Months To Years Summer 2018 MTY_Summer2018_v7 - Page 21

“Are you OK, Perry?” I asked. He didn’t respond. hand to his mouth. Then I would clean up his plate, wipe the table and guide him to his leather lounge chair. The nurse came in.  I would sit on the couch near the lamp and we watched TV while I played games on my iPad. After “He didn’t sleep very well,” he said. “The night crew said he the 11:00 news, I turned out the lights, walked to his chair was restless all night.”  and held out my hands to help him stand. Together we slowly walked through the kitchen to the back bathroom, They had kept the lights on and the door open to all the and then to bed. noise and chatter at the nurse’s bay because he didn’t   respond to them verbally. His fingers were sticky from Now, I sat on the living room couch alone and gazed adhesive. I found a washcloth and moistened it with hot at his empty chair. The presence of his absence loomed water. I wiped his face and head. I tracked down the throughout the house. Even when I traveled on my own, nursing assistant to change his diaper and gown. I coaxed he was always home, being cared for and waiting for me. him to put his knees down and relax. I ordered breakfast He was the vitality that made our house a home. I often as he had not eaten since lunch the previous day. By tired of caregiving and life with disability, but I didn’t mid-morning, he was clean and had finished his meal. want him in an institution where they spoke to him as if he His coloring returned and his ever-ready smile replaced couldn’t understand. I didn’t want him in a hospital gown his frown. When the physical therapist came, we got him and in the floppy, messy diapers with tape that didn’t up and walking, then sat him upright in the lounge chair stick. I wanted his teeth brushed and his hair washed and instead of lying in the hospital bed.  combed to the side. I wanted him treated with dignity. I wanted him home so that my heart could stop breaking As I sat next to him, I realized that there was no escape over and over at the thought of possibly losing him. 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. Postscript: On April 30, 2018, Cynthia’s husband, Perry, He wasn’t able to summon nurses or staff on his own. The passed away surrounded by family. She advises that any nursing staff spoke to him in loud tones, as if he were hard relief from caregiving she had imagined - during the 15 of hearing or in childlike voices, as if he were a toddler. years of living as a caregiver to a brain injury patient – has There was no escape from worrying about his health or the been overshadowed by a grief, vast, deep and wide. 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 Cynthia Lim is the author of the forthcoming memoir, treated the infection with massive antibiotics. The caregiver Wherever You Are: A Memoir of Love, Marriage and and I took turns tending to him so that someone was Brain Injury, that will be published by Coffeetown always there when he was awake. In the late evenings, Press in September 2018. Her essays have appeared after he was settled down to sleep for the night, I went in Hawai’i Pacific Review, Kaleidoscope, Gemini home to an empty house. Magazine, Hobart, Forge Journal, and Witness   Magazine. She holds a doctorate in social welfare and For the past 14 years, we had been on autopilot – I came recently retired as the executive director for data and home from work at 7 p.m. and we had dinner, him sitting accountability for the Los Angeles Unified School District. at the head of the table and me urging him to eat. She lives in Los Angeles. Find out more about Cynthia at Sometimes I had to place food on his fork and move his 21