For years, Zen Hospice Project has garnered praise for reimagining the end-of-life experience for both the living and the dying. Guided by compassion and a commitment to service, Zen Hospice Project has helped many San Fransisco residents die in comfort, and they continue to educate caregivers across the globe on how to provide mindful, loving end-of-life care.
Perhaps the most well-known of Zen Hospice Project initiatives has been their Guest House. This residential hospice program garnered media attention over the years and was most recently featured in the Oscar-nominated End Game. This Netflix documentary offers a glimpse at the impactful, high-touch care provided by Zen Hospice’s interdisciplinary teams to those nearing the end of life.
After closing the doors of its Guest House last June, many have wondered what’s next for the organization and how they can best support Zen Hospice Project. End Well recently had the pleasure of talking to Roy Remer, interim Executive Director of Zen Hospice Project who shares the history and mission of the organization, the ways they continue to serve caregivers and the terminally ill, and how the End Well community can contribute to their mission.
What is Zen Hospice Project?
Zen Hospice Project (ZHP) is a non-profit organization, founded in San Francisco in 1987, that is dedicated to the mission of improving the experience of palliative and end-of-life care for as many people as possible. Since its founding, the organization has been recognized as an innovative leader providing care for those facing advanced illness and for their loved ones, while also educating and supporting an ever-growing community of caregivers worldwide.
What is ZHP’s mission?
We see caregiving as a significant and deeply human service.
Our work is grounded in practical expression of the universal spiritual values of compassion and service. Zen Hospice Project approach reflects a three decades-long association with contemplative traditions and practice.
How has ZHP’s mission shifted since its inception?
Zen Hospice Project was founded through a grant from the San Francisco Zen Center in an era when San Francisco was coping with the AIDS crisis and an influx of Southeast Asians who did not have access to adequate end-of-life care. Zen Hospice Project was founded with the goal of providing compassionate care for people who were stigmatized by their identity and coping with homelessness. From these founding moments, Zen Hospice Project’s mission to bring compassionate human-centered care to as many people as possible has only grown to include more and more people.
Today, our focus is on continuing to provide training and support to caregivers and volunteers through our Mindful Caregiving Education (MCE) curriculum and our Volunteer Caregiver Program. We are focused on and committed to making a meaningful difference in how family and professional caregivers, and our volunteers, are prepared and supported to provide compassionate palliative and end-of-life care.
We were saddened to hear that the guest house closed last year. Why did this happen?
Yes, this has been a huge loss for us; a really big change. After nearly 30 years of providing residential hospice and caregiving support to the dying and their family and friends, Zen Hospice Project ended caregiving services at the Guest House in June 2018.
The residential hospice program was a one-of-a-kind environment that functioned outside the traditional healthcare reimbursement process, which made it dependent upon not only grants and donations to sustain operations, but also referral and reimbursement partnerships.
When our partnership with a local leading medical center ended, we searched for another partner. We came close to establishing a new partnership, however the process took longer than expected. Despite many generous donors in our community who helped us sustain operations until this year, ultimately, generating revenue to maintain the level of care that we were providing became unsustainable, especially in the face of rising costs.
Do you plan to re-open in the future?
We have no plans to reopen a care facility in the near future. Our focus will be on our Volunteer Caregiver Program at Laguna Honda Hospital and new sites of service, and our Mindful Caregiver Education program. This is where we believe we can make the greatest social impact.
To ensure the success and longevity of these programs, the Guest House was sold. This allowed the organization to pay off debts incurred in an effort to keep the facility operating until a new partnership was secured. The sale also provided for an operating reserve to sustain the organization into the future. If the reimbursement landscape for residential hospice were to change in the future, we would consider trying to recreate what we had at the Guest House.
The loss of our beloved Guest House has had a profound effect on our internal and extended community. The Guest House was not only a care facility, but it was our home. We are still very much in a process of reestablishing who we are without our home.
But most importantly, this transition has not changed our mission to share our model of care with as many people as possible through MCE and the volunteer program. If anyone in the community has questions about our transition through the Guest House closure or what’s next for Zen Hospice Project, I welcome emails to me directly at firstname.lastname@example.org.
What is the ZHP approach to providing palliative and end-of-life care?
Our approach is grounded in the contemplative practices of deepening awareness, cultivating an open heart, and accepting change and death as natural parts of life. In the context of hospice, death can be painful and sad, but it is not a problem to be solved.
We train caregivers in learning how to connect deeply with the persons whom they serve. We support healing and curing, however our focus is on cultivating a quality of presence that is not bound up in attachment to outcome. The practice of cultivating presence and acceptance of things as they are provides space for the people we serve to evolve and grow spiritually even as they approach the end of life.
What is mindful caregiving?
Mindful caregiving is the awareness that everything changes and while change can be painful, it is part of the human experience. It is a quality of presence where the caregiver notices when he or she becomes distracted and is practiced in returning attention to the recipient of care and task at hand. It is infusing the caregiving experience with prosocial emotions, which in turn invites deep human connection. It is witnessing without attachment to fixing.
How does ZHP support the caregivers/family of those nearing the end of life?
When we sit with caregivers and family members of those nearing the end of life, we hold space to express the difficult emotions that often arise when witnessing a loved one approach death. We listen without judgement or solutions. We model kindness and openness. We accept the messiness of family dynamics and do not turn away.
If requested, we will offer ways of connecting with loved ones that support the process of dying. It may as simple as adjusting a pillow, or as profound as saying something you’ve never allowed yourself to say before.
In what ways can we better support the dying and help to provide comfort?
We can help people feel less alone. Without attachment to the ways things were, we can help those we serve be present to their current circumstances. If we can be with people in the present moment, free from the complications of the past or without anticipation of what comes next, we can experience loving presence. In fact, when we are truly present, there is no room for anything else; just love.
For some, a hand to hold is comforting. For others, we simply listen. It can be extremely helpful to elicit stories from those who are moving toward death. If we can show up authentically with the intention to be with whatever suffering shows up, our presence may comfort. And we accept with no less of an open heart that when it doesn’t, it doesn’t.
What new opportunities is ZHP exploring to continue supporting the community?
Zen Hospice Project is working now to augment the offerings and availability of Mindful Caregiver Education for family, informal, and professional caregivers. Additionally, we are working hard to increase awareness of and accessibility to our curriculum through improvements such as upgrading our website, increasing scheduling flexibility for our courses, developing new curriculum, and offering online introductory courses on a donation basis. Additionally, I am personally focused on establishing custom partnerships with health-care providers to distribute mindful caregiver courses to their member family caregivers.
We are currently pursuing opportunities for our volunteers to serve at new locations in San Francisco beyond Laguna Honda Hospital in order to bring our model of care to more palliative and hospice care residents and their families.
Finally, we continue to share what we learned from our experience of operating the Guest House facility. It always served as an incubator, inspiring others to open their own residential hospice houses. We trust that this legacy will continue.
We are eager to share our 31 years of experience and to collaborate with the End Well community and beyond. I invite this community to please reach out to me with ideas for collaboration, custom courses, and ways to partner to improve caregiving and end of life experiences for everyone.
Given the organization’s longevity, what would the team like to share about what they’ve learned about the end-of-life experience?
Well, collectively we have learned a lot. We have impacted many over the years through our programs. The end of life experience presents an opportunity for profound growth and connection for both the one who is dying and family, friends, and caregivers. It can be a healing time whereby we can experience the deepest sense of connection we’ve ever had. It is true that dying can be messy and painful, yet if we can train the heart and mind to open to the experience, it can be expansive.
From my own experience, I know this to be true for the ones witnessing the death of a loved one, and I trust it is true for the one who is dying. I’ve learned that taking death on as a lifelong teacher can enhance one’s sense of well-being, it deepens the experience of the prosocial emotions of compassion, gratitude and awe. We learn directly that life is short and precious; the joyful moments and the suffering moments.
How can the community help support ZHP? And caregiving and hospice in general?
The community can support Zen Hospice Project by spreading the word about our Mindful Caregiver Education. We have learned so much about the challenges and joys of caregiving and what’s possible at the end of life; we want to share what we’ve learned and our model of compassionate human-centered care with as many people as possible.
We all have caregiving in common; we’ve been cared for, we know caregivers or are caregivers, and most likely, we’ll need caregiving at some point in our lives. People can support caregiving and hospice in many ways: by encouraging self-care or offering respite to the caregivers in their own lives; by supporting organizations through donations or volunteer service that are working against the clock to prepare future caregivers for the roles they will eventually fill; and by finding opportunities to talk about death and dying and their own values about the end of life with family and friends.
We are energized to see so much engagement, innovation, conversation, and commitment to improving caregiving and end-of-life experiences; the need is great and growing and we plan to be here and to continue to collaborate with the End Well community and organizations, clinicians, individuals, and other partners to make a meaningful impact in designing a better experience for everyone.
What activities or training opportunities exist that our community can get involved with?
Zen Hospice Project’s Volunteer Caregiver Program is thriving, and our volunteer caregivers continue to serve on the Palliative Care Ward at Laguna Honda Hospital in San Francisco. Soon, we expect to have an additional service site for volunteer caregivers.
We train volunteers to serve with a range of skills grounded in a foundation of mindfulness, compassion, and practical support for residents, families, and even other caregivers. Our volunteers find their training and service to be a source for resiliency, inspiration, and open-heartedness. As a result, the Zen Hospice Project Volunteer Caregiver Program has emerged as one of the longest continuously running hospice volunteer programs in the country. Although volunteers are required to commit to one year of service, many serve well beyond. Our average volunteer term is five years with many volunteers serving for a decade or more.
Additionally, our Mindful Caregiver Education courses are available to everyone; family, informal, and professional caregivers; friends of people who are sick or dying; those developing a mindfulness practice to support their relationships with family, friends, the public and one’s self; and those who anticipate being a caregiver in the future. Many caregivers share that they feel more confident, resilient, and patient in their caregiving roles after completing an MCE course.
Our Open Death Conversations, offered both in person and online, are intended for people who are interested in exploring and furthering their own relationship to the big topics of death and dying. Everyone is invited; we only ask that participants show up with an open heart and open mind, and allow themselves to go where they need to go. People from all backgrounds attend our conversations — young, old, many people who have not had experience with death, some people who are facing their own end of life.
We have no agenda other than to generate meaningful, energetic conversation free from judgment.
I am so grateful for the opportunity to share what’s going on at Zen Hospice Project with the End Well community, and I invite people to contact me directly at email@example.com ideas for partnership and collaboration, questions, or “just” for a conversation. (I know some of the best spots in the East Bay and SF for tea and a scone.)
Tom was just one of the many Residents we served at our Guest House in the past year. Because of the generosity from donors like you, we were able to serve Tom at end of life with no cost to him. Tom’s generosity to others throughout his life prevented him from being able to afford the cost of care at the Guest House. Had he not been cared for at the Guest House, Tom’s prognosis would have placed him with in-home hospice care, under the supervision of a single hospice care nurse for one hour, twice a week. Tom’s final days could have ended in an acute care setting, while connected to an array of machinery. Yet, Tom’s final days were the opposite of that, full of comfort and happiness complemented by the compassionate care of Zen Hospice Project caregivers.
One of our Guest House nurses shares her story:
Tom lived a life of service as a nurse and a chiropractor by profession, and as a valuable friend, mentor and teacher. He touched many, many lives with grace and healing. After his intense life-long devotion to the well being of other people, it was especially meaningful for him to receive the nurturing and care from us at Zen Hospice Project.
In the homey warmth of the Guest House, he was able to deeply receive the love of his friends, family and former colleagues, and of our nurses, volunteers, cooks and staff. This was a profound process of letting go of old identities and roles to embrace being loved as the beautiful, whole human he was. A radiant person, Tom glowed with gratitude at the Guest House, often tearing up with thankfulness for his lovely room and for the attentive love and care from our staff.
Tom loved us right back, adding to the joy and deep meaning of our time caring for him. He was able to truly live, love, enjoy, heal and grow, right until his last breath with us at his bedside in the Guest House. We are all grateful for our time with Tom and forever touched by him.
Tom touched us and left everyone with heart-filled gratitude to have met him and his family.
All of us at Zen Hospice Project thank you for your support and generosity with hope that you will continue to give, so that we can continue to help more people like Tom at end of life. Please support Zen Hospice Project and people like Tom. Give today! No gift is too small.
One of the Senior Instructors of Zen Hospice Project’s Mindful Caregiver Education Program discusses her path of service, lessons as a teacher and exciting new developments in the education program.
As a youth, Mary had the rare opportunity to gain awareness and respect for end of life care; her mother and stepfather founded a hospice for incarcerated men at the California Medical Facility in Vacaville. She was able to develop a sense for the importance and beauty of hospice and palliative care. However it was her later interest in Buddhism that really opened the door to her career in the field as an adult.
Seeking a structured way to explore her aspirations of using service as an expression of spiritual practice, Mary attended a Buddhist chaplaincy program. A faculty member there guided her to Zen Hospice Project to fulfill the program’s requirement of volunteer service. It was a perfect fit.
Mary completed the 43-hour volunteer caregiver training and continued as a volunteer at Laguna Honda Hospital and the Guest House facilities for about 10 years.
Early on in her hospice service, Mary experienced the moment when the Zen Hospice Project approach fully integrated into her practice.
One day at Laguna Honda Hospital, Mary was asked by a nurse to accompany her at the bedside while the nurse had to reposition and clean a man who was in an enormous amount of pain. The nurse asked Mary to come and be there to support the patient – to give him something else to focus on and to be a soothing presence. Mary realized it would also serve as support for the nurse while she was doing her necessary but pain-inflicting duty. Mary recalled something she learned in her Zen Hospice Project training: There is nothing to fix. She repeated this mini-mantra to herself while keeping herself grounded with her feet on the floor, her attention on breath, and simply being a centered presence in room. She gently stroked his hand and maintained eye contact with loving support, silently communicating “I’m right here with you, you’re doing a great job, this will be over soon…”
Mary embodied the lesson that there are places to draw from inside each of us, to keep ourselves stable in a challenging bedside situation – and to model and offer that presence out to those under care and everyone in the room.
Five years into her volunteer service, as a natural fit for the program, Mary was invited and joyfully became facilitator for volunteer caregiver training. Along the way, she also represented Zen Hospice Project in the local community at organizations and events. So when the Mindful Caregiver Education launched in 2014, Mary was on board from day one.
Mary says she is continually learning and maturing as a facilitator. Teaching these courses is a mindfulness practice in itself. She says of the Mindful Caregiver Education, “What we offer is not mechanical instruction. It is about how caring for others connects us to them and to ourselves. And draws us to universal human truths. Most everyone who enrolls in Mindful Caregiver Education finds it really nurturing. But it also brings up vulnerability and other strong emotions.”
This openness of the Zen Hospice Project approach brings up vulnerability for her as a teacher as well. So over time Mary has developed an exercise prior to teaching each course. She imagines the participants and feels gratitude and appreciation for them, consciously connecting to their humanity and offering her humanity in return, before they even get in the room together. She understands that the whole class will be co-creating something together, students and facilitators alike. And it is never the same experience twice.
The Zen Hospice Project education model is to teach in pairs whenever possible. Mary especially appreciates the opportunity to facilitate classes with a colleague. She feels that having a teaching partner produces a richer experience for everyone. Working alongside those new to teaching brings Mary a deeper level of awareness and responsibility to the work. It reinforces her sense of gratitude to be doing something that is meaningful to her personally, that she loves, and carries real value in the world.
Mary is committed to the Zen Hospice Project model of care and is excited about the opportunity to affect people’s approach to death and dying, and long term chronic illness, and in turn their approach to living. As her teaching experience expands, her personal practice continues to evolve.
Especially enthusiastic about the new Mindful Family Caregiving Education Program she has been co-creating with her fellow Zen Hospice Project faculty, Mary is passionate about reaching out to new communities and the potential broader effect on society.
“I believe so strongly in the importance of this work. I see it as a form of resistance. Not in any political way, but in a deeper human way. The work we’re doing in Mindful Caregiver Education and with Family Caregivers is a path to reclaiming our humanity. To look directly at our mortality and vulnerability can go a long way in helping us clarify and prioritize the best parts of ourselves. We see that there is so much power in simple things like kindness and tenderness, and in experiencing the mysterious beauty that is uncovered by paying attention… even when what we’re paying attention to is uncomfortable.”
Ken Hughes was the Vice President of the Paramount Flag Company here in San Francisco. In 1978 he was approached by Gilbert Baker, the original designer of the Gay Pride rainbow flag. Baker was looking for a manufacturer who could produce many flags for the 1979 Gay Freedom Day Parade. The design originally had eight stripes: pink, red, orange, yellow, green, turquoise, indigo and violet. Hughes was eager to help, yet suggested that Baker delete the pink stripe as flag fabric in that color wasn’t readily available for mass production. Turquoise was also removed, yielding the rainbow pride flag we know of today. The Paramount Flag Company is also well known for being a manufacturer of the California Grizzly Bear State Flag.
Ken began his life of service in the late 1980’s when he was a volunteer for The Shanti Project. Shanti is Sanskrit for “inner peace”. The organization pairs volunteers one-on-one with those in need: women with cancer, LGBT Seniors and those living with, and dying from HIV or HepC.
By the early 1990’s Ken was actively volunteering at Zen Hospice Project Guest House. As a practicing Buddhist he was drawn to the intimate environment where he could offer comfort and care to the Residents.
His dear friends were astounded at how quickly his disease progressed and suddenly he died.
Ken wished to acknowledge and celebrate Zen Hospice Project. He bequeathed a major gift to us, and we will be forever grateful for his service during life and his generosity as he left us.
Fly your flag proudly, Ken, you will be missed.
Joan begins her shift by greeting each Resident. She always asks how they are doing, knowing that some days are better than others. If a Resident is able, Joan accompanies him or her on a walk around the Guest House or a visit to the garden. She is ready to listen, if they would like to talk. Perhaps to hear their story; definitely to learn from their insights.
Many times a Resident doesn’t wish to speak. Joan rests her hand on their forearm. She doesn’t ask permission; rarely is her hand brushed away. Joan understands the profound power of the simple human touch. It is mutually satisfying.
Joan discovered Zen Hospice Project in 1995, at the height of the AIDS epidemic, while accompanying a dear friend seeking a place to die. In a time of enormous fear and great lack
of knowledge about the disease, the Guest House was a rare place of understanding and solace for those wanting to die with dignity. Almost immediately she felt that hospice work would be her heart work; upon learning of volunteer opportunities, she applied, was accepted into the program and began her training.
Joan has volunteered for over 20 years at Laguna Honda Hospital and at the Guest House since 2010. With her background in business and in renovating houses, she was a natural choice to help the renovation of the Guest House, overseeing contractors during the multi-year process. She speaks warmly of contractors generously donating above and beyond their bids, giving time and materials to this most worthy project.
Volunteer caregivers arrive for their shift with no agenda other than to meet each Resident where they are at the moment. The concerns of the rest of the world wash away quickly, and then they are completely present and ready to give openly and compassionately to others.
Joan says goodbye to each Resident at the end of her shift. She often thinks “but I am just getting to know you”, yet she closes the Guest House door behind her fully understanding they might not be there when she returns the next time. And that’s okay. She made the connection and they felt it.
Joan believes death is the greatest teacher. She has learned much over time, and yet knows there is yet so much to learn.
For those of you who would like to consider becoming a Volunteer Caregiver at Zen Hospice Project, please click here.
In October 2016, Heidi Berkman, founder of The Bloom Project, based in Portland, Oregon, began a collaboration with Zen Hospice Project to bring flower bouquets to Zen Hospice Project’s Guest House Residents and their caregivers.
The Bloom Project donates fresh bouquets of flowers to local hospice and palliative care patients, demonstrating their mission to beauty, giving and joy during end of life care. Nearby florists and supermarkets donate the flowers they can no longer sell. Each Monday these “cast offs” are brought to the Guest House, where a team of volunteers clean and prune them. Then they are assembled into stunning arrangements that are brought to Guest House Resident’s rooms and can be found throughout the first floor.
Larisa Minerva, Bloom Project Coordinator and Volunteer Caregiver at Laguna Honda Hospital, trains and manages a team of six that assembles an average of ten bouquets per week. The blooms from the previous week’s bouquets are arranged into a beautiful mandala in the Guest House garden, providing the perfect conclusion to each week’s volunteer experience. Larisa is the owner of Bewilder Floral, and has opened a storefront in Berkeley this past Fall.
With 12 successful months of the collaboration with The Bloom Project, we are ready to expand to South Three, Laguna Honda Hospital’s 60-bed palliative ward. This expansion will deliver more than 10 times the amount of bouquets created each week, and has the potential to expand the program by adding more volunteers and three or more additional floral partners.
Death has long been a presence in Hephzi’s life. Her father, a child at the time, was on one of the very last Kinder transport out of Czechoslovakia in 1939. This was the last resort for the many Jewish families, hoping to send their children away from the terrors of the the Nazi regime. All other members of her father’s family were killed in the concentration camps at Auschwitz-Birkenau. He never got a chance to say goodbye to any of his family. As a survivor, living to the age of 87, the weight of their deaths never abated for him.
Hephzi grew up in Glasgow, Scotland, as you might guess from the delightful lilt of her accent.
When she was 18, while waiting for the bus on the way to university she had an epiphany. Hephzi realized, “I don’t have to stay here, I can go.”
And go she did, spending the next ten years of her life in Israel, where living with the prospect of dying can be very present . With rare exception, all Israeli citizens must serve in the military for two years, starting at age 18. Living in Israel through the Yom Kippur War in 1974, Hephzi saw photographs of young people who died in the war that day televised each evening. She says, “there is an awareness of death that’s always traveling through their society.”
Hephzi came to California in 1978 and in ensuing years learned the Rosen Method of Body Work. She began sitting bedside with patients dying of AIDS, often offering hands on therapy to comfort them. Her Buddhist practice deepened and eventually she found her way to Zen Hospice Project, where she encountered Eric Poche, one of the holiest people she has ever met. She knew immediately if she could learn from this man to be compassionate, caring, mindful, present and wise it would change her life, and indeed it did.
She began volunteering at the old C2 ward at Laguna Honda Hospital. It was a large community, both Residents and caregivers, who got to know each and care very deeply for one another. There was a garden, now derelict, where those in wheelchairs could be pushed, to enjoy the outdoors.Over time the garden filled with relics and tributes to those that had passed: a beautiful collage of items to celebrate the lives that had passed through.
Hephzi now volunteers at both Laguna Honda Hospital and the Guest House. When asked how she approaches a new resident she offers, “I stop at the threshold, I never enter quickly. I pause. I take a breath. I leave the rest of my world behind so I can enter in a fresh new way. I introduce myself and ask if they would like me to visit. If invited to stay, I sit down. I wait for us to settle together. It is the Resident that leads the connection, and I wait, watch, am present and bring my whole self to their bedside”.
Her approach is particularly valuable when encountering Residents at Laguna Honda Hospital who have lived previously in the Tenderloin. Many have lost the ability to speak or connect with those they don’t know. Many are suspicious, wondering if they will be judged? Will you tell my social worker?
Hephzi’s approach to pause and be patient has served her well so she can establish trust with these Residents. She has forged friendships with many.
She tells them, “I’ll listen and I won’t criticize, I won’t judge and I’m here to hear whatever you have to say”.
In addition to tirelessly volunteering at Zen Hospice Project, she teaches Mindfulness Stress Reduction at her synagogue in Palo Alto, where she is an active member. She adds, “The people that I’ve worked with are so open to learning, so interested in experiencing the feelings, so touched by what they find in themselves and the ability to share with other people. Just to experience what a profound thing it is to contemplate the end of your life.
This book group member and Buddhist is very involved with her synagogue, and loves walking. She loves being by the ocean, visiting with friends and utterly delights in her two grandchildren. And she treasures the profound friendship she has forged with her fellow volunteers at Laguna Honda Hospital, many of whom have been together for over six years.
A group of four women kneel down at a circular wooden table dispensing petals from a bowl into circular patterns. One starts the pattern with a center of peonies. Another adds an exterior border of ombre rose petals that fade from orange to blush. The others fill in with patterns of color and texture, riffing off one another like silent jazz musicians. They dispense each piece of the mosaic, placing each flower one at a time until it is complete. Then they step back to take in the spontaneous creation: a flower mandala.
These women are volunteers at Zen Hospice Project in San Francisco. Through The Bloom Project, they collect and arrange donated flowers for Resident’s rooms and common spaces at the six bed Victorian Guest House in Hayes Valley. Once they are done with the arrangements, all flowers that are deemed too wilted are used to create a mandala on the small wooden deck in the backyard.
Inspired by traditional mandalas in India and Tibet, the practice developed as a way to repurpose the unsold flowers at the end of the day. The mandala is unique each week based on whatever flora remained, and is allowed to blow in the wind and decay as the week progresses–a silent reminder both of beauty and vulnerability.
I made my first flower mandala on June 4th, 2013, the day my partner, Denali, left to climb K2, the second highest mountain in the world. I had just started my own floral business that spring–a wooden pushcart a friend had built for me, loaded with buckets of flowers out on Valencia Street in San Francisco.
On the sunlit wooden floor of our apartment, surrounded by everything in boxes in preparation for his trip, I laid out striped tulip petals in a circle about my arms width across. Within the circle, I placed the heads of four lacy flowers, forming a diamond. Then sage leaves in clusters of three beside each head. On grew a pattern as each flower revealed it’s fading beauty converging in the center.
I told Denali I would make one mandala each day he was gone, thinking of them as prayers to keep him safe. We had met as students at California College of the Arts three years before and after graduation we had made plans to reunite after his climb to teach English abroad together. In the weeks after he left, I finished moving out of our apartment, closed up shop, and was beginning the process of saying goodbye to friends and favorite places.
As their liaison, I received phone calls via satellite every few days with updates on their progress I would then email out to friends and family. Each contact was a relief. He told me of the people of Pakistan and how friendly they had been, and of the flowers he collected along their trek that reminded him of me.
As their window for summiting approached, I watched my phone anxiously as days crept by without a word. I would lay awake at night thinking of the last time we talked. He described the softly falling snow as if it was magic. From the first day we met, that was always how he talked– constantly in awe of the world around him.
Four days later, after 52 mandalas, I got a call from a dear climbing friend confirming my worst fears had come true. Denali and his father had disappeared in an avalanche in the middle of the night. Sherpas looked for their bodies but they were never found.
I remember hyperventilating, repeating “what am I going to do?” over and over. I remember staying up all night, fighting through waves of shock and exhaustion. I remember not being able to eat and a sharp pain that settled in the center of my chest and remained for months. But I also remember resolve. “We have to live the best lives we possibly can for him,” were words that came out of my mouth as if from somewhere else. I thought of his body. The smell of his skin and the placement of his freckles were like a map leading me home. Something once so familiar, was now frozen on a mountain on the other side of the world.
From there my memory gets blurry. It was as if I was haunted, or looking backwards through a prism. Without a place to live, I moved from couch to couch, picking everything up and heading to the next spot as soon as something didn’t feel right, and almost nothing ever felt right. It was three months before I cooked a meal for myself, another six before I landed a job at a florist in Santa Cruz.
The first time I smiled to myself and really felt the lift of joy again was the following spring as I walked through a field of dew dusted roses. The feeling was immediately followed by guilt. “How could you be smiling at a time like this?” I thought. Yet there was something new rising to the surface.
The gravity of my loss felt immense beside the ease of flowers. I thought of how Denali had lived each day with delight and whimsy. The words that came to me the night he died came again, “I must live the best life I can for him.” I had been constantly comparing the life I was robbed of to life I now lived, failing to see the value in each moment.
It occurred to me that a person cannot will not know true happiness unless they have felt true sorrow, and the depth granted to me by my experience could be a tool rather than a burden. I no longer wanted to be a victim of my circumstance. It was time to start remaking my life into something new.
During my shift at the flower shop the next day, I collected all the damaged petals and flowers too old to sell. After closing, I composed the first mandala in months on the floor of the entry way, admiring it just long enough to take a picture then sweeping it away as I continued my cleaning tasks.
I began making them again each day, no longer as prayers for preservation, only as meditations on transience. I learned new depths to the language of flowers—how unique each petal, and yet how vulnerable. In their beauty they retaught me how wondrous life could be. And when they wilted, they taught me how to let go.
That year I made 101 mandalas. The final one was created on the anniversary of Denali’s death death, on a solo backpacking trip in Alaska in view of the mountain he was named after. I moved back to San Francisco shortly after to be surrounded by all the things that I once shared with him. Only they weren’t ours anymore. They were my own, and I was returning to the city as someone new.
My story had turned out so differently than I had imagined. Not only in losing Denali, and almost more surprising to me, in how beautiful my life had become despite having lost him. I wanted to share my story with others who were drowning in grief as I once was. I wanted to tell them that their lives were far from over.
It wasn’t long before I heard about Zen Hospice Project’s use of flowers in the end of life care. Flowers are an important part of the services provided at this special home for the dying. Flowers welcome guests at the door, are placed amongst food on dining trays and in Resident’s rooms as well. And when a Resident passes away, as we’re wheeling the body out through the garden, heading for the gate, we pause for what is called the Flower Petal Ceremony. Anyone who wants – fellow Residents, family, nurses, volunteers, staff, the hearse drivers too – shares a story or a song or silence, as we sprinkle the body with flower petals.” From their first moment in the Guest House to their last, the Residents are accompanied surrounded by flowers.
Zen Hospice Project’s attitude towards death as a part of life worthy of attention and respect felt like the only thing that made sense to me. I signed up for the Volunteer Caregiver training, and soon was holding the hands of Residents who were dying, caressing their hair and telling them they are loved. I was able to care for strangers in the way I wish I could have cared for Denali.
Before my bedside training was even complete, I was asked to help with the flower donation program led by The Bloom Project. I began collecting flower donations and teaching volunteers how to clean flowers in various states of freshness and decay, as well as the joy of flower arranging. When it came time to toss flowers deemed unusable, I could see a familiar concerned look on the faces of the women around the table. I instantly knew what to do.
I asked the volunteers to collect the heads of the older flowers in a bowl, and once we were all cleaned up for the day, I led the group over to a low circular table in the Guest House garden. I started in the center with a cluster of floppy white lilies forming a circle. Another woman scooped up pink rose petals from the bowl and formed a ring around the lilies. And just like that one by one the other ladies grabbed handfuls of flowers, placing them in patterns around each other. For so long I had been making mandalas on my own, It was magical to step back to watch the hands of strangers come together as if they had been doing this for years.
The Guest House garden has become a sanctuary for me and so many others who pass through. It is here the mandalas live on.
MaryEllen came to the Guest House after retiring from a long career in the hospitality industry. She became interested in cooking as a child, playing chef in her best friend’s kitchen. While cooking grew into a serious hobby, for her career she set her sights on a profession of psychology. During research in preparation for a Master’s Thesis in Experimental Psychology, she found herself wrestling with the idea that she had chosen the wrong field. Ultimately she decided she could do the most good for people by cooking for them; so she left graduate school for a restaurant kitchen. As a chef, MaryEllen worked in restaurants from Washington State to Washington, D.C. During the Clinton administration she worked at the Blair House, the President’s Guest House.
Shortly before relocating to San Francisco, a dear friend from MaryEllen’s early days in the restaurant industry experienced the tragic loss of an infant child. The story of a volunteer dispatched with the EMTs, who assisted her friend’s family following the accident, inspired MaryEllen to seek a possible second career in trauma intervention. This brought her to the Mindful Caregiver Education program. A year later, while on a Buddhist Pilgrimage in Nepal and India, she met a long time Zen Hospice Project volunteer who recruited her to come to the Guest House kitchen, first as a volunteer, then as staff. Instead of leaving one career behind to embark upon another, in her service at the Guest House MaryEllen aspires to combine the spiritual practice central to her life, with the cooking skills acquired over the course of her career.
“At the Guest House, our intention is to cook to comfort, not to cure.” MaryEllen is just one person on a team of more than a dozen cooks and volunteers in the kitchen. Each meal, each snack, each tray is prepared specifically for a particular Resident. Whoever is serving in the kitchen prepares and plates the food in a way to acknowledge the Resident’s tastes, while also reflecting the comforting and joyful memories of food, even as their physical capacity to eat diminishes. A tray of lovingly prepared food nourishes every person involved in the care of the person it was prepared for.
His eyes and skin were bright yellow. Shocking to see. In his final hours, “Michael” was severely jaundiced, semi-conscious, twitching and jerking spasmodically, eyes rolling. Only in his mid-40s, my age exactly, Michael died of liver and renal failure due to alcoholism. Knowing only these tragic facts about him, I held his hand as he took his final breaths.
I’m a certified nursing assistant at Zen Hospice Project’s Guest House in San Francisco. I have the honor of giving direct care to people from all walks of life in their final weeks and days of living. Sometimes I get to know the residents at the Guest House very well, spending many weeks with them and sharing in the various stages of their final journey. And sometimes people are here for such a brief time or remain remote and hidden in their private processes at the end of life, that I am a caring stranger, only knowing them as suffering human beings worthy of compassion.
Michael was with us for less than a week. Deeply withdrawn, he mostly just laid in bed watching TV alone. He had been up and walking around a little the days before his death, and he had been clear in not wanting interaction with anyone, politely declining all offers of company from nursing staff and volunteers. I checked in with him periodically, but didn’t push him. Everyone has different needs at the end of life; some people want lots of connection, and some want to be left alone. We honor what each person desires; this is their life, their death.
Michael’s partner of many years, “Erin,” valiantly sat at Michael’s bedside for much of his last days alive. She was his only visitor. Bravely allowing herself to grieve, she always had tears in her eyes as she sat holding his hand, talking to him, playing show-tunes and dance music for him. Sometimes she just sat in silence with him in the recliner by his bed, pain and anguish dripping from her face. I’d had only a few passing words with her, letting her have space and privacy with Michael, but making sure she knew we were here for her too. I brought her sandwiches and tea.
On what was to be his last day, Erin invited me into Michael’s room, and we sat together, each holding one of his hands as he lay twitching, his belly and legs swollen with unprocessed fluid. He was a terrible sight to see. I felt my heart quiver in distress at his suffering, and I quieted my breathing and my body in order to be steadfastly loving in the face of his pain. He looked so familiar to me as a person my own age, someone who could have easily been my friend, and yet the extreme yellow color of his skin made him look alien. Feeling his humanity still there, I held his hand and spoke kind words to him; he squeezed my hand back in recognition.
Erin told me stories of the good times they’d shared and acknowledged that they’d had some really hard times too. Although I was virtually a stranger, I felt the human connection between the three of us, the gravity of the situation creating a sudden and precious intimacy. His eyes met mine briefly as they rolled in his head – he was there. I also had the distinct sensation that he was listening to us although he could no longer respond.
After a while, as Erin and I talked, I noticed that Michael’s body had grown still; the twitching had stopped. I noted this, yet didn’t call Erin’s attention to it as she continued to share stories with me about their relationship, sometimes laughing, sometimes crying. Soon after this stillness started, he began what is called “guppy breathing,” a silent, very shallow gulping breath that usually indicates that death is minutes away.
“Erin,” I said quietly, “I think he’s going. Now’s the time to say what you need to say that you haven’t yet.” Her face crumpled with the impact, and she immediately took action, “I need to call his mother.” She quickly called Michael’s mother who luckily answered right away. “Say it now,” Erin told her urgently. Putting the cell phone on speaker, Erin held the phone toward Michael, and I heard his mother’s disembodied voice from across the country say, “Michael, it’s Mom. Honey, I love you, and it’s time to let go.” Erin hung up and bent over onto Michael’s bed and sobbed.
He breathed his final breath as his mother said, “I love you,” and black-streaked fluid bubbled from his mouth. I felt his last few faint heartbeats as I held his hand, feeling my own heart beat faster with the sorrow of the moment, feeling Erin’s grief at the loss of her partner, feeling his unseen mother’s grief at the death of her son, and feeling the sorrow of what must have been a very painful life for Michael to have drunk himself to death at the age of 46.
In the minutes after his last breath, Erin continued to cry and speak to Michael, saying very intimate things to him about their relationship. I sat quiet, still and respectful with them in that intense intimacy, a caring stranger welcomed into this moment of private love and grief. I felt my own experiences of love and loss well up in me as I listened to Erin, tears in my own eyes as I witnessed the end of a complex and painful love story.
At some point I quietly asked Erin if she would like some time alone with Michael’s body. She said no and decisively stood up. “I’ve got my image to hold forever; I said what I needed to say. I need to go now, I’m done here.” I reassured her there was no need to hurry, yet she was clear that she was ready to go. I inquired about support at home for her, and she said she’d already arranged to take a month off from work to be with her grief, and she had friends and family waiting to care for her. She was in pain, but I could feel her strength through her direct expression of that pain; she wasn’t pushing her pain away. With this observation, and hearing of her support plan already in place, my sense was that she was ok. We hugged for a long time; I praised her strength and skill and thanked her for letting me be with her and Michael at the end. Even though we’d only known each other so very briefly, we felt like sisters after sharing those incredibly intimate moments of Michael’s death together.
No one else came for Michael. The lovely bathing and flower petal rituals we offer at the Guest House were not wanted by the family, who remained back east; no other visitors came to say goodbye. On my own, I prepared Michael’s body, cleaned up the fluid that had spilled out of him, and took some moments to just sit quietly with him before the mortuary came to take his body away. I wondered what his life had been like to end here, like this, at age 46. I spoke words of compassion to him as I brushed his hair. And I said the phrases of loving-kindness to wish that Michael, his family, and devoted partner Erin be free from suffering. Wishing that we may all be free from suffering. And I walked out of the room, a caring stranger filled with gratitude for the lives and deaths I am privileged to share.
Celeyce Matthews is a CNA at the Guest House as well as a facilitator for Mindful Caregiver Education and the Open Death Conversation. This essay was originally published on Legacy.com in December of 2016.