My heart lurched when I saw four missed calls and a text from my husband’s caregiver. “Perry is in the UCLA Westwood hospital . . . pls call me.” I had been in meetings all morning at my job with the school district and hadn’t carried my personal cell phone with me.

I called the caregiver in a panic.

“What happened?” I asked.

“He’s OK now,” said the caregiver. “We were at the mall and I couldn’t get him to walk after lunch. I tried calling you but I guess you were busy. I called 911 and they took him to the emergency room.”

I dashed out of the office and headed west from downtown Los Angeles to the emergency room in West Los Angeles. Memories of the first time my husband was hospitalized flooded my mind. He had suffered a cardiac arrest 14 years earlier when we were vacationing in Portland, Oregon. I remembered the panic and terror I felt as I paced the floors of the emergency room, not knowing if he was dead or alive. And then came the announcement that he was alive, the paramedics had revived him but he was in a coma. His brain had been deprived of oxygen and they didn’t know if he would survive the procedure to place a stent in his heart. I prayed with fervor that he would stay alive, that he would wake and we would be able to walk out of the hospital together and resume our lives.

But it didn’t work out that way. When he woke from his two-week coma, he wasn’t the same. His thoughts were jumbled and his speech was at times incoherent. After six months in various rehabilitation facilities, it was clear that he had severe cognitive deficits. He had short-term memory loss and didn’t initiate speech. Although he regained the ability to walk, he had problems with his balance. He came home but never resumed his career as a bankruptcy attorney and now needed full-time care.

Over the years, I learned to adapt to life with disability. Our two sons grew from teenagers into men with their own independent lives in Tucson and New York. Perry’s days were carefully orchestrated with walks at the mall or beach with the caregiver, speech therapy and classes at the community college while I worked full-time. At night, I took over caregiving duties. We still managed to travel with accommodations and continued to have dinners out with friends although I missed my former life, and sorrow always lingered in the background.

Perry had not been hospitalized since his cardiac arrest 14 years ago 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. He smiled at me but I could tell by the dullness in his eyes that he was sluggish.

“He had a high fever and we have him on antibiotics,” she said. I pressed for more details but heard the familiar refrain, “You have to wait for the doctor.”

I moved a chair next to his bed and waited. As hour after hour passed, I remembered the bedside vigil in Portland, whispering in his ear, imploring him to wake and hoping that he would emerge intact. This time, he was awake but restless, twisting and turning on the hospital bed.  Nurses came and checked his blood pressure and his vital signs periodically. Near the dinner hour, I sent the caregiver home. Finally, four hours later, the doctor, a slim woman in her 30s with long, curly hair and a broad smile, appeared.

“Your husband was quite sick when he was admitted,” she said.

I felt a sense of dread. What if he had some deadly disease? Was this the beginning of the end?  I flashed back to Portland when a row of doctors faced me and laid out Perry’s prognosis. They had given him a 15 percent chance of survival.

“What do you mean by ‘quite sick’?” I asked.

“He had a fever of 102, a very high white blood cell count and the enzyme test indicated some strain on his heart,” she said. “We did an EKG and chest X-rays and 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.

“Did he seem sick over the last few days? Has he complained of any discomfort?” she asked.

It was the Monday after Perry’s 61st birthday. We had a quiet Sunday at home and our only outing had been to the grocery store. I didn’t notice him feeling overly warm and he didn’t have any trouble pushing the grocery cart. But he never complained, ever, about feeling sick or being in pain. Even before his brain injury, he had had a high tolerance for pain.

“No, he was fine yesterday,” I said

“We want to keep him on massive antibiotics until we know the source of infection,” she said.

“How long?” I asked. We had plans to fly to Tucson over the weekend to spend Mother’s Day with our son Paul who had just returned from a tour of duty in Afghanistan.

“Well, today is Monday. At least until Thursday, maybe Wednesday,” she said. “You may still be able to go away for the weekend, depending on how well he responds to the antibiotics.”

I thought about his weakened state and how hard it usually was to navigate the airport and security lines in his wheelchair. In his sluggish state, it would be even more difficult. It was too early to tell but I knew how quickly well-established plans can change, just like they did 14 years ago. 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?”

The private room was spacious but I looked at the stiff vinyl couch near the window and thought about our comfortable queen-size bed at home. I thought about all those nights when Perry was restless and I was awakened by his twitching and turning and would have to move to another room to get a good night’s sleep. I would lie in a bed filled with anger and pity at my plight and wonder how much longer I would have to endure this. I thought about how relieved I would feel if I put him in an institution or if he passed away and I wouldn’t have to be responsible for his caregiving. I thought about the elation I always felt when I traveled alone and had my own hotel room. For the past 14 years, I had not left my house unless someone was there to take care of him.

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 after we put him to bed for the night.”

It was after 10 p.m. when I got home. I made phone calls to our sons and sent emails to reschedule work appointments. I canceled our flight to Tucson and arranged for Paul to come home to Los Angeles for the weekend. Exhausted, I went to bed but sleep came uneasily. I didn’t feel relief and I didn’t revel in the freedom. I worried about Perry in that hospital bed as I lay in the darkness and wondered if he was disoriented and missing me. I didn’t stretch out my legs. 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 to find Perry huddled in a corner of his bed with his knees up. The bed was raised at a 45-degree angle. His brows were furrowed and he was sticky with sweat. He looked bewildered and uncomfortable but his expression softened when he saw me.

“Are you OK, Perry?” I asked. He didn’t respond.

The nurse came in.

“He didn’t sleep very well,” he said. “The night crew said he was restless all night.”

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. His fingers were sticky from adhesive. 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 coaxed him to put his knees down and relax. I ordered breakfast as he had not eaten since lunch the previous day. By mid-morning, he was clean and had finished his meal. His coloring returned and his ever-ready smile replaced his frown. When the physical therapist came, we got him up and walking, then sat him upright in the lounge chair instead of lying in the hospital bed.

As I sat next to him, I realized that there was no escape from caregiving. Even though he was hospitalized, he still needed assistance and 24-hour care. He understood everything that was said to him but he didn’t initiate conversation and instead responded in simple sentences. He wasn’t able to summon nurses or staff on his own. The nursing staff spoke to him in loud tones, as if he were hard of hearing or in childlike voices, as if he were a toddler. There was no escape from worrying about his health or the care that he was receiving, whether he was at home or in an institution.

Perry stayed in the hospital for three more days while they treated the infection with massive antibiotics. The caregiver and I took turns tending to him so that someone was always there when he was awake. In the late evenings, after he was settled down to sleep for the night, I went home to an empty house.

For the past 14 years, we had been on autopilot – I came home from work at 7 p.m. and we had dinner, him sitting at the head of the table and me urging him to eat. Sometimes I had to place food on his fork and move his hand to his mouth. Then I would clean up his plate, wipe the table and guide him to his leather lounge chair.

I would sit on the couch near the lamp and we watched TV while I played games on my iPad. 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 through the kitchen 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. Even when I traveled on my own, he was always home, being cared for and waiting for me. He was the vitality that made our house a home. I often tired of caregiving and life with disability, but I didn’t want him in an institution where they spoke to him as if he couldn’t understand. I didn’t want him in a hospital gown and in the floppy, messy diapers with tape that didn’t stick. I wanted his teeth brushed and his hair washed and combed to the side. I wanted him treated with dignity. 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. She advises that any relief from caregiving she had imagined – during the 15 years of living as a caregiver to a brain injury patient – has been overshadowed by a grief, vast, deep and wide.

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