Last week’s post was a bit like school. I am sorry about that, but in the name of service, it had to be done. On the upside, that means we’re due for recess, a post featuring fun and questionable judgment.
When I recount the many things we got wrong on our Alzheimer’s journey, I’d have to include the rickshaw. It was also, however, my most entertaining mistake by far. The rickshaw situation started in the late summer of 2017, when I saw a Facebook post about a man in England who had rigged up a passenger bike so he could give rides to residents of a care home.
The look of joy on the passengers’ faces, as they experienced moving through the landscape with the wind in their faces, was beautiful. I played and replayed the video, remembering how Nina lit up when my sister Beatie took her on the gondola at the Oakland zoo; how she marveled at the view and the change of perspective. It reminded me of how much she had enjoyed riding chairlifts, talking with friends while gliding through the scenery.
The quest to recapture freedom
The thing that made me most sad about moving Nina into a facility was how much her world had shrunk. That meant socially, for sure, but also in a sensory way. Even when she’d still been living at home, it had been ages since she’d felt the force of being propelled by momentum, and the wind in her face blowing through her hair. Wouldn’t it be great to give her back a little bit of that feeling?
Based on her history, I knew Nina would be game for this new activity. She had learned to ski as an adult to keep up with Buck after they were married, and despite some major injuries—shattered femur, broke pelvis, cracked ribs to name a few— always got back on that horse. She had learned to windsurf in her fifties, and was the first to fill a backpack to go on a hike with the grandchildren. Just that summer, we’d strapped her into a special beach wheelchair and hauled her—roped up to me, running sled-dog-style—over bumpy terrain to reach a favorite dock. She had laughed uncontrollably. I wanted to hear that again, wanted her to feel that freedom again.
I decided on the spot that the rickshaw conveyance from Facebook was the solution. We could take her for rides when we brought her home to Squaw Valley for visits and retrace what had been her daily walk to the post office. It was going to be miraculous. She was going to love it.
First, we find the rig. Then, she rides.
As the long-distance sibling, constant guilt at my inability to help often trumped rationality. On my computer in New Hampshire, I tracked down a two-seater rig with power assist from River City Rickshaws in Sacramento, where “pedi cabs” are a thing in the downtown area. I paid twice the price of my first car (totally worth it) and enlisted my nephew (who had never driven in the city) to pick it up in my brother’s van, all in time for my sister Anne to bring Nina home for a visit over Labor Day.
I couldn’t be there for the big reveal, but I followed along through pictures. Nina kept a brave face and a smile as she was loaded up and into the rickshaw, which was quite high off the ground and not ideal for the mobility challenged. My sister Anne, who loves a challenge—the roguer the better—eased it down the hill and then pedaled it furiously, speeding along the bike path while Nina smiled and gripped the front bar for some sense of security. (Thanks to Jean Hagan for the expert drive-by video and commentary.) She was definitely smiling, and I saw the spark of adventure in her eyes; but I also saw something else—sheer terror.
The Freedom/Security Trade-off
Previously that summer, when Anne had sprung Nina for one final east coast Pilgrimage (an escapade we’ll revisit here soon) we noticed Nina had developed a fear of stepping over thresholds. That was everything from getting into a bathtub, to going down a single step, to going out a door if it involved any elevation change. It seemed like she was uncertain of where her body was in space. I’ve heard that cautious gait called the “Alzheimer’s walk,” but I hadn’t noticed it because in assisted living and memory care facilities all of those obstacles are removed. In the outside world, they now presented an unwelcome challenge.
Even though part of her thrilled at the familiar scenery whizzing by, more of her stiffened with fear. Clearly, the freedom and release I had envisioned came at the expense of her sense of security.
The neighbor's kids, on the other hand, were thrilled by the rickshaw, and ran it ragged, so it wasn’t a complete waste. It now lives in a gated community where it travels to and from the pickle ball courts. I still think the rickshaw was a solid idea, but the timing was off. As with so many other things, be they activities, technology or just conversations, we’d missed the window. We might have missed it by months or merely weeks, but there was no going back.
A global rickshaw network to the rescue
As it turned out, I would get my rickshaw experience. A couple years ago I saw an ad in our local news about a Denmark-based program called Cycling Without Age that was starting a chapter in our town. The program uses Trishaws, a similar rig to what I’d seen online (though much more accessible than the rickshaw), and enlists volunteer pilots. I signed right up for the program, which offers free rides to anybody with mobility challenges who wants to get out more. By then Nina had passed away and though I’d missed my opportunity to give this experience to her, it felt good to provide it for others.
All the good things I’d imagined might come from being outdoors and getting wind in your face are indeed well-documented health and wellness benefits on the CWA site. These benefits go both ways, from pilot to passenger, with the huge bonus of an intergenerational social exchange. The program has more than 3000 chapters running in 39 countries so there just might be one near you. If you have an interested pilot or passenger, check it out. And if you have a half hour to get your heartstings pulled, check out The Grey Escape.
Up Next Week:
We’re backtracking a bit to help set the scene. Losing the Mothership is not an entirely chronological trip, but it is anchored in a timeline. Every family’s Alzheimer’s journey is different. Many, like ours, progress slowly then escalate suddenly with a definitive episode. Next week, we go right there.