Patti Davis is the author, most recently, of the novel “The Wrong Side of Night” and is the daughter of Ronald and Nancy Reagan.
In 2011, I started an Alzheimer’s support group for caregivers called Beyond Alzheimer’s, and ran it for six years. The program has now been licensed by the Cleveland Clinic in Las Vegas and the Geisinger Medical Center in Danville, Pa. Over those six years, I became achingly familiar with the layers of heartbreak, difficulty, guilt and conflict that are born when the disease chooses its next victim. Some of the most painful stories come about when a person is diagnosed with “early-onset” Alzheimer’s or any other version of dementia. This means that dementia has started to claim someone, to steal the person away, before age 65. In 2011, our support group had only a few people whose spouses were diagnosed with early-onset dementia. By 2017, we had a lot.
One evening, a woman who had been coming for more than a year looked particularly distraught. I called on her first, thinking that her husband, who had been diagnosed with Lewy body dementia in his early 60s, had probably had a steep decline. Early-onset dementia moves quickly, and Lewy body dementia is particularly brutal. She took a deep breath and said, “I hope it’s okay to talk about this,” and then went on to confide that, with all the ways the disease had eroded her husband, both mentally and physically, she hadn’t felt any desire for him, any attraction or physical longing, for nearly a year. She said it was such a difficult thing to admit that she’d kept quiet about it.
Recently, there has been a great deal of attention in the media and online focused on B. Smith, the restaurateur and lifestyle expert who six years ago was diagnosed with Alzheimer’s in her early 60s, and her husband, Dan Gasby. He was honest enough to put out publicly that he had fallen in love with a woman, Alex Lerner, while still caring for his wife, and that Lerner often stays with them at their house in East Hampton, N.Y., and participates in caregiving duties.
The backlash against Gasby was quick, and some of it has been fierce, with people berating him for his new relationship and bringing Lerner into the couple’s home. I doubt many of those people have had experience with Alzheimer’s.
Imagine your partner, the person you have loved and been in love with for years, slipping backward through time until their capacity for comprehending and communicating is on a par with a small child’s. Imagine that as their mental faculties diminish, so do their physical abilities. They can’t bathe or dress themselves, they can’t eat on their own, they need help in the bathroom. One of the many things that Alzheimer’s steals is the romantic part of a relationship, the “in-love” part. You still love that person, your soul is still tied to theirs, but the man or woman you once made love to, held through the night, reached for at dawn, cried with and laughed with is no longer there. The loneliness is vast and deep.
One of the caregivers’ biggest challenges is to understand and accept that their lives can still have joy and fulfillment despite the grief and the loss that is inescapable. Gasby has said that he’s a better caregiver to his wife now because he’s happy. There is so much truth in that. People with Alzheimer’s pick up on every emotion — more so because they can’t reason or analyze, so nothing gets in the way of what they absorb emotionally. The best thing you can do as a caregiver for someone with dementia is show up in a joyful state.
Alzheimer’s is a cruel thief. It steals the past as well as the future. I watched my father’s eyes grow more and more distant as the disease progressed until he was somewhere so far away, I could only pray that he was content there. We need people such as Dan Gasby to show us that there can still be life, and joy, and promise in what appears to be a bleak, unforgiving landscape.
There is no cure for Alzheimer’s at this point, but there are ways to stand up to its piracy. Opening one’s heart to new love in the midst of grief, saying to the disease, You will not steal my life, too, is a light on the path of a very dark journey.