“Are you the kid?” asked an intern in my mother’s room at Hamot Hospital, in Erie, Pa. I nodded. “Welcome home,” he said. With those auspicious words, I embarked on an amazing journey. During the next year, I would not only place one parent in a nursing home, bury another, and sell my childhood home, I would also write my dissertation in English at the University of Minnesota-Twin Cities.
Although I didn’t know it then in my mother’s hospital room, I was about to be awarded a fellowship for my dissertation on Utopian and dystopian literature. That fellowship, which gave me mobility, would allow me to live in both the Keystone State and the Land of Lake Wobegon almost simultaneously: two weeks in Erie and then a week in the Twin Cities, repeatedly. Those rotations were accompanied by lots of time in the never-never land of Interstate 90 rest stops, cheesy motels, and airports in Detroit and Chicago.
Before I arrived in Erie, I had received notification that my first scholarly article was slated for publication in Utopian Studies. I had also secured as a member of my dissertation committee the director of the Ralahine Centre for Utopian Studies at the University of Limerick, in Ireland. Despite those victories, I didn’t feel very utopian that afternoon as I said hello to my mother.
I had arrived in her room after visiting my father in the intensive-care unit on the floor above. It was late April of 2006. About 18 months before, my mother, a former elementary-school teacher, had allowed her blood-sugar levels to reach 1400. According to the doctors, the equivalent of “maple syrup” had flowed through her veins. Thus, my mother, who had once achieved the No. 1 score in Erie on the national teachers’ recertification exam, had suffered a stroke, plunged into a two-week diabetic coma, experienced grand mal seizures, and awakened from her protracted sleep with vascular dementia, which had destroyed her short-term memory and made her combative.
My 75-year-old father, who had been my elementary-school principal, had, against doctor’s orders, elected to bring her home. As is often the case with caregivers, my father, who had lung and heart problems, also fell ill. The man who had once run three schools, supervised 75 teachers, and dealt with thousands of students now lay in a coma in the cardiac ICU.
And so there I stood, looking at my mother, wondering what in the world I could do to help both of them. When my father had been taken by ambulance to the hospital, my mother had attempted to walk to the bus stop to see him. She had fallen and hurt herself, although not seriously, and was released from the hospital relatively quickly. One of my parents’ neighbors had seen the fall, summoned the ambulance, and then called me. “Come home now. They need you,” the neighbor had said. I was on a Northwest Airlines flight the next morning.
During the early stages of my time in Erie, when I realized that my mother could never be left alone, I stayed with her and hired home-health-care workers from a local nursing service when I needed a break or wanted to visit my father.
During the day, when I wasn’t sitting by my father’s bedside, I tried to read and work on my dissertation, but my mother’s dementia made that very difficult. Sometimes she would storm into the room where I was writing and pull the plug on my dying laptop, trashing my work. “It was buzzing too loudly,” she would say. Other days, early in the morning, she would swing open the door of my room, where I was sleeping, flip the light switch off and on, and say, like a drill sergeant, “Get up. Get Up.”
If the days during my first two-week stay in Erie were odd, the nights proved much weirder. One of the side effects of dementia is Sundowners Syndrome. During the nights, the afflicted wanders aimlessly. One night, right after midnight, I heard my mother get up. I got out of bed, opened my bedroom door, and saw her drift by. I followed her out to the living room, where she sat down on the couch in her nightgown. I turned on a lamp, and we both looked out the large picture window.
Dementia is odd. The afflicted person is confused most of the time and sometimes combative. But moments of complete lucidity occasionally cut through the miasma. In one of those moments that night, my mother cried and said, “I’m so sorry to saddle you with both of us at the same time.” I told her that I owed them for all they had done for me.
In July of that year, I legally assumed guardianship for my parents. Then, with access to their finances, I started paying bills, set up an irrevocable burial trust, and tried to determine my father’s prognosis. He had emerged from the coma, but he was breathing through a tube in his throat and taking sustenance through another in his stomach.
At the end of one trip right before the guardianship hearing, I hired home-health-care workers to stay with my mother around the clock while I went to Minneapolis for a few days. The afternoon I left, I asked one of the nurses, Stephanie, to bring me to the airport. My mother came along, and the three of us sat in the airport restaurant and had a coke. As I went through security, my mother waved to me. Everything seemed under control. I couldn’t have been more wrong.
I arrived home around midnight and collapsed in a heap. The next morning, as I came into the living room from the shower, I noticed that my message machine was blinking. I played the message and listened in horror. My mother was now in the mental-health unit at Saint Vincent Hospital.
I called the cellphone number given at the end of the message. The nurse told me that in the middle of the night, my mother had gotten up, walked into the living room, seen the nurse sitting in a chair, and screamed, “Intruder.” She called 911 and summoned the police, who had arrived, figured out what was really going on, and shipped my mother off to the mental hospital.
Back to Erie I flew, immediately. In the mornings, I visited my father and supervised his transfer to a nursing home that specialized in long-term pulmonary and respiratory care. In the afternoons, I wrote my dissertation and visited my mother in the mental hospital, which kept her until I was able to arrange nursing-home care for her at the same nursing home.
Unfortunately, while she was in the mental-health unit, the psychiatrist noticed a dry cough. He ordered an X-ray, which showed a tumor. I was now on red alert for both of my parents. For the next few months, I debated with hospital and nursing-home doctors, who wanted nature to take its course for my mother, and made an alliance with two surgeons, who recommended a biopsy.
During the summer and early fall, I wrote and spent time just sitting with my mother and father. Occasionally, I helped the attendants lift my father to change him. Other times, I read him stories and part of a novel. He loved Leon Uris’s Queen’s Bench VII.
My father’s coma had produced a bit of dementia, so sometimes it was hard to tell how much he understood things. One day, I told my father that I had received a phone call from California. I’m also a science-fiction writer, and one of my stories had just been named a finalist in the Writers of the Future competition. Later, my dad called me at the family house and said, “You won.”
I was very confused. How had the competition gotten my dad’s telephone number? I called California and was told that the final round of judging was just getting under way. They would know something in October. Just a mental burp produced by the dementia, I thought.
During the early fall, my father’s condition worsened. In late September, he dropped into a another coma. At the end of the month, I held his hand, thanked him for everything he had done for me, and promised him that I would make sure my mother was taken care of. A few days later, when I was back in Minnesota, the doctor from the nursing home called.
“Where are we?” I asked. “Pretty close to the end,” he replied. “What do you want to do?”
Because my parents had not given any medical directives, the decision about what to do fell squarely on my shoulders. “Let him go,” I said.
On October 4, 2006, the doctor told me that my father had died. We had agreed that I would tell my mother. I remember walking around outside my apartment in Minneapolis. The trees were beautiful with shades of red, and the sky was a brilliant blue. I recalled George Orwell’s line from his essay, “A Hanging,” in which he talked about the real implications of death: “One world less.” And now a small world, part of my world, was gone.
In the fall, after my father’s death, surgeons removed my mother’s tumor. Thankfully, it was benign. By the end of the year, I had cleaned out and sold the house, organized my parents’ finances so we could cover $6,000 a month in nursing-home bills, and placed my mother in two different nursing homes. The first one hadn’t been able to handle her; the second one was able to deal with her level of dementia.
In the meantime, while waiting in airports and recovery rooms, I wrote three reviews for journals, and two more chapters of my dissertation. Both chapters were published without much revision the following year.
In the spring, the heavy work in Erie was done. I stayed in Minneapolis, visited my mother every three weeks, and wrote the rest of my dissertation.
I learned several lessons from my experience during my fellowship year. First, I realized just how much I could handle. I also realized that, far from debilitating me in any real way (except when my mom pulled the plug on my work), all of the crises allowed me to perform in ways I never thought I could.
My time helping my parents was in many ways a gift. My writing was better than it ever had been, and I was on an almost-constant adrenaline rush from making life-and-death decisions. The stakes of graduate school in English are almost laughably low. For six months, the stakes for my family were incredibly high, and those stakes made my writing weightier as well.
Postscript: The week after my father’s funeral, I flew to Colorado Springs to present a version of a chapter and soon-to-be article at the Society for Utopian Studies annual conference. Ready to focus on something, anything, other than funeral planning and tumor extraction, I enjoyed the reprieve provided by the meeting.
After the conference, I arrived at home late at night. The answering machine was flashing. I rewound and played the messages, several of them from hospitals, doctor’s offices, and the funeral home. Then I hit the final message: It was from the Writers of the Future competition. My science-fiction story had won second place out of about 1,000 entries. I almost cried. My father had been right. I wondered whether this victory wasn’t perhaps his final gift to me and a farewell thank you for the help I had given.
