Hospice Stories on Living and Healing

Photo by Ricardas Brogys on Unsplash

My work as a hospice interfaith chaplain for 11 years feels especially relevant in the midst of a global pandemic. The lessons I’ve learned help guide me now as I navigate this new landscape. I want to share just some of them that they may be of help to others (know that names and details have been changed for confidentiality).

Plant Seeds: You Never Know What Your Actions Will Mean to Someone

My patient was a big guy, lying in the bed, face up, taking in raspy breaths. He was young—too young to be dying, too strong to be leaving his wife and his seven-year-old son.

I’ll call him “Jeff” and his wife, “Sheila.” He was my patient, but it was the whole family I was caring for, and it’s the son, “Oliver,” that the story is really about.

While Sheila, Oliver, and some of the couple’s many siblings were by the bedside, Oliver was darting here and there demanding attention. Sheila’s patience was wearing thin. As we talked, she started to cry. “Stop crying!” Oliver demanded. “You can’t cry!” as he poked her in the side. Sheila asked one of the sisters to take him out, but he evaded her, and no one tried too hard to send him away.

I suggested a prayer. Oliver started prodding his mother again, “Don’t be sad! Stop that!”

“It’s okay to be sad—okay to cry,” several of us said. His mother said sternly, “We are going to pray now. You can pray with us or leave.”

I addressed Oliver, “We can hold hands, Oliver, for a prayer. See what it feels like.” He took the hands of those beside him and quieted down. I offered words of hope, a release from any suffering, of support and assurance.

As we let go of our hands, there was only a moment’s silence before Oliver said, “You prayed for the wrong thing! You were supposed to pray for him to get better!” He was looking up at me as if he’d been betrayed. He ran to the couch and sat, staring forward. I knelt down in front of him so we were at eye level. “You want him like he was?” Without looking at me, he said, “Yes.” He stared ahead. “I’m sorry, Oliver.” I talked a little more to the family then said goodbye to them and to Jeff.

When I picked up my phone messages the next morning, there was one from the night nurse saying Jeff had died that night. The family was doing okay, all things considered. “It was an emotional and poignant night, actually,” she said. “Oliver had us all hold hands and pray over his dad. He led us in prayer. It was pretty incredible.”

I hadn’t given Oliver his dad’s recovery, but I may have given Oliver something to hold onto in the midst of his loss, even if it was just his family’s hands. When I first met that family, I didn’t know what that first prayer would give Oliver.

We don’t have to physically hold hands to make a connection, though it helps. In a circle around a bedside, it often feels to me like our hands complete an electrical circuit. But we are connected in so many ways, and our actions affect others. Maybe we won’t know when we have made a difference, but maybe we just have to live life as if it did and that we do.

Because healing takes many shapes and can take time to find its expression, we often need help to find it. It may not happen when we want it to or when we are there to see it, but we have to keep faith that the capacity to heal is the grace God extends to everyone.

Keep Faith Alive: Healing Happens Even When Recovery or a Fairy-tale Ending Does Not

I hadn’t been working in hospice long when I visited a new patient, “Janet,” in her home where she lived alone. Photos of a young man in uniform lined a shelf. When I asked her about the photos, she told me about her son who had died when he was barely 20. I asked if she had other family. “Yes,” she said feebly, “but I never talk to any of them.”

On my next visit, the social worker and I asked more about family. Janet was divorced, and she was estranged from her daughter. We urged her to let us contact her daughter to let her know about her mother’s illness. She agreed.

I am sure I was imagining a fairy-tale story of reconciliation. Spoiler alert: it didn’t happen that way. If I didn’t know before, I do now that families are complicated and don’t always conform to our expectations.

We did find Janet’s daughter, whom I’ll call “Sarah.” Sarah told me how her mother had always worshiped her brother but always scorned and criticized Sarah. Sarah tried to be worthy but never was. In time, she gave up and got on with her life.

And yet, she agreed to help her mother manage this final illness. She handled all the logistics of her mother’s care and then the move to the hospice house in her final weeks.

As Janet neared death, Sarah was determined to try one last time to touch her mother’s heart. We talked about what she wanted to say to Janet and what she wanted to hear from her. I asked, “And what if you never hear those words, Sarah?” “Then I will know that I tried my best, that I was there for her at the end of her life, even if she didn’t show me gratitude or love. I won’t have regrets. I will know that I tried.”

Sarah never heard the words she longed for, but she experienced healing—not in the way of a fairy-tale ending but healing just the same.

Often healing and reconciliation do happen at bedsides, but healing can happen in many ways. A woman whose husband died at Hospice House volunteered to do weekly clerical work, which helped her connect her loss to a way of giving back. Another patient at the house found healing by being wheeled out to the parking lot where her horses had arrived for a chance to say goodbye. A man in his 40s whose soul mate and hiking partner, a nature lover, died, found that a sculpture helped him heal. His wife had always imagined coming back as an otter, so this sculpture of an otter leaping up as if in a joyful dance helped him to feel her presence.

Because healing takes many shapes and can take time to find its expression, we often need help to find it. It may not happen when we want it to or when we are there to see it, but we have to keep faith that the capacity to heal is the grace God extends to everyone.

Photo by Ian Wetherill on Unsplash

Be Present: Presence Is More Important Than Words

I became aware that an elderly man, “Tom,” in our hospice house just sat in a chair by the window doing nothing and not really responding to his daughter’s daily visits. The social worker, “Bonnie,” took notice first and offered to take him outside in a wheelchair, but he declined listlessly.

He had spent his life logging with a team of draft horses. Out in all weather, he felt more at home with his animals and trees than with people. Bonnie and I hatched a plan. The next day she didn’t ask him if he wanted to go out; she told him he was, and he agreed half-heartedly.

There is a paved path around Hospice House with a slope to the back. It was fall and a beautiful day. Bonnie did a loop around the house—then another and another. She would point out a flower in the garden or the colors on the maple. He only nodded, but something was changing.

I took the next day doing the same, but managed one more loop than Bonnie had. It became a competition in which Tom began to take notice. Each day he brightened a bit, looking forward to his time outside and a few more loops than the day before. We kept him out as long as we could in any weather.

On one particularly lovely day, after the loops had gotten numerous, I took him to our garden to just sit. We didn’t talk. We just looked at the colorful leaves across the parking lot as they swayed in the breeze. It felt like worship. I couldn’t bear to make him go inside, so I called another staff member to sit with him when I no longer could. He died that night, and I long thought of him when I stepped out of the front door. His spirit was too big to be kept indoors. My words were of little use to him. It was my presence that was meaningful and healing.

In a world filled with words, media, and busyness, I think we undervalue the power of quiet presence. Being centered and mindful can bring a holy connection to another person, a gathered group, or to that Spirit within and beyond us.

The day my first husband died, my neighbor saw the police car at my house and came over. He asked what he could do, and I didn’t know. So he said, “I am just going to sit here for a while, so you know I am here,” and he did, for two hours. I learned then how much that meant and that it was something I could do for others. Presence goes beyond words.

The Bible story of Job tells of his misery when everything had been taken from him—his family, his wealth, and his health. Three friends show up and silently sit with him for three days. Of course then they start talking and saying all kinds of unhelpful things, but the three days of sitting was a good start.

A quiet presence doesn’t have to be reserved for big events. Think of small hurts that might be eased with your presence. I know physical presence isn’t as possible right now, but how about a quiet walk? Or sitting outside an elder’s nursing home window? Telling someone they are on your mind? Remember a time when someone just showed up for you, or when you felt a sustaining presence as you just sat and paid attention.

In a world filled with words, media, and busyness, I think we undervalue the power of quiet presence. Being centered and mindful can bring a holy connection to another person, a gathered group, or to that Spirit within and beyond us.

Be Open to Mystery

There is a song I listen to by the Quaker singer-songwriter Carrie Newcomer. In her song, “A Light in the Window,” she says: “I pass from mystery to mystery, so I won’t lie. / I don’t know what happens when people die.” I don’t pretend to either, but from what I have seen, I am convinced there is something.

“Elizabeth” hadn’t spoken or eaten for days. I was new to this chaplain thing and was asked to just sit with her for a while. She looked so peaceful and comfortable.

I sat quietly with her, holding her in the Light, as we Quakers do, and wondering what she was experiencing.

Suddenly she sat straight up, lifted her arms, looked up toward the ceiling and said, “Hello, everybody!” with joy, her face shining. Then she laid back down and closed her eyes with a smile. She died the next day.

I don’t know what exactly happens when we die, but it’s always amazing to witness people who demonstrate they’ve seen something beautiful. I’ve heard so many stories and seen so many things that convince me there is something next. We are surrounded by mystery and need to remain open to all its possibilities and manifestations in our lives—and to those who may see it more clearly than we can.

The author’s husband and a close f/Friend, Robert Noyes, playing the piano.
Photo courtesy of the author.

Say It Now: Don’t Wait until It Is Too Late

In his book The Four Things That Matter Most, Ira Byock, a physician and specialist in end-of-life care, says that before someone dies, they and their loved ones should find a way to say four things: Forgive me. I forgive you. Thank you. I love you.

Hospice patients who come onto hospice while they are still conscious have the opportunity to say what matters most to their loved ones, and to give their loved ones the chance to say what needs to be said.

Because none of us really knows when our own life will end or when we will no longer be able to communicate, we should be telling each other all the time these important things: Forgive me. I forgive you. Thank you. I love you. Especially now when so much is uncertain, take advantage of those moments for love, for appreciation, for healing.

Becoming a hospice chaplain inevitably meant contemplating my own death. I’ve always hoped that it would mimic the beautiful scenes I witnessed. My family and friends would visit me at home or in a hospice house. I would be kept comfortable by skilled hospice staff. My favorite music would be playing, and my loved ones would have the support of social workers, chaplains, nurses, bereavement counselors, gentle and funny aides, and a medical director. Someone would be by my side, as I was for both of my parents when they died.

COVID-19 has brought the cold reality that I could be whisked off to the hospital, away from my loved ones, possibly unable to communicate. I’ve made my peace with that (and prepared the essential packet of medical and end-of-life documentation needed), but I hope it won’t happen that way. Still, the lessons I’ve learned from my patients seem more important than ever.

I believe it is important to live my life as if the things that I do and the words I speak may have results that I can’t guess. I live with gratitude for the large and small gifts this life has given me. I look for healing however it shows itself and try to encourage it in others. I remain open to mystery. And I remember that showing up is more powerful than I might expect.

Cynthia Knowles

Cynthia Knowles, MDiv and a board certified chaplain, worked in publishing and at Massachusetts General Hospital before becoming a hospice chaplain in New Hampshire both in the community and at the VNA Care Network’s Hospice House. She is a longtime member of Friends Meeting at Cambridge (Mass.). Contact: cynthia@iecc.com. This article is based on a sermon Cynthia gave to a Unitarian Universalist congregation in November 2020.

2 thoughts on “Hospice Stories on Living and Healing

  1. I am a hospice volunteer coordinator and write a monthly newsletter for the volunteers. I wonder if I might use some of your stories to share in the newsletter. Your stories have touched my heart and I know they will touch the hearts of the volunteers.

    Thank you,

    Rosy Cunningham

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