More than ten years ago I wandered, lost in a vibrant field of colors, in a huge craft store in New York City. The store was a place for all things creative in art: brushes, pads, paint and glitter.  Attentive shoppers seemed sure of their creativity and skill.  New ideas ran freely and soared. This store celebrated texture and tactile pleasure of the senses. Imagination created visual magic.

I had never visited this store before. My experiences with paper and paint were limited to childhood.  I remembered my kindergarten teacher’s remarks; she noted I was “awkward with the scissors.” Perhaps as a result, I preferred writing and drawing solitary thoughts in my childhood bedroom.  I had the freedom to create my own dreams, cultivate my own words, and not confine my crayons to a set pattern or subject my creations to a teacher’s judgment.

At this craft shop, I had an unusual mission: I sought crayons and a drawing pad for my patient, Juana. I was her hospice social worker and she wanted to draw copies of the Georgia O’ Keefe posters in her bedroom. Those bold prints connected her to her past: a Southwest palette a world away from New York City’s urban landscape. Two years earlier, Juana had moved from New Mexico to live with her daughter.  But Juana missed her life in the Southwest: the sunsets, the colors, the quietude and sense of space. New Mexico was her forever home in her imagination.

On my most recent visit, Juana’s eyes had been closed. She wore a purple nightshirt, hidden under her aqua quilt. She dreamed of returning to the Southwest where color filled her life every day, not just when she was drawing.

The next day I called her daughter to tell I had the requested pad and crayons and to ask when I could visit.

“You’re too late. She died this morning,” she said gently. “I’ll call you later.”

I paused to remember her mother’s dream of returning home, and how she never realized that possibility.

The box of crayons became a useful gift for our hospice’s art therapist. She could always use additional crayons for her work. She provided support to children whose parent had died.  Coloring expressed yet also contained their sadness. Coloring was familiar when they had gone through loss. She gave them an example about Noah’s Ark. What would they include in the Ark? What would they leave out if there were a storm?  Drawings created healing and this was how she helped them to heal.

Home hospice work forces immediate intimacy upon a family. Those who work in hospice internalize how to balance this intrusion into a family’s world with cultivating trust. When I entered a patient’s home, I entered a private zone. I was a newcomer in a family’s setting. I took my cues from them. Lacking medicine, technology, or equipment, I often felt I was less intimidating than some professionals. And I hoped that would help me gain their trust.

I waited to be given a chair of their choice.  By noticing a pastoral picture, a family photo, or a gray couch, I would try to make small connections with their family life. In a festive kitchen with luminous pots shining, but awaiting use, I imagined their family meals. I tried to understand and respect their world through the clues the setting offered. Sometimes I felt contained in the quiet cocoon of a hushed bedroom when the outside world felt jarring. I heard so many stories. Beyond the closed doors was each individual’s book. I arrived for the reading of the last chapter.

Two days after Juana’s death, I visited Eve.  She had grown up in rural Iowa and had moved to New York City in her twenties. She had become a Rockette at Radio City Music Hall and enjoyed all things urban.  As a true New Yorker, she loved new plays and new movies. She never married.  The top of her bureau was like a scene from The Glass Menagerie with a collection of glass cats in lavender, mint green and sunshine yellow.  Photos from her early life revealed her long legs and cropped blonde hair. Even with advanced cancer, Eve always took great care with her appearance and wore satin nightgowns. She loved telling and retelling about her dancing career while Cole Porter songs played in the background. The lyrics reminded her of her former spirited times. The hospice staff enjoyed visiting her. She welcomed everyone. She had outlived most of her friends but maintained phone contact with two former Rockettes and her older sister.  Their visits were rare, though, and so she spent much of her time alone.  Despite her advanced breast cancer, she tried to be cheerful. But she also recognized the reality of her situation.

“I have something serious to ask you,” she said one day. “I’d like to be cremated. Do you know anyone who can help me?”

I told her that I knew someone who could help and who would visit her at home. I offered to stay while she called him.

On her classic black rotary phone, she dialed the number slowly, careful not to damage her nails that were—as always—polished in Forever Passion Pink. 

“He can be here next Wednesday at three o clock,” she said.

“Would you want me to come?” I asked.

“Yes, I would,” she said.

“I will be there,” I promised.

“I always thought I would be buried in my hometown,” Eve told the man from the crematorium. “But I don’t know anyone who lives there anymore. I haven’t been there for years,” she said and sighed.

She paused and seemed lost in her memories.

“Cremation is a practical choice for many people,” he replied robotically, as if he were in an advertisement for cremation.

I imagined how many times he must have said the same phrase.  His words missed an awareness of her sadness. I realized I had shared many visits with Eve but to him she was a brief interlude.

“I need time to think about this, but it’s something I need to do. Can I review the paperwork and mail the information back to you?” she asked.

“That would be fine. You can call me about any questions,” he said.
“Thank you so much,” she said to me. “Thank you for everything. I just need to rest now.”

She sounded tired and I felt exhausted by this half-hour interval. I was relieved that I lived nearby and could walk home. I did not have to face the clamor of the subway or the intensity of the hospice office. I thought of the question I asked new patients but applied it to myself instead: what would help you during this time?

What would help me at that moment was a bubble bath and a chance to hide under a massive quilt of comfort. I felt the weight of this work, its importance but also the fatigue it imposed upon those of us who chose it. My colleagues coped with sadness in a range of ways. Some sought an outlet from their work through exercise or hobbies such as gardening. Some found that the work made them acutely more aware of the quality of their days and the gift of healthy days.

The next day I met a new patient, an elderly man named José. He had a brain tumor and lived on a third-floor walk-up.  He spoke only Spanish but now hardly spoke at all. A painting of a benevolent Jesus in red was the highlight of his room and his hospital bed dominated the space. His daughter Gloria and I spoke in a combination of Spanish and English. His expression showed the extent of his pain.

My communication was Zen Spanish speaking in the present tense, like a flat soda without the fizz.  I used my hands to create shapes to encourage new and reluctant words.  I told Gloria in English, that although my Spanish was poor, I would always address her father as usted, the formal, as he was the patriarch of the family.  I would not call him tu, the informal. She smiled, looked at me directly and said, “you understand, Costanza.” Her nickname suggested she felt I was part of her family.

A week later, Sarah, the young hospice nurse, convened a meeting during which she, the hospice doctor, and I conferred with Gloria and her brother regarding their father’s last days. They welcomed us in a familial way and went to the effort of offering orange juice and donuts, despite the difficult situation they faced.

The doctor explained the likely trajectory of their father’s decline: he would lose interest in food and he might experience pain or agitation. He explained that the family could call a hospice nurse at any hour for guidance and visits could also be scheduled as needed.

I could sense a shift in both Gloria and her brother. They had welcomed us in as guests, but it felt as though—through the conversation—they now understood we served a somber role. Still, they thanked us for caring.

We left the apartment feeling quiet and reflective.  Sarah offered to drive me home.  She did not turn on the radio for music or to listen to the sorrow of the news.  She was new to this work and I was curious.

“Why did you decide to be a hospice nurse?”  I asked her.

“I used to be a nurse in a big hospital and the pace felt overwhelming,” she said.  “I always felt rushed. I wanted my days to be less harried: one patient at a time.”

“I understand,” I said. “My father had been a hospice patient and that was how I knew I wanted to do this work,” I replied.

“How do you cope with all the sadness?” she asked.

“I find poetry very comforting like a line from T. S. Eliot’s Ash Wednesday,” I said.  “It goes ‘Teach us to care but not to care. Teach us to sit still’.”

“I remember Robert Frost’s poem about being well acquainted with the night,”  I added.

Sarah understood and said she loved the poem too.

Finally, we arrived at my street. I knew my apartment would be wrapped in solitude. The frail trees were stark, a silhouette against the sky. The trees looked fragile without their protective covering.  I thought about E. B. White’s image that in winter the tree branches are as graceful as a ballerina’s arms. The sun disappeared on this cool fall evening. The scene would fade and slip into darkness.  I imagined crayons to visualize this beginning night: midnight blue, velvet black or autumn green.  The names brought me a sense of sadness. The store’s neon light looked subdued. The carnival crush of daily life was missing. High velocity sounds were not present. The stars and moon were not present. I walked alone in the dark.

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