Editors’ Note: We usually think of caregivers as middle-aged or even older. But often the tragedy of a fatal or chronic illness affects the young members of a family as well. That was the case with Stefania Silvestri, whose father Giovanni was diagnosed with Alzheimer’s at age 48, when she was fourteen. Like most caregivers, Stefania was sometimes angry and bitter at her father and his illness. And her feelings were made worse by the crises she was going through: substance abuse and cutting herself. But as the agonizing years passed, Stefania’s mother Enida showed her the extraordinary love involved in caregiving, and a teenager came to terms with some of life’s saddest and most profound truths. From her book, Beside the Mountain: Finding Strength and Courage Through My Father’s Early Onset Alzheimer’s Disease, this is the story of Stefania and her family.
By Stefania Silvestri
There was an empty seat beside me, between my mother and I on our flight to Italy that summer of 2004, when we buried him. My younger sister Nicole had a carry-on bag, and I helped to lift it up into the compartment. As I made my way back to my seat, I watched my mother reach beneath the seat and readjust a piece of luggage. It was smaller than Nicole’s bag, but with the same sort of wheels on the bottom and a similar black handle on top. My mother didn’t want to put it up above us, but rather, have it stay where she could keep her eye on it.
We were finally going there, back to the Italian village of his birth. This town, his and my mother’s Pacentro, was where he would come to rest.
Around late 1996 and into 1997, my mom started keeping a list of all of the things that didn’t quite seem right—the pauses, the moments my father would clear his throat, his hand clenching tightly to the pen as it danced around the restaurant check while he’d think and plan what he needed to write.
I think perhaps he noticed it too—he’d sequester himself in his basement office for hours, reading self-help books, Improve Your Memory Now, and others. There were many people, his doctors included, who blamed depression. Depression often causes forgetfulness, a loss of interest, a loss of passion, of will. But surely it was more than depression, my mother would think to herself, as her list would get longer.
And so it was in 1998, three days before Thanksgiving, my father, 48, answered the phone and was told he had the brain of an eighty-five-year-old man. He looked at my mother as he stood motionless. I can almost see the panic in my mother’s eyes. I can almost sense the terror embedded in her soul.
The next September, I started my junior year in high school, and my older sister Flavia left for her junior year in college. Nicole entered the sixth grade, and my father became incontinent. The first time it happened, while he was on a walk with my mother, his gray sweatpants were soaked and darkened and his back was bent forward in shame.
In the beginning, it was hard for me to imagine my mother showering him in their bathroom. I didn’t understand if she went inside with him or stood outside with a washcloth or even just directed him on what to do next. How she sat him down after she dried him. How she made him face her as she delicately rubbed shaving cream on him, shaving him so expertly—he would hardly have a notion of a nick. He waits for her gentle touch to hold his face in her hands once more. I catch the meaning of love and I realize this is it.
Later on, after my teenage anger became too much for my mother to bear, she gave me a printout of Internet research she’d done: “The Stages of Decline.” The introduction, the small paragraph explaining the “the most widely accepted” stages in the progression of degenerative dementia. I got up from my bed in the middle of reading that paragraph . I tried to steady myself..
“Level Seven…speech ability limited to about a half-dozen intelligible words…ability to sit up lost…ability to smile lost…ability to hold head up lost…” And then I read again: “ability to smile lost,” and a simple picture of him looking over at me, his brown eyes warm, his lasting smile, washed over my head that hung heavy as I wept.
By the spring of 2002, as my father’s 52nd birthday approached, we could never leave him alone. I was supposed to be looking after him that afternoon as he sat in his recliner watching the stock market channel, staring at the numbers, forgetting every sign and symbol. I remember trying to keep my heavy lids from falling shut. When I awoke, an hour or so later, the recliner by my side was empty. My mother was upstairs, screaming that she couldn’t find my father.
The front door was closed, and I couldn’t tell which direction he had taken. I drove and drove and it seemed like I had driven much too far for my demented father to have traveled in such a short time. Sweat poured from my face and from under my arms. And then I saw him.
He was stumbling, grumbling—hunched over, his arms at his side. I rolled down the window, swerved a bit, and yelled to him. But he kept on walking. “Daddy!” I yelled, “Stop! What’s the matter with you?!” I pulled into a driveway to cut his path on the sidewalk and his eyes were furrowed and dark and he shook his head as cars whizzed by us. “Get in the car, dad. Come on.” He shook his head. He screamed at me, telling me to go. “Please, daddy, please,” I said. “Let’s go home.”
After I finally talked him into getting back inside the car, I locked the doors. The next day, my mother told me to pick up childproof doorknob covers at Walmart. Since I worked there, I could get a discount, and I felt useful to be able to save her a bit of money.
My dad’s last birthday at home, before he went to the nursing home, was on March 20, 2002. He turned fifty-two that day. My mother had made pasta, feeding it to him after cutting it up in small pieces. Nicole and I cleaned up the table as our mother was finishing up with him—she had already finished eating, sitting down before any us so that she could devote more time to feeding her husband.
When he was done eating, we brought out a chocolate cake with a lit candle in the center. He smiled. And then, he slowly puckered his lips and set them tenderly on my mother’s cheek as Nicole took a picture. Behind the television and on top of a bookshelf, pictures from my father’s birthday lie displayed in a multiple picture frame. The one of my father’s kiss is placed above the rest and I imagine it sometimes as being the last kiss he ever gave his wife, freely—in a rare moment of near total lucidity.
He was sent to a hospital to adjust his medicine the 27th December 2002. It may have been the second time or the third my mother took him to the geriatrics floor of the hospital in downtown St. Louis. I visited once when he was there, and it frightened me more than I thought it would. A wing dedicated to the elderly infirm. And there, in the small waiting room, or living room, or maybe it was a sitting room, he sat behind the glass windows. He was put to bed by a doctor who said, “His dementia is certainly getting worse.” I wanted to tell this doctor and all the nurses there to go to hell with your observations of this crazed man in your old and withered wing.
In the spring of 2004, on the morning my father passed away, my breath smelled of bananas and coffee. Our friend Linda Rallo had come to the nursing home that morning with the food. She brought Nicole to my father’s room to meet my mother and me—we had spent the night with him, me grasping his hand, grasping my mother’s hand, hearing her tell him, “It’s ok, Giovanni, you can go.”
Neither one of us slept much, though my father didn’t move. He kept his eyes shut the entire night. He had been sleeping for several days, off and on oxygen. That night I don’t recall if the oxygen mask was on his face. I see him as clearly as I used to in my memory of that final night. I was between my mother and my father and it was as though it was how it was meant to be and always remain.
A hospice nurse hadcome in at one point as we stood around my mother who kept adjusting his oxygen, wondering why his fingers were turning blue. I’m not going into the biological processes anymore. Just take this time to be with him,” he said, as my mother looked at him and realized what she had to do
She took away the tubes from his nose, lifting his head gently as she took them away. And then she shut the machine off and wheeled it back. Nicole and I stood together at his side, my mother, at the foot of the bed.
We said goodbye to him that morning. Tremendous and unexplainable, the disease had long since left us hollow, but our final goodbye to him was saturated with all he was and all he would forever be.
To learn more about Silvania Silvestri, and to buy her book, visit www.stefania-silvestri.com.