As my 55-year-old husband lay dying from young-onset dementia in Hospice House, moments of our life together started rapidly running through my mind like a beautiful silent film that seemed so vibrant in the moment. Both my mind and body were at the point of sheer exhaustion, running on adrenaline that was quickly drying up.
After Alan died on the morning of New Year’s Eve, I moved quickly through the funeral preparations, service, and goodbyes to family traveling home. When the dust settled, there was estate business and checking in on my own aging parents, so really no time to sit with grief. I started feeling like I had just walked through a strange art film, shot from bizarre camera angles, as though I might be able to step out of it somehow. The chaos of the last four years just did not seem like “my life,” even though I rationally knew it was.
I also couldn’t reach the beautiful silent film anymore. Having flooded through my mind in Alan’s last moments, these memories were elusive after the fact. A friend, whose mother died of old age dementia, captured this well, explaining that she knew she had good memories of her mother, but they were out of reach, eclipsed by those of the disease stage.
Over these last months, I’ve worked to recover the beautiful silent film – hiking in the woods and traveling abroad. I reconnected with Alan’s spirit briefly while hiking up Coal Bank Pass to Engineer Meadow. Recently, I found myself in a Paris church, lighting a candle at an altar to Saint Antoine de Padoue, said to restore lost things, in hopes of bringing back my own memories. The Paris trip was a priceless gift from a college friend, who offered me her extra room for as long as I wanted it. Alan and I spent many days in Paris when we were college kids backpacking in Europe, so this seemed a way to coax back some better memories.
Walking along a rocky beach, amid seaweed, tidal pools and shells outside the ramparts of Saint Malo in France, I remembered that I first encountered ocean tides with Alan. That reminded me of a friend, whose partner also faced dementia, wondering whether she liked gardening and hiking because she genuinely liked them or because it was something she enjoyed doing with her partner.
Alan and I fell in love as 20-year-olds traveling by train from one adventure to another with a Eurail pass. I used to say that since we did not kill each other after going for days without showers and sleep, we must be meant for each other. My 55-year-old body is no longer up for the extremes of 20-year-old backpacking, but I realized that the allure of exploring the world without a tour guide or set schedule was something Alan taught me to love – and something I genuinely chose to love on my own.
In some ways, the trip helped me reconnect with old memories. Places we explored together conjured up visions that connected me to the beautiful silent film. Still, at times, visions of the physical pain, emotional suffering and anger phases of dementia would violently saturate the screen. Over the weeks, I worked to reconcile both films, recognizing that the Alan in the beautiful silent cinema, not the one in the bizarre art film, is the one who wants me to be happy standing on my own and carrying with me the things we learned together, but also venturing out to create new memories of my own.
Kimberly Younce Schooley has been an attorney, teacher and full-time care partner. She is the vice president of the Durango Dementia Coalition.
