Race to recreate a beloved trip, before dementia takes it all away
Growing up, my father, who has only left the country a few times, told me about the trip to Europe he took with his parents when he was 14, in 1966. He told me how much Nonie loved the immaculate Swiss streets and flower-filled window boxes; the fireplace in the house on the hill outside Lugano where his father was born, with clever alcoves on either side for drying clothes or warming bread; the palpable poverty of the house in Pozzuoli, a town just outside Naples, where Nonie’s aunt lined the walls with newspaper to add insulation. Every now and then, my father would pull out the projector and show me his Kodachrome slides.
For years as an adult, I told him that he and I should repeat the trip together – or at least a short version where we went to Switzerland and Italy, Lugano and Naples, so he could show me where his family came from. But with his Alzheimer’s disease worsening, that proposal had taken on new meaning. I hoped that revisiting the past would help him live a better life in the present. A few years ago I read about a palliative treatment for people with memory disorders called reminiscence therapy. The therapy involves recalling the participants’ strongest memories: the memories formed between the ages of 10 and 30, during the so-called memory bump, when personal and generational identities are taking shape. Reminiscence therapy can take many forms: group therapy, individual sessions with a caregiver, collaborating on a book sharing the patient’s story, or simply a conversation between friends. But the goal is the same: to comfort, involve, increase connection – and strengthen the bond between patient and healthcare provider.
One of the most compelling forms of reminiscence therapy is a place that Town Squarea day care center for adults with dementia. I visited shortly after it opened in 2018. The daycare consisted of a artificial village designed by the San Diego Opera to look like a 1950s town. It had a diner, beauty salon, pet shop, movie theater, gas station and city hall. By recreating the period when participants had their fondest memories, Town Square hoped to improve their quality of life. The decor provided plenty of conversation material. For example, there was a portrait of Elvis hanging in the living room, and when a woman saw it, she talked about her teenage years and teleported into her past. “There is no time machine except man,” writes Georgi Gospodinov in his novel “Time Shelter,” about a psychiatrist who develops memory clinics that simulate past eras. I was initially skeptical about the undertaking; housing people in a double-enclosed set where old people played around the clock sounded grotesque. But what I saw there – spontaneous memories in a cheerful environment – was perhaps the only positive image of Alzheimer’s I have ever seen.
I wanted this for my father, wanted to give him a sense of joy now that he had closed his shop, the place that was his world. While he wouldn’t submit to an adult day care facility, perhaps resuming his 1966 trip would be like reclaiming a tableau of his youth. To be honest, I also wanted to replace memories of the last few terrible years with new ones, for me as much as for him. I had made countless phone calls to his doctors, banks, and lawyers over the past sixteen months to negotiate reductions in the insurmountable interest. When he unwittingly undermined my efforts, made random small payments, or denied that he had an illness, I snapped, and he would never hold it against me. No. He would promise to do better. Sometimes he would yell back at me that I was a whiner and a “pencilneck” (a demanding and officious know-it-all, I suppose). But even when I pushed him so hard that he hissed at me to leave his house, I knew that he loved me unconditionally and would apologize quickly. He trusted me, even when I didn’t trust myself. For this, the burden of my being, he demanded nothing in return, harbored no expectations. He never had a fight afterward, and not just because of his illness. He held no grudges as I vaguely did about the mistakes he made as his brain demasked, even though I knew none of it was his fault. Still: why hadn’t he planned for that? Hadn’t he seen his own mother suffer and struggled to support her?