I can sense the question before it comes.
“How are you doing?”
I want to answer, How do you think I’m doing, with my husband morphing into a ghost? I’m dying here. But thanks for asking.
Instead I clench my fists and deliver a cheerful response: “I’m good.” Which is, of course, a lie.
My husband is demented.
I cannot say these words out loud. Pushed to the wall, I’ll say that my husband has dementia, like it’s temporary–a virus curable by bed rest and chicken soup. Murray admits only to memory problems, while I split hairs over which verb I can stand to put next to his decline. We skitter around the truth like insects caught in a pool of light and scurrying for cover. The reality is, we’re on a steady downhill course, with Murray in frantic pursuit of words and ideas he can’t remember, while I chase after him, trying to mine precious nuggets of coherence buried in his muddy ramblings,
Murray imagines himself still capable of living a richly layered life, despite what his psychiatrist calls a severely impaired executive function system. What the hell is that? I wonder. Like any medically illiterate person confronted with a diagnosis rendered in doctorspeak, I consult Wikipedia, where I learn that Murray can no longer plan or initiate appropriate actions, think abstractly or adapt to the unexpected.
Dementia has certainly demolished Murray’s once-formidable planning skills. “What am I doing today?” he asks me repeatedly. I answer each time, “Patrick is coming after breakfast.” But when the physical therapist appears, my husband goes into shutdown. “What’s he doing here?” Murray demands, as if I’ve backed him into a corner.
The irony stabs me in the gut. My brilliant husband, who once held the title Chairman, Marketing Plans Board at a global advertising firm, can no longer plan a single hour of his day.
Murray’s losses are staggering. With his fragile and easily loosened grip on reality, he flits in and out of incoherent thought patterns, conflating unrelated ideas he picks up from CNN into bravely disjointed phrases brimming with meaningless content. “Aftershocks coming with the activities of that bird hiding behind a tire.” This nonsense from a man who once prided himself on his razor-sharp intellect. I grieve for that unraveling intellect, for that gorgeous brain I found so compelling during our thirty-five years of marriage.
At eighty-seven, Murray has sixteen years on me, and maybe I should have expected our age difference to play out as it has. But who pictures the worst when you’re young and crazy in love with a brainy, powerful man?
At times we’re both guilty of indulging in the elaborate fiction that our life remains the same, unimpeded by the specter of mental deterioration hemming him in, closing off his options and constricting his autonomy. While Murray does not have Alzheimer’s, his psychiatrist tells me that my husband is inexorably bound for the same black hole of oblivion. Instead of sliding quickly down the Alzheimer’s slope, he’ll make his way more slowly, with rest stops along the way, allowing him to retain whatever level of cognition he still has before the next drop-off.
I move to the beat of Murray’s swings in mood and competence. Locked in a slow tango of deception and uncoupling, our cheeks pressed together, we sway to the rhythms of his disease. Murray takes a step backward into God knows where, and I follow, whispering my sweet lies: “Everything will be fine. You’ll see, my darling.” But even as I beguile him with untruths, I push myself forward into a life where he cannot join me, where I am alone with my fears, where I am in charge.
My husband, the former control freak, abdicated power with the most succinct sentence: “You do it.” Last year, when our basement was mysteriously filling with water, Murray flashed me his endearing smile and said, “You fix it.” Me? Hello?
Yes, I now play the leading role in our family drama. Murray appears in an occasional cameo, taking out the trash or flooding the apartment with water he’s forgotten to turn off, but mostly he prefers to nap or watch TV. I see him gradually withdrawing into his increasingly disheveled thoughts, leaving me to steer the ship.
Each day I say a silent goodbye to whatever has gone missing from his personality. Memory, empathy and initiative have already peeled away, leaving a docile core neither of us would have believed possible.
Medicine has no magic bullet to fix my husband’s dementia. At least not yet. And sadly, I will soon be living with an imposter, someone who no longer knows me or himself. I silently plead with God to give my husband a break, to let us coast for awhile, before his cognition disappears forever. As it will.
Farewell, my beloved husband. I will accompany you on your journey, but I cannot be your guide. You must find your way on that grim path alone. But not too soon, my sweet. Hang on. Dance with me just a little longer.
About the author:
Marilyn Hillman is a photographer and writer. Her essays have appeared in The Healing Muse , The Yale Journal for Humanities in Medicine , and Ars Medica . She began writing as a way to confront the realities of her husband’s dementia and is currently working on a book about their journey through his illness.