Our Hospice Spotlight Volunteer Reflections are shared periodically. Reflections are stories of connection and meaning, presented in the volunteer’s own words. Here is Cathe Kere’s Reflection.
Clancy and His Loving Admirer
Loving a Therapy Dog Inspires Hope in Patient
I have a great story about one patient Clancy and I visited. This patient wanted a visit from a dog, and she only wanted a large dog. She fell instantly in love with Clancy. Although aided by continuous oxygen and monitored by her 24-hour caretakers, the patient couldn’t take her eyes off of Clancy during his visits. She had to pet him constantly and requested that we come every week. So, every Wednesday thereafter, for months, Clancy and I would arrive at her doorstep. One day, she wanted her neighbors to see Clancy, so she took out her walker and walked to the corner, sat down and then waited for people to come by. When nobody stopped, she walked to the other corner until the neighbors finally stopped and chatted with her about the dog and of how beautiful he was to her. The next week she greeted us sitting in a chair outside, and when the neighbors came by again, I took a picture of her sitting with Clancy. The picture was a small gift to her the next time I visited. That was the last time I saw her because she passed away suddenly one week later. Her spouse told me how much she loved Clancy. He said there were days when she would say she didn’t feel like getting up, and he would get ready to cancel Clancy’s visit, but then she would get up and get dressed to wait for him.
I was invited to the service for this patient and there were about 30 people in the room, all of them familiar with Clancy and his effect on the patient. At the family’s request, I went to my car to get Clancy and when we walked into the room everybody turned, looked at us in the doorway and greeted Clancy. It was crazy! So, I walked around and introduced him to the family members and we stayed for 15 minutes. Later, I got a notice that the family made a donation in Clancy’s name to our therapy dog organization. To make that impact on one person, that was just incredible to see!
When I talked with Kurt Rogahn, I sensed some hesitation about sharing the rewards of hospice volunteer work.
One might assume his reluctance was rooted in the sadness related to hospice work, but nothing could be further from the truth. What does, however, lay in the center of Kurt’s heart is service to others, giving back to his community and the innate rewards of those efforts, none of which he perceives as self-serving. He describes his approach to hospice volunteer work this way:
“Sometimes it’s just a matter of being there; the courage to be there really opens up all these other possibilities,” he commented.
Exercising a Helping Hand
Being there for others is important to Kurt and supports his belief of worldly reciprocity. Years ago, when his own father was dying of cancer, geographic distance did not allow for Kurt to be available. Nor was hospice service available to his father. Becoming a hospice volunteer where he lived was a way in which Kurt could make up for it. When pressed to describe how he has changed since volunteering for hospice, Kurt does acknowledge that the work draws upon characteristics that are not necessarily his everyday strengths.
“You can’t help but have that softer side come out,” he says.
Being an active person, leading a fast-paced life and sometimes accused of being blunt by nature (honest yet loving feedback from family members), Kurt believes he has learned to slow down, be present and more tempered with his opinions. He likens his volunteer work to physical exercise, where sensory and intuitive parts of his modest personality, ones that don’t always get a strong workout, build up strength.
This strength sometimes comes from assisting with mundane tasks. Whether it is cleaning an electric razor for a patient or reading the sports section of the paper aloud, Kurt exercises helpfulness.
He also builds his intellect. Drawing upon his skills as a long time journalist and writer, Kurt reminisced about helping a patient finish a book project, completing the unfinished manuscript and then presenting it to the patient’s family. Another patient asked hospice for a volunteer to help him create a series of videotaped messages for his family to view after his death. Hospice assigned Kurt.
Mostly, however, Kurt aims for careful listening, exercising compassion, building connection, and demonstrating genuine friendship with his patients.
“I go in to see a patients and I make friends. I make a friend that happens to be sick and yes, that person is at the end of their life, but if I go in and provide a distraction for that person, that is a good thing,” he says.
Documenting Life Stories
Borrowing on his journalistic talents, Kurt draws people out with inquisitive questions and becomes a new audience for old stories. For him, a simple inquiry, tell me about your family, results in receiving descriptions of a sea of experiences and life memories. What is your favorite book?, another a great question Kurt poses to his patients, often leading to interesting interactions. One elderly woman once asked Kurt to read her beloved series of Christian romance novels aloud. They both enjoyed a laugh over Kurt’s masculine voice portraying the heroine, saying…”He came toward me with a fun sort of glow in his eyes.” These kind of light-hearted encounters are balanced by the more serious. Kurt recalled one woman who wanted to focus her energies solely on the Bible, and with Kurt at her side, they engaged in meaningful theological discussions. Wherever patients decide to venture intellectually, Kurt is right by their side.
From the mundane to the sublime, patients can always depend on Kurt—a journalist at heart with a heart for the journey.
Kurt Rogahn is a hospice volunteer for Unity Point Hospice of Cedar Rapids, Iowa, has been a volunteer since February 2005. A former newspaper reporter and editor, he is a senior proposal writer with Pearson Education in Iowa City, Iowa. He and his wife, Lynn, a retired teacher, have two grown children and three grandchildren.
Hospice volunteering is a natural extension to the work Julie Engstrom has dedicated herself to most of her life, advocating for patients and facilitating communication between caregivers in a hospital setting. She described facilitating “moments of normalcy” for patients in the hospital and now she applies that same skill to patients in the care of hospice, sharing a unique perspective on what she receives from the experience.
One of those perspectives is the importance of honoring the patient by taking a moment to notice and receive the space they occupy
Honoring a Sacred Space
“I feel I need to open my heart when I enter a patient’s room/house, whether it be a bedroom or a living room, I take time to breathe in the photos, medicine bottles, pads, diapers or machines—all are part of their sacred space.” Julie said.
Knowing that a patient has invited Julie, as a volunteer, to share the last phase of their existence humbles her immensely. A tremendous feeling of gratitude fills her heart when she visits a patient, knowing they are giving her a precious gift of vulnerability and love, an act of kindness that permeates into her own relationships with friends and family.
The other gift Julie receives, through observation, is the knowledge that each person dies the way they lived. She describes the process of what is the end of life for her mother-in-law, one of peace, quiet visits with immediate family, and limited material distractions. Simplicity and depth is what she treasured about life, and it is what she wants in the end as well. In contrast, Julie, a gregarious and fun-loving person at heart, wishes for celebration, hugs, upbeat music—a very different experience than the one preferred by her mother-in-law. As individual as these end of life choices are, Julie has learned to honor them all.
What is universal in Julie’s experience however, is a sense of quiet that is inherent in hospice work. The accelerating pace of life and wish to fill every waking moment slows down when Julie visits a patient. This ability to invite stillness in, through silence, smell and even observation is a special gift of simply being present and Julie treasures this aspect of her work.
Julie said, “I believe I’m there to help the families breathe.”
Sometimes these times of breathing allow space for reflection and discovery for patients. Julie described a woman who was struggling with the guilt of burdening her caretaker husband. By providing a space for her to talk, the woman realized allowing her husband to care for her was providing him with the gift of purpose, meaning and an avenue for displaying his deep love and affection. These epiphanies can often emerge from quiet moments of stillness.
Inviting in Stillness
Julie said, “The joy in hospice volunteering comes from opening my heart to vulnerability and absorbing the burden of worry, sorrow or pain of the moment and transforming that energy back into a nurturing, quiet and gentle presence.”
This ability to open her heart and share her nurturing spirit with others is something Julie treasures in her own life. She described the simple act of sitting with her husband and son, saying nothing at all, all the while savoring that time together.
I savored my discussion with Julie as well. Her ability to open her heart and stay wholly present is the special gift she shares with others, especially her hospice patients, taking time to truly honor them in the last phase of their lives.
When I speak with hospice volunteers, I strive to fully understand what it means to be human, exploring end of life experiences, often revealed through patients’ unveiled windows within. These discoveries are beautiful, profound and generally appear in the foreground when peering through the window. However, when I talked with Ann Neumann, her expansive observations unveiled elusive layers of foreground, middle ground and background, all residing in the expansive landscape, similar to features within an artistic masterpiece, such as Leonardo da Vinci’s portrait, the Mona Lisa.
At First Glance, Recognizing Love
At first glance, one notices the beautiful and mysterious face in the famous portrait, a reaction that is similar to the immediate sense of gratitude hospice volunteers feel for the privilege of serving a dying patient. Ann described the universal experience of people becoming “essentialized” near death, a state of being that can alter or readjust their long held priorities and needs. Love is, by far, in the foreground of Ann’s hospice experiences, but it’s not the sentimental love that is so often projected onto the dying.
“I’ve loved and lost beautiful people from every possible walk of life, to a host of diseases. Every one was different and this has been incredibly enriching-just knowing these people who I otherwise wouldn’t. To me, that’s probably the best thing about being a hospice volunteer,” she says.
The word loved is effortlessly integrated within her well-expressed sentiments. For Ann, learning how to love unconditionally is equally present in the foreground of her experiences at hospice.
“In many ways, I learned how to love, how to love unconditionally,”she notes.
Unconditional love for Ann simply means being present–for the moments of listening to a patient’s life reflections, of sitting together in silence, of responding for help when pain levels increase and of participating in family celebrations.
Noticing the Details
However, beyond these heart-warming experiences with hospice patients, Ann noted other aspects, often appearing in the middle ground and sometimes easily overlooked. Ann talked about her own father’s illness and the months leading up to his death. Unlike the Hallmark version of death (often portrayed in the movies), Ann found herself face to face with the stark reality of administering 24/7 sleep-deprived care, hindered with continuous cycles of cleaning, administration and modifications of medications, changing of soiled sheets and preparations of meals. Soon, a sense of helplessness, infused with anger, emerged for Ann as she observed the subtle changes taking place from day to day while realizing that she was greatly unprepared for his death. Ann remembered feeling as if society had let her down, shielded her from learning how to cope with this most basic and universal of human experiences.
“The actuality of death is not an idealized experience…when you acknowledge that someone is going, that they will not be here in weeks or days, that permanence is a kind of knowledge you cannot get any other way. The permanence of death,” she said.
Exploration Reveals Overall Context
After struggling for a year with the circumstances around her father’s death, Ann embarked on an eight year quest for knowledge and understanding, fully immersing herself into hospice volunteer work and scholarly research, exploring religious, cultural and medical aspects related to the end of life. Her journey culminated with the recent release of her critically acclaimed book, The Good Death: An Exploration of Dying in America. While she fully acknowledges the variations within end of life experiences in her book, it is the examination of the overall context, the ethical and moral issues that shape the state of dying in the US today, that are engaged in The Good Death.
“Most important to me, and you will hear it again and again in my writing, is the disparity that exists around end of life care,” Ann said.
These disparities are visible to all who stop to observe: the underpaid and undocumented caretakers; the variations in care quality relative to monetary means, and the limited access to medical services and/or basic health insurance for thousands of people in America. The following profound message remains close to Ann’s heart:
“The way we treat our fellow human being in this country—and who we treat poorly—is an absolute tragedy. I’ve seen it again and again at the end of life. In my book, there are beautiful stories of lovely deaths and lovely people who I’ve known but that’s not everyone-that’s a very small privileged group. When we are talking about end of life care, we should be talking about every one of us.”
Ann’s hope is that we all begin to see the complete picture, observing the subtle layers of foreground, middle ground and background, a death with dignity and respect for all.
As we continue to serve the dying, may Ann’s observations heighten our own awareness and move us to act and influence social change.
Ann Neumann is a hospice volunteer in New York City and the author of The Good Death: An Exploration of Dying in America (Beacon, 2016) and a visiting scholar at The Center for Religion and Media at New York University. Her work has appeared at The New York Times, The Washington Post, The Baffler, BookForum, New York Law Review, Guernica magazine (where she is a contributing editor) and other publications.
Our Hospice Spotlight Volunteer Reflections are shared monthly. Reflections are stories of connection and meaning, presented in the volunteer’s own words. Here is Marilyn McEntyre’s Reflection.
Dementia and Finding Ways of Connecting
My experience with people who have been in various stages of dementia is that it’s a challenge to find a tone of voice, trigger words or some way of being present to them that is soothing. Because it often manifests as anxiety, I feel like the challenge is in meeting them where they are even if it’s just some tactile way. I remember one woman reorganizing jewelry in her drawer, putting the earrings here and the necklaces there and putting them in boxes; These actions somehow anchored her to familiar, away from language into some other way of connecting. That’s a learning curve. It’s like learning sign language.
Finding the Rhythm Within Words
Similarly, I witnessed something interesting when I was visiting my mother in the last years of her life in assisted living. She had a mild form of dementia. At that time we had a program in the English department where I taught where students would visit nursing homes and read allowed to residents. There was a woman who was a neighbor of my Mom’s in the next department. She had been a high school English teacher for many years and one day received a visit from one of these students. Their instructions had been to read anything you want to read, from Dr. Seuss to the sonnets of Shakespeare –just see if they’re responsive or not. If not, read something else. The student had been in a romantic’s class where they were reading Keats so she brought in the Eves of St. Agnes (a very long story poem by Keats). The piece had a definite rhythm, a strong rhythm and my mom’s friend was on the edge of her chair. She was just riveted by this lengthy poem (one that I’m sure many students would go to sleep over). But, she just didn’t budge until the whole thing was done. And, then she responded in a complete sentence saying,“That was wonderful. That is the best way I’ve heard that read for many years.”
The rhythm had some how brought her alive.
A Mother Encourages Understanding, Bringing Life and Death Full Circle
When Marilyn McEntyre and I talked, I traveled into a rich personal landscape, nurtured and sustained by faith, family, literature, art and nature. I also quickly discovered the guiding North Star for Marilyn, the belief that “we all belong to God.” In early childhood, Marilyn embraced her faith, modeled by her missionary parents, and particularly by her mother whom she described as “a one woman hospice provider” (before there was a hospice organization of the kind we have now). Having worked in an infirmary and school for orphans in India, her mother also routinely traveled to villages assisting medical caretakers.
“My mother always had a practical way of thinking about death, aging and loss; this was a huge gift she gave me,” Marilyn noted.
She recalled an early childhood experience involving the death of a pet guinea pig, an incident that exemplified her mother’s “hands on,” yet reverent, approach to life and death. Knowing the guinea pig was carrying multiple babies when she died, Marilyn’s mother set up a little lab table and gently dissected the corpse to reveal how the babies were tucked inside. These kinds of experiences heightened Marilyn’s intellectual curiosity and domesticated death for her, bringing life and death full circle.
Embracing New Avenues
Today, Marilyn finds herself entering into a new season of life, enriched and nurtured both personally and professionally by her past experiences of death and dying. Embracing this season opens new avenues of reflection for her. Having recently experienced the death of her mother and two special mentors. The question Marilyn asks now is,
“How do I learn how to do this next stretch of the journey as the elder, now that my elders are gone?”
An answer came in hospice volunteer work, where she has discovered new life mentors and companions in the patients she is honored to serve.
These people, living into the reality of approaching death, are her teachers now: they mirror back her own mortality and refresh her spiritual landscape. A reminder of the power of simplicity emerges, for instance, in a visit with a 98 year-old woman who has shed all material possessions (except for the mug on the nightstand and nightgown on her back). In this patient she witnesses the beauty of the humility it takes to accept the supportive presence of a stranger, such as a hospice volunteer, when the end is near.
These are times when patients remind Marilyn that we can all be priests for each other, a concept celebrated in Luther’s idea of “the priesthood of all believers.” She talked of two patients who expressed similar fears of dying, both rooted in an uneasy sense that they hadn’t fully forgiven those who had harmed them in the past. What eased their fears was the simple act of listening and of helping them turn their struggles of conscience over to a higher power for resolution.
Marilyn said, “A listening ear, and the conversations we have with patients can often supply a comfort similar to what believers have found in a priest’s anointing at the time of death.”
Marilyn is learning to listen at a deeper level to the peace that is present in a patient’s room. She describes the value of “just being” this way,
“Peace settles on me when I sit in the room with someone who’s releasing life at whatever pace, in whatever way. I get to just be there. Every wisdom tradition teaches some version of being in the here and now. There’s an immediacy of sitting in a room with a person who’s dying and not going anywhere, a summoning back to the present that is a powerful spiritual opportunity.”
Finding Peace in the Present
Recognizing moments of peace, stillness and “just being” are all aspects of coming face to face with the mysteries of life and death. Though inactivity can trigger an overwhelming feeling of uselessness for some patients in their last days, Marilyn has learned from them, and tries to mirror back to them the blessing it is simply to sit and breathe and be together.
Not all moments with the dying lead into these elusive mysteries. Often, Marilyn reminds us, patients become light-hearted and amusing too, in ways that remind her of Rembrandt’s self-portraits painted in his old age, which are surprisingly playful and somewhat whimsical. She recalls patients sharing charming life stories, transporting her to different eras, of riding in horse and buggies and waiting for an ice block delivery. And a memorial service, (unlike one might expect from a lovely and devout Lutheran woman) where, at her request, a rousing rendition of Take Me Out to the Ballgame was sung, a last tribute from a fan honoring her beloved San Francisco Giants.
To Marilyn, all dying experiences fall somewhere along the broad spectrum of the human journey where moments of learning, freedom, sweetness, peace and even amusement surface in the last days, weeks and months of life.
Accepting the Shifting Moments of Life
“On any given day the emotional kaleidoscope can shift and, though all the same facts are there, the design is different. Each day with the dying is a new thing, and each of them,” she reflects, “a gift to be received with gratitude.”
Drawing on her love of literature, Marilyn evokes a line from one of Flannery O’Connor’s letters, “sentimentality is a form of obscenity”.
“I think it is really important not to sentimentalize or romanticize what is happening in death. It always surprises you and it’s always that kind of variety of the variegation of the human comedy,” She said.
“I love the richness of the hospice volunteer experience for exactly that reason,” she adds.
And, undoubtedly, her patients love her too, for a similar richness she embodies while bringing a special faith, love and beauty to their bedside, unknowingly becoming a mentor in return.
Marilyn McEntyre is volunteer for Sutter Hospice and a writer and professor of medical humanities at the UC Berkeley-UCSF Joint Medical Program. For more information visit: www.marilynmcentyre.com
In talking with Dale Childs, it was clear that he invests heavily in the art of listening, not in the conventional way of hearing, but rather through his heart. By doing so, he often sees and trusts in life’s “sacred moments”. This special art of listening is something Dale has cultivated over the years and a talent he uses with hospice patients. Listening was even a part of his entry into hospice thirteen years ago when he felt an inner nudge to find more meaning in his life. What Dale sensed then was a gentle urge to seek out a richer life existence, filling a void that his IT programming career could not adequately fulfill. Ironically, it was through an IT workshop that Dale connected with a director of a newly formed hospice. He responded to her plea for volunteers and ever since, Dale has served in the role of hospice volunteer for several organizations, carrying out home visits and eleventh-hour vigils.
As Dale and I talked more, it dawned on me that his listening heart guides the interactions with his patients too. Whether he hears of a patient’s particular special interest, inspiration or life-pleasure, Dale steps in and uses his creativity to satisfy their interests.
A Post Card Brings Simple Joy
Music was the inspiration for one elderly woman Dale visited. After faltering a bit with tunes from the 30’s-40’s, followed by Frank Sinatra songs, Dale discovered a CD titled “The Dementia Sing-A-Long”; these were the songs that brought peace and happiness to her days. Likewise, photographs of Dale’s Alaskan trip were the key to unlocking joy and awe for another patient. And, a simple post card sent by Dale to his patient all the way from Fenway Park, was the thrill of a lifetime for yet another patient. These intangible gifts, of appreciation and connection to patients are what Dale receives as a Hospice volunteer.
Sometimes, gifts did take on more tangible forms, as in the inscription one patient dedicated to Dale in a treasured book shared between them. It read:
“…Dale, he never came without an appointment and he was always on time. He came for a visit, one I always look forward to, one that always makes my date with him something to look forward to. Keep those cards and letters coming. Thanks Dale”
Listening for Cues in the Music
As an avid hiker, Dale is attuned to the smallest of nature’s cues, whether it be sounds of a gently rolling stream, crickets chirping in the dark night, or wind rustling through a forest. There are similar “sounds” he describes listening for during his visits with patients. One evening, he mentioned sitting with an eleventh-hour patient and in doing so, observed harp music playing via a CD player in the background. While listening, the player abruptly skipped and the music looped repeatedly—that was Dale’s cue that something was changing. He reached over and turned the player off. Only then did the patient’s breathing slow down. Within the silence in the room, Dale felt compelled to reassure the patient that it was “ok” for him to leave this world.
“I pay a lot of attention to circumstances like the CD player breaking. It has helped me validate my belief system, that if we pay attention to happenings in this physical world, there’s important information to be had.” Dale says.
A subtler cue presented itself on one of Dale’s last visits with an Alzheimer’s patient. He described her as non-verbal and experiencing great difficulty remembering who he was. But, there was something special that happened as she looked deeply into his eyes and whispered, “I love you.”
Without any hesitation, Dale said, “I love you too, but we’re always going to be friends, you and me.”
Within a few minutes, he was saying goodbye to her and reminding her that he’d see her in a couple of weeks when returned from vacation—he never did see her again. Acting upon little cues and seizing life’s special moments, is what makes Dale remarkable.
His sense of curiosity contributes to his patient interactions too. Noting his curiosity when the first laptop computer reached the market, he talked of a similar interest in the mysteries that surround death, especially those associated with his mother’s death in 1989.
“I was not able to be at my mother’s bedside when she died. I wanted that experience and yearned to understand why I felt this way.” Dale said.
Today, he is less afraid of death, having seen other people die peacefully within the Hospice environment. And, he wonders aloud about how best to communicate to others what death is actually like. He speaks of the experience as remarkable and profound.
Perhaps the best way to embrace life and death is to simply to follow Dale’s lead. I feel certain he would encourage us all to listen carefully…with our hearts.