My heart lurched when I saw four missed calls and a text from my husband’s caregiver. “Perry is in the hospital…pls call me.” I had been in meetings all morning without my cell phone.
I called the caregiver in a panic.
“What happened?” I asked.
“I couldn’t get him to walk after lunch,” The caregiver said. “I called 911 and they took him to the emergency room.”
I dashed out of the office and headed to the emergency room in West Los Angeles.
Memories of my husband’s cardiac arrest 14 years earlier flooded my mind. I remembered the panic and terror I felt as I paced the floors of the emergency room. I remembered how I prayed with fervor that he would wake and we would be able to resume our lives.
But it didn’t work out that way.
When he woke from his two-week coma, his thoughts were jumbled and his speech was at times incoherent. He had short-term memory loss and didn’t initiate speech. He had problems with his balance. He came home but never resumed his career as a bankruptcy attorney and now needed full-time care.
Perry had not been hospitalized since his cardiac arrest and I wasn’t sure what to expect. When I arrived at the emergency room, a nurse was adjusting his IV and checking the monitors.
I moved a chair next to his bed and waited. He was awake but restless. Finally, four hours later, the doctor, a slim woman with a broad smile, appeared.
“Your husband was quite sick when he was admitted,” she said.
I felt a sense of dread.
“He had a fever of 102 and a very high white blood cell count,” she said. “His heart looks fine. It’s the infection that is a mystery.”
I exhaled. He wasn’t going to die. It was just an infection.
After he was moved to a room upstairs, a team of nurses and helpers surrounded us to settle him in.
The nurse asked, “Will you be spending the night?”
I thought about all those nights when Perry was restless and I was awakened by his twitching and turning. I would lie in bed filled with anger and pity at my plight. I thought about how relieved I would feel if I put him in an institution or if he passed away.
At least for tonight, I could be relieved of all caregiving duties while he was being looked after in the hospital. I could stretch out and sleep deeply without Perry.
“No,” I said. “I’ll be going home.”
It was after 10 p.m. when I got home. I was exhausted, but sleep came uneasily. I worried and wondered if Perry was disoriented and missing me. I stayed on my side of the bed and felt the emptiness beside me, as if I didn’t want to violate his sacred space.
The next morning, I arrived at the hospital to find Perry sticky with sweat. He looked bewildered and uncomfortable.
“Are you OK, Perry?” I asked. He didn’t respond.
The nurse came in.
“He didn’t sleep very well,” he said.
They had kept the lights on and the door open to all the noise and chatter at the nurse’s bay because he didn’t respond to them verbally. I found a washcloth and moistened it with hot water. I wiped his face and head. I tracked down the nursing assistant to change his diaper and gown. I ordered breakfast. By mid-morning, he was clean and had finished his meal. His coloring returned and his ever-ready smile replaced his frown.
As I sat next to him, I realized that there was no escape from caregiving.
Even though he was hospitalized, he still needed 24-hour care. He understood everything that was said to him but he didn’t initiate conversation. He wasn’t able to summon nurses or staff on his own.
I went home to an empty house. For the past 14 years, we had been on autopilot. After dinner, I would guide Perry to his leather lounge chair. After the 11:00 news, I turned out the lights, walked to his chair and held out my hands to help him stand. Together we slowly walked to the back bathroom, and then to bed.
Now, I sat on the living room couch alone and gazed at his empty chair. The presence of his absence loomed throughout the house. He was the vitality that made our house a home. I often tired of caregiving and life with disability, but I wanted him home so that my heart could stop breaking over and over at the thought of possibly losing him.
Postscript: On April 30, 2018, Cynthia’s husband, Perry, passed away surrounded by family. Any relief from caregiving she had imagined has been overshadowed by a grief, vast, deep and wide.
This piece, originally in longer form, is part of an ongoing collaboration with Months to Years, a nonprofit quarterly publication that showcases nonfiction, poetry and art exploring mortality and terminal illness.
Cynthia Lim is the author of the memoir, Wherever You Are: A Memoir of Love, Marriage and Brain Injury. She holds a doctorate in social welfare and recently retired from the Los Angeles Unified School District.
Photo by Cater Yang