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A symphony in hospice

Published online by Cambridge University Press:  28 February 2022

Richard E. Chunga*
Affiliation:
Department of Gerontology, University of Massachusetts Boston, Boston, MA
*
Author for correspondence: Richard E. Chunga, University of Massachusetts Boston, Department of Gerontology, 100 Morrissey Blvd, Boston, MA 02125, USA. E-mail: richard.chunga001@umb.edu
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Abstract

Type
Essay/Personal Reflection
Copyright
© The Author(s), 2022. Published by Cambridge University Press

Even as a young boy growing up in 1930s Brooklyn my father said he was enamored with classical music. He would play records in the room he shared with his brother Lawrence and stand on a wooden box, pretending that he was conducting an orchestra. His hands would soar through the air, rhythmically guiding the violins to their powerful crescendo.

When I was a young boy, sitting on our carpet in front of the stereo listening to stations littered with pop hits and catchy tunes, these stories didn't mean much to me. Nevertheless, my father would patiently describe the music as vibrant and powerful, as he waved his hands through the air in time with Wagner's Symphony in C major and Beethoven's 3rd. I could never really understand why he did it, but his strange performance always made me smile.

As I grew older, though I never fully committed my love to classical music, I learned to appreciate the genre and his passion for it. Even as my father began to forget the names of people he'd met many times, he never forgot his favorite composers. He maintained his love of the music through his forced retirement, which he managed to hold off doing until after he had celebrated his 80th birthday. When I left to attend university, I would come home every weekend on the Long Island Railroad to help my mother with his care, and to see how much more forgetful my father was becoming.

The onset of Alzheimer's disease is often very slow and insidious, which means that early on in its progression you perceive the person as they were yesterday, as they always have been. Even a diagnosis, which is typically challenging to acquire, doesn't quite draw the line in the sand that says things will be different from now on. During these early visits, I would too often take my anger toward the disease out on him. How could he be doing this? Why couldn't he just remember? My father's eyes had always been a place of quiet intelligence and comfort, but they were slowly becoming clouded by cataracts and confusion.

Fortunately for me, he would always quickly forget my bursts of frustration. I could never know whether it was the disease or the deep patience and easy forgiveness that defined his personality. By way of apology, I would play classical music on my phone, and we'd sit and listen together. Before long, his eyes would close, and he would begin leading his orchestra through the peaks and valleys of the symphony. The comforting familiarity of his arms gliding through the air was enough to wave away my frustration, but the guilt and sadness often remained.

Several days after abdominal pain sent him to the hospital, my father was admitted to hospice care. Every day after work I took the 6 train to the Bronx to meet my mom — who had taken leave from her job as a home health aide to stay with him — and my older siblings and family members who rotated their frequent visiting schedules. Despite his prognosis, he did make it to his 86th birthday, although it was not long after that when he lost his ability to speak.

My mother and I did our mourning in stages. We mourned when he was admitted to hospice, when he lost his voice, when he could not lift himself up on his own. I later realized we had been grieving this way for a long time.

By the time the doctors were able to narrow the estimate of death to a week, I had taken my own work leave and had been staying at the hospice nearly all day, every day. It had been a long time since he'd moved independently, so the nursing staff showed me how to gently massage and move his limbs to keep him comfortable. On one rare occasion that it was just my mother and I by his bedside, we decided to begin a ritual of telling him that we were okay. We would whisper to him that we were grateful for everything he had done, that we were safe, and he was too. We could not know if he heard us, much less understood what we were saying, but we kept it up anyway.

“This is the music I would like to go out listening to,” my father had said many times, while we listened to Mozart's Jupiter Symphony and Bach's Mass in B minor on the couch. The first time he'd said it, I knew I would never forget it.

I placed my earbuds in my dying father's ears, checked that the volume was not too loud, and selected a symphony. My mother and I watched him, and his unfocused eyes watched the ceiling.

My mother started to cry, and I shifted my focus to her, and then followed her eyes down my father's right arm, past the IV line, and to his hand, where his index finger was making small but distinct movements, as though tracing letters in the air. I watched my dad's finger dance, and I smiled.