenging.
Mike uses the Ride to get to his senior center in Douglas, in Worcester County. He appreciates having access to The Ride, but the system has it limits. As Mike put it, “If I wanted to go to my local senior center, it’s not like I could call [The Ride] at 8 a.m. in the morning and they would bring me there. And if I’d say, ‘OK, I’m coming back at four o’clock, they would say, ‘Oh, no, you have to go back at 2 p.m.’ “You’re tied to whatever the schedule is.”
Jane’s problems may be more challenging, because of the nature of posterior cortical atrophy. It’s not a standard feature of Alzheimer’s. I wasn’t at the State House that day, but the conditions sounded awful, for Jane, in particular. The State House is an ancient building, and trying to find your way to the right hearing room on your own can be challenging. And you don’t have to have dementia to get lost within this ancient edifice.
But, according to Jane, the signage met her needs. What she wants is the freedom to be spontaneous. As Jane commented, “There is still a loss of freedom. Your loss of spontaneity is not valued. You can’t just say, I want to go to the museum. And you have to be very specific. ‘Am I going be to standing out in the rain?’ It’s the same way with Uber. Sometimes the drivers are inexperienced, and they don’t know the area. And sometimes they don’t.” In what sounds like a GPS glitch, the Uber driver ended up in the Boston neighborhood of West Roxbury, about as far you can travel and still be in Boston. That’s one of the drawbacks of GPS. The technology is not infallible. I learned that in Washington, D.C., a few years ago. But that’s another story.