By Eliezer Sobel, New Jersey, USA
My mother had Alzheimer’s disease for twenty years until she passed at 95. Before then, she and my father visited several nursing homes and were horrified by “all the old people” and promised never to put one another in a facility. My dad was true to his word; he kept mom home for the entire duration of her ordeal, initially caring for her on his own, then eventually with help from aides.
They lived in my New Jersey childhood home; my wife Shari and I lived seven hours away in Virginia. I drove up once a month to visit, and when I was home, we enjoyed daily SKYPE calls, during which my mother would gaze at the screen for several minutes, confused, then finally ask, “How long are they going to keep you there inside that little box?”
Fast forward to my dad at 90, still running the household, paying bills, shopping and cooking, managing a team of eight aides, driving my mother to appointments, creating unique culinary tricks to conceal her medications, on and on. Then one day, despite our frequent insistence that he hold the banister when using the stairs, he tried to go up to the kitchen clutching half a dozen grocery items with both hands, tumbled backward down the stairwell, landed on his head, and wound up in the Neurology Intensive Care Unit with a Traumatic Brain Injury. In a split second, our family’s entire world changed—for the second time. When Dad eventually returned home, he could no longer take care of anything he had been doing. We suddenly had two dementia patients needing full-time, at-home care.
Fortunately, Shari and I happened to be in New Jersey for the holidays, and we moved into my parents’ house the very night Dad fell, and never returned to our life in Virginia of 23 years. Thus began our 11-year caregiving journey of managing a mini-nursing home for two. As a 50-ish man (now 73) still living a post-hippie lifestyle, I had never had to do any of the “adult” tasks my father was still juggling successfully at 90. Yet out of necessity, I nevertheless managed to essentially “become” my father and take over his life.
I would eventually tell the story in The Silver Lining of Alzheimer’s: One Son’s Journey Into the Mystery. My primary intention was to communicate to other caregivers and families the “glass half-full” version of events; for, much to my surprise, our family enjoyed numerous moments of utter joy, unbridled laughter, and profound healings that were completely unexpected, and quite different than the mostly tragic accounts I had read of again and again.
My story did not discount the grief, loss, chaos and confusion that initially descended upon our household. That beginning stage has no timeline; every family is different, and we all grieve how we must. But we discovered that it need not go on forever. If one can fully grieve and eventually accept the unbearable loss of a loved one to dementia—(in my father’s case, his married partner of nearly 70 years)—all sorts of new possibilities can emerge that many caregivers might otherwise never uncover. My book was to assist those people to open themselves to a new way of seeing.
For on the other side of agonizing loss and helplessness, it is possible to recognize that a whole new person has appeared. She may not know your name, share your memories and history, and not even be able to talk sensibly anymore, yet beneath all of that, there remains a sense of connection, which I found was all that ultimately mattered to me. Consider a mother with a newborn infant: they have no shared memories, no name yet, and no language, and yet the bond that is formed is the most primordial one that humans cultivate.
Likewise, for the Alzheimer’s patient in the later stages, after all the memories have vanished, language has disappeared, and even names have fallen away, there remains a very familiar soul in your midst, and I promise you, that feeling is mutual. Such an insight requires a reframing of the entire situation, from one of only tragic loss, to one that expands to include daily fascinating encounters with a loved one’s pure and mysterious essence that remains unblemished. That ability to connect on a fundamental level of heart and soul was the precious silver lining that I treasured with my mom until her last breath.
About the Author
Eliezer Sobel, 73, is the author of two picture books for people with Alzheimer’s disease and other forms of dementia: Blue Sky, White Clouds: A Book for Memory-Challenged Adults, and L’Chaim! Pictures to Evoke Memories of Jewish Life. He has also published a spiritual memoir The 99th Monkey: A Spiritual Journalist’s Misadventures with Gurus, Messiahs, Sex, Psychedelics and Other Consciousness-Raising Experiments. He blogs for PsychologyToday.com and resides with his wife Shari in Red Bank, N.J. with their two cats, Shlomo and Nudnick.
His books are available at Elemi Press and Amazon
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