Category: Volunteer/Staff Stories

Learning to Be With the Dying

Posted on by Hospicare

We live in a death-denying culture making it difficult to talk about death, to know how to be, and what to say, in the presence of the dying. My mother’s hospice team in Maryland were my first teachers not only about dying, but as it happens, about living too.

I found all of my interactions with the team quite remarkable and unlike anything I encountered with medical and nursing home staff during that period of her life. Only later did I realize I was responding to the quality of their presence—being grounded in the moment, open to whatever happened and completely authentic in their responses.

That quality of presence is the thread I followed from my mother’s death, to volunteering with Hospicare in direct patient care and sitting vigil, and more recently, to completing the Contemplative End-of-Life Care (CEOLC) Certificate Program for health care professionals and hospice volunteers.

The program integrates the spiritual dimension of dying and death with the practical aspects of hospice and palliative care. The instructional methods included individual study, online interaction with other students and instructors, an 8-day residential retreat, a daily contemplative practice, self-reflection and journaling.

We built skills for communicating about dying and death; helping patients find new meaning; facilitating the process of resolving unfinished business; and supporting the bereaved. We explored different cultural attitudes, religious beliefs and practices about dying and death. We examined our own attitudes about death and explored ways to prevent burnout.

At the heart of the program is the cultivation of compassionate presence—referring to how we are when providing care—being in the present moment fully attentive, receptive and responsive to patients and their families.

“Extending our compassionate presence to a fellow human being is a simple act. There is nothing special about it. It requires a willingness to be aware, open and loving. This is not always easy. We are required to drop our habitual ways of doing things and any agendas we may have… We may think that we can do “compassionate presence” by assuming the right outer appearance, … The truth is, we cannot do “compassionate presence”, we can only be compassionate presence.”

—Kirsten DeLeo, CEOLC Instructor

The course took me on an incredible personal journey and provided a very useful set of skills to integrate into my work as a hospice volunteer. It also reminded me of the importance and value of being fully present in the moment, the need to be comfortable with silence, and the power of truly listening not only when we attend the dying, but at all moments and in all situations.

Angela Mennitto is a Hospicare patient-care volunteer. This article about her experience previously appeared in our e-newsletter.

We Are Doing Profound Work

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by Lisa Schwartz, RN

The first time I visited Hospicare was during a clinical rotation during my last semester of nursing school. As soon as I walked into the Residence, I knew how special it was and that one day I would work there.Three long years later, after going home to help my parents,then working on the fourth floor at Cayuga Medical Center, I am now a nurse in the Hospicare Residence.

I feel proud to say I work at Hospicare. I haven’t tired of hearing how moved people are by what we do, by the kind of care we give. I believe we are doing profound work in our little six-bed Residence that is really a chapel in disguise.

One night I held a patient’s hand as he died because his wife and daughters were not there. The gratitude they felt that he did not die alone, that someone sat by his side as he left this world, made me weep. I was the one who got the gift. Sitting with him was a privilege.

Sometimes when I am tired or my back hurts, I forget the bigger picture of what we do within the Residence walls. I forget that we have created a place where people come to live as they walk toward the end of their lives. I forget, in those moments, that every day I come to work and tend to my patients is an honor that is almost indescribable to anyone who doesn’t work here.

How can I explain what it means to wash a patient who has died, how the tenderness of it can bring tears to my eyes? How can I describe how holy and sacred this work is? We are there to care for those who are loved and adored and can no longer be at home. They are placed in our hands with trust and the hope that we will do what we do day after day after day. At the end of my shift, I tiredly walk to my car knowing we have all worked hard to make our patients comfortable and to provide a place for them to gently lay their heads,and that we will do it all again tomorrow.

Lisa Schwartz, RN, was a nurse in the Hospicare Residence when she wrote this essay about the rewards of her work with patients and their families.

The Heart of Hospice Social Work

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Learning the Wisdom of Humility

by Jeff Collins

I was a social worker for Hospicare for 22 years, and I truly feel these years at the agency have been a profound blessing. There are many facets to this sense of blessing, but I think the deepest and richest part has been the way it has helped me see another human being as a fundamental mystery. I am coming to learn that it is my job to meet that mystery, to learn about it as best I can.

At the same time, I have a deep-seated tendency to think I know what is best for another. So much that is behind my sense of knowing what is best for another depends on my desire for him or her to live and die, and to experience loss, in a way that I am comfortable with. Now I begin to see that when I meet another person, I am meeting an unfolding world, with all of its history and momentum, its joy and pain and confusion and wisdom. And I have slowly started to understand the wisdom of an increasing humility.

Very early on in my work at Hospicare, I spent a year doing bereavement counseling with a woman who had just lost her husband. We would meet weekly, and she was generally in a state of desolation, living the question, “There is nothing for me in this life anymore, why would I want to go on?”

For quite a while I found myself trying to convince her that of course she should go on in this beautiful life of ours. She put up with me and maybe benefited from my way of being with her. But in one particular session, it finally dawned on me that I really knew nothing about this woman and her real situation. I was too busy trying to convince her of my point of view. But what did I really know about her, about the real meaning in the arc of her life, about why she was in this world and when she might be done with this world, even if her body continued to survive? I was trying to convince her of a point of view, like a lawyer trying to win an argument. So to some degree a real sense of humility landed in me, and I was much more able to meet her in a much more open way.

This gift of humility and the ability to connect with patients and their families has come to feel like the heart of my “craft” as a hospice social worker. It has lead to a deepening sense of coming home into my own life, and into life in general. All the wonderful, beautiful Hospicare patients I’ve worked with through the years have led me to this place in my own development, and I am grateful.

Jeff Collins was a social worker with Hospicare for 22 years until his retirement in 2014. He continues his involvement as a volunteer and member of our Ethics Committee. This article was originally written for our February 2014 e-newsletter.

Fond Memories

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A Long-time Hospicare Supporter Remembers the Early Years

by Marlaine Darfler

In early 2013 when I read an article about Hospicare’s 30th anniversary, it reminded me of my early experiences with the agency. I clearly remembered being 28 years old, pregnant with my first child, and sitting around a table in 1982 with an impressive collection of professionals from the social work and medical fields of Tompkins County. We were discussing the feasibility of opening the first free-standing Hospice in New York State.

Of course, Nina Miller (Hospicare executive director at the time) was present, inspiring the pack. I was there as the director of Tompkins County information and referral services and as the past aging services specialist through the Tompkins County Office for the Aging (COFA). I may have had titles, but not yet a lot of experience. I was in awe of my older colleagues, and I also think I was more focused on the life flipping around in my belly than the task at hand.

There were several years between those exploratory meetings and the realization of the dream. During that time Hospicare continued to provide services to the community through its offices housed up near the hospital. Although I had stopped my paid employment at that time to care for my baby, those months on that committee affected me deeply, and I knew Hospice work was a calling for me. So I packed up my baby in his carrier and traveled to the Hospicare offices where I first served as the volunteer volunteer coordinator and then later as the volunteer bereavement coordinator. In between, I did a lot of office organization. Paid staff at the agency was a rarity in those days.  

Quickly after baby number one, came baby number two and then baby number three, at which point I took a leave from my volunteer work at Hospicare. I was not, therefore, directly involved with the agency during and right after the building stage, but I followed the development and eventual opening of the Residence with great pride.

Years went by and I returned to work as the social worker at Kendal at Ithaca. There I quickly involved myself with Hospicare again, becoming the liaison between Hospicare and Kendal. A few years later I took a different path and embarked on the journey of massage school. The day I passed my NYS Boards I called up Nina Miller and said, “I’m ready!” Now, as a licensed massage therapist, I have had the honor to bring that skill to Hospicare as a volunteer, and the journey is nowhere near the end, at least as far as I know.

Marlaine Darfler, LMT has been involved with Hospicare since our very beginning. In 2013 we recognized her long-time commitment by presenting her with our Hospicare Volunteer Honor.

I was a Designated Hugger

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by Kira Lallas, LMSW

As a bereavement counselor for Hospicare, part of my job is to reach out to loved ones of those who’ve died on hospice services. This can mean coming in to contact with all kinds of people, from many backgrounds, with a variety of needs and temperaments at a very vulnerable time of life.

It is important to be open and to let people know I genuinely care about their well-being as they face loss, as well as to be sensitive to people who don’t want to open up and may not want to share what they’re facing. So my approach is direct and responsive, ready to be present with people and cautious to let them be if they’d like.

When I was a hugger for Women Swimmin’, my job was to greet swimmers as they came out of the water after their swim, to embrace, congratulate, and thank them. As the first swimmers came in, I could feel a similar sense of cautiousness about immediately hugging people that I might have not met before – did they want to be hugged? Was that too direct or close for some? Should I really hug everyone?

But as the women actually climbed out of the water onto the dock, excited and proud, smiling and sometimes crying, I too became excited and proud, and was smiling and sometimes crying. I felt so moved by these hundreds of women who had spent long weeks or months asking friends, family, and strangers for donations, readying their bodies to make the swim, and readying their hearts to feel whatever they might in honor of one or many loved ones who’ve died.

Needless to say it was both fun and moving to be a hugger at Women Swimmin. And, as so often happens when offering families support: what seems like Hospicare giving to patients or families is in fact others truly giving to Hospicare, by sharing such a special and intimate time of life with us. Instead of giving hundreds of hugs that Saturday in August, it turned out I received them.

This article was originally published in Hospicare’s September 2012 e-newsletter. At the time, Kira was the Hospice and Community Bereavement Counselor. While she is no longer in that role, Kira continues her involvement with Hospicare as a per diem social worker and occasionally leads special bereavement groups. She’s also continues to support Women Swimmin’ for Hospicare.

Finding Comfort In Everyday Things

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When a Mother Dies

Three months after I started working at Hospicare my mother died of complications from Alzheimer’s Disease. I thought I would be prepared for her death. After all, I had been grieving the loss of her for years. It had been a while since she had recognized me and even longer since she had remembered a birthday or initiated contact. But I was not prepared.

A friend whose parent had died of dementia told me, after death, memories of the disease fade and recollections of the person as she was resurface. I was skeptical, but I have realized that my friend’s insight is true. Now that I’m not confronted by the stark reality of my mother’s Alzheimer’s, in my mind’s eye she is the younger, alert, capable and loving woman she always had been. That has eased the loss of her.

I have found comfort in small everyday things: wearing jewelry that was hers, making a favorite family recipe. On her birthday and the anniversary of her death, I wear her favorite color, blue. Mother’s Day is still tough for me. While she was alive I could still reach out and connect on some level. But now Mother’s Day is a hard-to-avoid reminder that I no longer have a mother. I have found ways to cope. Hospicare’s grief support group provided an outlet for my grief and let me know I’m not alone. And every May since my mother’s death I get blue hair extensions. Mom would probably have been horrified by them. But for me the extensions have become a fun way to remember her on Mother’s Day.

Playing for the Dying: A Poignant Journey and a Sacred Experience

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When people learn that I play therapeutic harp for Hospicare’s patients, they are often surprised. Usually they imagine the music is a performance or entertainment. The truth is that the music I play at patients’ bedsides uses the latest understanding about how sound affects human physiology. Its purpose is to help patients cope with end-of-life physical and emotional distress. There are often no recognizable tunes. As I play, I tailor my playing to uniquely support each patient.

 I am a certified harp therapist and a candidate for certification in music thanatology (music for the dying) with the Music Thanatology Association International. That means I have professional training in the special needs of the dying. I also follow a long tradition that has been implicitly understood by mothers the world over: music offered with love is a kind of human medicine.

Usually I visit patients in their houses, but I will also play in hospitals and skilled nursing facilities—and, of course, at the Hospicare Residence. Research has shown that the sound of the harp acts upon the human parasympathetic nervous systems. It can lower our heart rate, breathing rate, blood pressure and the level of a stress hormone called cortisol. When this happens for a dying patient, they become calmer and more restful. Often their physical symptoms, such as pain, restlessness, agitation, sleeplessness and labored breathing, improve. 

When I’m playing, I use the elements of music to address certain symptoms. For instance, by working with tempo and rhythm I might ease distress of a patient who is having problems breathing. I determine what will help a patient from moment to moment as I play. 

The sound of the harp can also help patients suffering from emotional or spiritual distress. That’s what happened with a patient named Debbie. Debbie had a lot of spiritual conflict that was causing her anxiety and fear. I played for her many times over the course of weeks, and each time she would become calm and contemplative as I played. Then Debbie’s health declined sharply, and her family called me in to play for her in her last hours. She had been unresponsive, yet as I entered the room, she smiled when they told her I was there.

I played while Debbie took her last breaths, then continued to play for her family members who were gathered. Her passing was calm, and her family members later told me they felt the music gave her permission to die. I don’t know what she really felt, but her family was sure the music helped her with the death process and eased her spiritual fears, and that helped them feel at peace, too. 

Helping ease the distress of patients like Debbie and her family members is why I do this work. Playing for the dying is an amazing and often poignant journey. It is a very intimate, sacred experience, especially in the final hours. There’s a sense of time stopping at those moments. You’re not in the world’s time—you’re not where time is measured by appointments and all the other daily minutiae. Something mysterious is happening that’s not graspable, and we are following it, perhaps like a midwife might follow the delivery of a baby. 

As a musician, working with the dying is some of the most profound work I do.

This article originally appeared in our Hospicare print newsletter in the spring of 2016.

It’s an Honor to Volunteer at Hospicare

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by Cheryl Jewell

I started volunteering at the Nina K. Miller Hospicare Residence in April 2012.I have learned something special from each individual I have encountered.I have been moved by the look in patients’ eyes when I have held their hands and they are unable to speak. I have sat next to others who were unconscious, or who could no longer speak and were unable to open their eyes. I have put my hand on top of their hand and have felt their heartbeat slow down or their hand twitch slightly as they manage to just barely move a muscle. Just bringing a patient a meal or a beverage is  rewarding because they smile or say thank you, and I know they feel loved.

The work I and other volunteers do helps the Hospicare staff as well. Volunteers help make staff members’ jobs easier so they can concentrate on the professional care they are qualified to give, while we can focus on the volunteer work we’re able to do.

Every minute I have volunteered with Hospicare I have learned more about myself and I’ve learned about the patients I have been with.Some patients have told me about their experiences living though World War II or Vietnam. Many have shared cherished memories of all kinds with me.

It is truly an honor to work with Hospicare and to be involved in a patient’s life during their last days.

Losing My Mother and My Touchstone

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How support groups brought consolation

By Edie Reagan, M.Div., LMSW

Late one autumn afternoon, some years ago, my mother died.  Although I had experienced other losses—that of a brother and a much-loved sister-in-law— the death of my mother struck me at my core, in a way that I had never before experienced.

She was an anchor in my life—the touchstone that I would return to, again and again, to remember who I was, where I came from, and what was most important in life.

Soon after she died, I remember feeling like an astronaut, drifting aimlessly in space, one whose lifeline to the “mothership” had been abruptly chopped in two. I didn’t know who I was or how to “be”, without her. The morning after she died, I awoke at 4:00 a.m. and found myself in a shockingly bleak place. It felt very dark and cold and empty. I remember thinking to myself, “This must be the grief that I have read about. Now, for the first time, I am experiencing it.”

Several months later, I walked through the doors at Hospicare, looking for help. (This was long before I became  a member of the staff here.) I sat down among a circle of strangers, but, by the time I walked out of the room that evening, I felt a deep sense of kinship with each person there. These people really understood firsthand, what I was experiencing. And what a precious gift that was. It was a great source of consolation and strength, just to be together with others who had also lost a loved one—others who were also trying to find their way through a morass of intensely painful feelings and reconstruct the pieces of their lives.

This sense of “kinship” with others is a hidden grace that we may discover within the journey of grief. We can become aware, perhaps for the very first time, that loss and grief are an inevitable part of every person’s experience. And that realization can bring us a sense of comfort and connection, even in the midst of our heartache.

 

Edie is Hospicare’s Spiritual Care Coordinator.