Letter to a Hospice Volunteer

A worry that is often raised by volunteers is that they aren’t having any impact, or that they aren’t being a “good” volunteer. This concern was raised by one of our Zen Caregiving Project volunteers who served at Laguna Honda Hospital’s S3 Palliative Care ward. Alistair Shanks, our Volunteer Program Manager, wrote this response to the volunteer, which touches on the very core of our approach to serving at the bedside. It has been edited to remove certain personal references and protect privacy.

Dear _______,

Your doubts are not an indication that something is wrong but a natural reflection of the difficulty of this work. Doubts are an invitation for self-reflection. Being with another human being in a volunteer/patient relationship is simultaneously an artificial construct and a natural, fundamental, human undertaking, a meeting of two spirits. Volunteers process and navigate this relationship in a variety of ways. And it is rarely easy. 

Very often we don’t know what our impact is on the people we serve. The residents of S3 Palliative Care Ward have all kinds of conditions; many have varying degrees of cognitive impairment; all are struggling in one way or another with disruptive life transitions, fear, uncertainty, and doubt. What we offer to them may be nothing more than our simple presence, perhaps a brief moment of connection, feeling less alone for the duration of the visit. Or it may be much more.

I frequently point out that volunteering is about relationships, that what we do at S3 is form relationships and I believe that to be true. We meet people, we get to know them a little, become witnesses to their stories, and in some cases form deep bonds of affection and regard for them. We even fall in love with them. But we are still volunteers, constrained by the role.

The precise nature of the role of volunteer is one that I have reflected on frequently and its complexity still surprises me. We are not friends, nor are we family. This gets to the heart of the question of the role of a volunteer. We are neither/nor. We are not friends because we do not have a long history, common experiences, and social connections that bind us. We meet them as they are, seeing only a sliver of a long and unimaginably rich life. We do not have the obligations of friendship though we should always strive to be constant, reliable, trustworthy, and kind. We make ourselves available emotionally in the way we want our friends to be, but there are lines we do not cross. One of those lines is that of reciprocation and expectation. We do not expect to be able to rely on the people we serve, to meet our needs or to be available for us. We may even be met with rejection or dismissal. In this sense there is not the customary social contract. 

This is not to say that deep, meaningful relationships of true tenderness, regard, and even love  don’t develop. They absolutely can and do, but they are circumscribed by ethical constraints. We cannot give or receive gifts of any value. We don’t give advice. And perhaps most significantly, our contact is limited to one regular five hour shift per week. 

The act of sitting at the bedside of someone who is terminally ill is incredibly intimate. It is a privilege. As volunteers, we are given the opportunity to interact with strangers in ways that are profound and rare. It can be painful, gratifying, surprising, and deeply nourishing. But we can’t necessarily know what our impact has been on the people we serve. This may be the most important lesson. Our actions will have consequences yet we are not often privy to them. It always reminds me of the metaphor of casting a stone in a pond. The ripples fan out in concentric circles eventually reaching all of the shoreline. We don’t know how our ripples will impact a life after our contact with someone has ended. 

Part of the practice of volunteering is the ability to engage in self-examination, to look deeply at our own struggles, doubts, and edges. This is what we do in shift change meetings and is a critical aspect of the volunteer experience. It is the self part of mutuality and it is the practice of self-knowledge that in my mind is the cornerstone of spiritual practice and inquiry. Being vulnerable in this way and verbalizing it in front of peers is a way to see what is true for us but just as importantly allows the people who witness us to feel comfortable doing the same. Vulnerability begets vulnerability. Everyone is served. I have witnessed you doing this, so thank you for being a model for your fellow volunteers in this way.

Thank you for your service to the residents of S3 and keep in mind you may never know the impact you had on the people you visited but I can assure you it made a difference.  As it says in the Tibetan Book of Living and Dying, “Whatever we have done with our lives makes us what we are when we die. And everything, absolutely everything counts.” I believe this to be true. People so often despair that they are not making a difference, that what they do is not enough. I take the opposite view. I believe that everything we do matters; it all makes a difference; it all counts, a smile, a kind word, an acknowledgment. Thank you for the difference you have made.

Webinar on Heart In Hands

In this session, Irene Smith shares the hand-heart connection through guided meditation and self-comforting touch techniques to return compassion and tenderness to oneself. This session ran on July 22nd, 2020.

Webinar on Reopening With Healthy Boundaries

In this session, Mary Doane introduces the use of healthy emotional boundaries and shares how to use mindfulness to maintain healthy boundaries and increase feelings of safety and empowerment in these uncertain times. This session ran on July 8th, 2020.

Webinar on Reawakening Your Values as a Professional Caregiver

In this session for professional caregivers, Roy Remer introduces techniques for reconnecting to the values that led you to caregiving and guided you in the work. Learn how to reconnect with your values, build resiliency, and rediscover your compassion for self and others. This session ran on June 16th, 2020.

How my volunteer experience helps me during the pandemic

On March 2nd, Laguna Honda Hospital, where Zen Caregiving Project volunteers have served for over 30 years, announced volunteers would not be permitted on campus indefinitely due to COVID-19. In my third year as a volunteer, that meant I would not gather with my shift mates at 9 AM the following morning for meditation and check-in prior to my regular Wednesday morning volunteer shift on the palliative care ward. Soon afterward, our family’s school district announced that Friday, March 13, would be the last day of school for our three kids meaning we had to manage two weeks of improvised homeschool before the originally-scheduled Spring Break. 

First and foremost I am grateful for our safety and health. In addition to this feeling of gratitude each day since then, I have awoken acutely aware that I and my family members are grappling with how to handle the uncertainty we are facing at so many levels. Will any of us get sick? Will any of our family members get sick? Will we be okay financially? When will this end? Will there be a vaccine? Why aren’t our leaders doing more to protect healthcare workers? If everything is canceled, what are we supposed to do?

For my family, our busyness in our “normal” lives had given us a false sense of control and purpose. Our lives had been filled with non-stop “doing” and whether we liked it or not, we were now being pushed, kicking and screaming, to exist in the present – to simply be in the absence of all of our normal things to do. And it has been really difficult.

One of the precepts that guides our practice as volunteer caregivers is to “cultivate don’t know mind.” The idea is that most of us in our daily lives are strongly identified with our rational thinking minds and that our efforts to impose control and certainty limit the possibilities of what a moment may hold. As Frank Ostaseski, Zen Caregiving Project Co-founder says, “don’t know mind is one characterized by hope, curiosity, and wonder. It is receptive, ready to meet whatever shows up as it is.” 

So in practice, this means that when we enter the rooms of the residents at Laguna Honda Hospital, many of whom are suffering from chronic and terminal illnesses, we leave our ideas and judgments at the door. Being open to what comes when we sit with residents at the bedside means meeting them with an open heart. Letting our rational mind guide us narrows our vision and limits the possibilities of what we will consider. When we meet residents with “don’t know mind,” we can be an open-hearted witness to their experience, whether it is one of joy or suffering. 

While I have had this idea of myself being gradually immersed into a practice of mindfulness over the past three years, the last four months have felt more like a dunking; if there has ever been a time to focus on the present and practice “don’t know mind,” this has to be it. I am practicing letting go of judgment and opening my heart to the possibilities that could emerge. It’s become more clear than ever that the present moment demands our attention, and it is a subversion of our creativity and potential to use our precious human energy to regret the past or worry about the future.

So now as my family and I continue to wake every morning with more questions than answers, I draw upon my training and experiences at Laguna Honda Hospital to be more comfortable saying “I don’t know” when I’m asked when soccer practice will start again, when we can visit Grandma and Grandpa and our friends, and when Coronavirus will be under control. I feel moments, even briefly, of lightness and relief when I am able to experience the freedom of opening my heart to the possibilities. 

When our volunteer community gathers on Zoom to share how each of us is bringing our practice to bear on the current situation, I feel immense gratitude for the wisdom and compassion of our shared community. And being able to bring the openness of don’t know mind to this present moment of conflict, suffering, and overwhelming loss that we are witnessing is how I remain grounded to find hope as I face what the next moment will bring. I don’t know what it will be, but as I’m continuing to learn, despite all of my planning and our always-full calendar, I never did, as none of us ever do.

Why I support Zen Caregiving Project

Nancy Wakeman has been a supporter of Zen Caregiving Project for over 25 years. Here we explore her relationship with the organization, why she continues to support us, and her thoughts on the organization’s impact.

Nancy first heard about Zen Caregiving Project, then called Zen Hospice Project, in the early 1990s. It was a time of change and transition for her: she had lost two friends over a short period and had spent time caring at home for her father who had a stroke that was eventually fatal. During this difficult time, Nancy started to explore meditation and saw an announcement for the Zen Hospice Project Volunteer program, which combined her desire to explore and process her loss, her interest in meditation, and her drive to help others.

After completing the 40 hour Volunteer Program training Nancy volunteered for a year with Zen Hospice Project in the palliative care ward at the Laguna Honda Hospital. When asked what she had learned from the experience she shared her three main takeaways:

I learned a lot. I learned that everything changes in life. Even though I often assume there is stability in my life, I know that everything is still always changing.

I learned the value of being in the moment. And although you can’t always be in the moment, I am now more aware of when I’m not. When I am not being present to what’s going on right now I can become more judgemental and opinionated. When I am in the moment, I know everything is as it is, and I don’t feel I need anything else.

Finally, I learned the power of being with other people. We are all in life together and in a way, we are all one, even though we are all different.

Nancy has continued to support and donate to the organization as it has evolved and changed. She volunteered in the kitchen at the Guest House care facility, later supporting the organization as we closed the Guest House, leading to a greater focus on the education program and volunteering. When asked what moves her to continue to donate to the organization she shared:

I think sitting with people who are dying is really important work, as is supporting caregivers. When my father had a stroke, my mother and I cared for him at home with the support of a nurse. During the day it was my mother and I who cared for him, moving him in his bed, dampening his mouth with water, cleaning him. I understand first-hand how challenging caring for someone you love can be and how essential support is to those in that role.

It is so important to provide resources to caregivers because we, as a society, are reliant on having people in the community who are willing to provide care.

We’d like to take this opportunity to thank Nancy for her financial support of the organization across the years, her engagement with our mission, and her support of our staff and work.

Webinar on Mindful Touching as a Means of Comfort

In this session, Irene Smith presents mindful practices of self-touch to nurture and support you in times of difficulty and uncertainty. Mindful Touching as a self comforting tool can be grounding, centering and nurturing as well as easily integrated into any daily routine.

Webinar on Loss and Grief as Initiation

Loss and the natural grief that accompanies it can be one of life’s primary transformational experiences.  In this session, Roy Remer explores how the pain and poignancy of loss can also teach us lessons which may be of benefit to others in our community. The session includes short meditations, opportunities for inner reflection, and guided exercises. 

This session was run on May 23, 2020, as part of Reimagine: Life, Loss, & Love, a Worldwide Virtual Festival on embracing life, facing death, and loving fully, during COVID-19.