Blog Posts

The Love of My Life

I am inaugurating my new blog for Silver Century ten years to the month since the accident that catapulted my husband into dementia at 2 a.m. on July 22, 2004. Ten years! Sometimes it feels like yesterday, sometimes like a lifetime ago, that Scott fell nine feet from a sleeping loft to the distant, hardwood floor, suffering the traumatic brain injury that brought to an abrupt end our equal marriage. In that moment, my partner, the love of my life, became permanently disabled, and I became his caregiver.

In 2008 Farrar, Straus & Giroux published To Love What Is: a Marriage Transformed, my memoir about Scott’s accident and its aftermath, which tells, as the book’s title suggests, how we were able to adapt to our changed circumstances and create satisfying lives. But dementia is a degenerative (and eventually fatal) disease, and Scott’s capacities are far more limited today than they were when the book was published. Back then, I cared for him myself, with only a few hours of help on weekdays while I wrote; now, he needs skilled home health aides 24/7. Then, despite severe cognitive impairment and complete loss of short-term memory, he was able to converse, read, write, draw (he had been an artist) and enjoy a visit with friends; now, his language, written and spoken, is severely impaired, and he is unable to recognize people once close to him. Then, we took long walks in the park; now, he can barely manage a short walk down the hall using a walker. At 85, he’s frail, weak, incontinent, infection prone. But he still walks and feeds himself, enjoys music, food and museums, and daily proclaims his love for me and for his aides. He is still, as always, the love of my life.

During the first five years following publication of my memoir, I sometimes posted updates about our life together on my Love and Dementia blog at Psychology Today. Some of these I plan to re-post here, followed by new updates of our ongoing saga. I hope to report on the dramatic turns this disease will take but also on the small triumphs of finding ways to hold our life together and keep it sweet, as Scott continues his inevitable decline. 

For millions of older people, a big part of their lives involves, or will involve, caregiving (and also care receiving). But I won’t limit my new blog, as I did my previous one, to love and dementia. I see this venue as an opportunity to explore the many faces of age and ageism, always informed by the feminism that changed my life when I became a women’s liberation activist. That was nearly four decades before Scott’s accident turned me into an age and disabilities activist as well. Please stay tuned.