During the two years leading up to his diagnosis, my husband, a highly respected physician, struggled to communicate and complete work, left me in doubt about his truthfulness, accumulated debt I was unaware of and wrote a series of notes that I found bizarre and degrading. Yet he often seemed so loving and well. I wondered if the insanity began with me.
Doctors finally explained the degenerative brain disorder in 2005, when he was 59. I’d never heard of primary progressive aphasia, a type of frontotemporal dementia that can devastate language skills and incite behavior mistaken for psychiatric disorders. Symptoms can sometimes be confused with those of Alzheimer’s, but in the early stages memory remains relatively preserved. Over time, however, the illness can seriously impair not only language but also insight, judgment and personality, usually in people under 65.
Despite the diagnosis, we kept our long-held plans for a family vacation. But at the last moment my husband said he wanted to stay home to clean the garage, insisting the kids (two, from my first marriage) and I travel anyway. Reluctantly, we acquiesced. During the trip he called daily and e-mailed to gush that he missed me “soooo much.”
Back home, one step in the entry hall changed everything.
“By the way,” he said without prelude, “I filed for divorce.”
“What? What?” These were gasps, not words.
“I filed for divorce!”
During our absence he had also moved into an apartment and sought a court order to keep me from talking publicly about his illness. All while professing his devotion.
The next morning, as I was still reeling, he stopped by the house to ask me on a “date.” And so began a cycle in which, each week, he courted me and then left me feeling damaged and discarded. Knowing the illness caused his behavior and yet somehow believing I could change it, I accepted every invitation. Six weeks later, for our anniversary, he invited me to dinner and gave me the book “Married for Life: Inspirations from Those Married 50 Years or More.” Minutes later he yelled, “You need to get a divorce!” Repeatedly, he accused my children and me of stealing belongings he had actually misplaced. His only explanation: “No answer necessary.”
Still, I begged and battled to save the marriage, exploring legal options as well. But halting the divorce required proving that he was incompetent in court — shaming him into accepting my care. Was that the right way to help? Then what? How would I protect the children? And so I let him go. But he stayed.
Following the divorce, seven months after he moved out, I received flowers and an invitation to New York City. I kept pursuing these glimpses of my husband with undeterred passion. A sparkle in his eye, the lilting laugh, dinner conversation not taken for granted but savored. In those moments, I reconnected with the man I fell in love with — only to lose him over and over again, because he wasn’t really there.
He declared our remarriage imminent. But certain things can’t be undone. Our family was irretrievably broken. Without a word, he had left two children he adored and nurtured for years. Now his kindness always led to what felt like indifference or cruelty, and the kids finally understood that they could not alter or endure it. They decided they wanted to say goodbye, so I arranged a meeting in the neighborhood park.
By this time, Chris was a 13-year-old lurching into manhood. Courageously, he stepped forward. “Thank you for being such a great stepfather,” he said. “You were a really important person in my life, and I’m glad I knew you.” They hugged; both started to cry. Alison, 11, took a tentative step. “Thank you.” She squeezed his waist, and he returned the gesture. My fingers stroked his silver hairline. “I love you,” I said.
Eventually we waved and eased away. “I’m lonely!” he cried. We hurried to embrace him. He sobbed uncontrollably. When his breathing found a rhythm, I whispered: “You’re part of our family. We’ll always be here for you.” He nodded and talked about going running before departing too slowly, an air of fragility around the former competitive athlete and intellectual powerhouse.
Two years later he maintains (barely, in my view) a solo existence a half-mile from me. In a life clouded with loss, acceptance does not include “getting over it,” because I’ll always miss the man I married. Our connection — despite the whims of a relentless disease — endures. But the continual yearning, rejoicing and mourning, a destructive pattern worse than death, demands emotional distance. Otherwise the illness will take two people. And he wouldn’t want that.
Katherine Nichols, who speaks in public about dementia, is completing a memoir.