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.
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.
I have been present for moments surrounding nearly a thousand deaths, an honor that few experience, but to me, is much more than a job.
As a hospice nurse I have borne witness to some of the most profound moments of people’s lives, the end for some, and the loss, pain and sometimes relief for those surrounding them.
This work fills my life with rich experiences, deep meaning and helps me understand how to really live. I am very aware of what this work does for me, but I was recently reminded of what it feels like to be on the receiving end of this care.
At 37 years old, my dear friend Chelsea was too young, too alive it seemed, to experience cancer. But there I found myself, alongside her family, present with her during the last 10 days of her life. Chelsea’s decline was sudden and her symptoms necessitated ICU level care. Even though it was a different environment and circumstances than what I am used to, I learned so much about what it means to hold the responsibility of caring for people in the most raw and unbearable moments of their lives.
What I learned being cared for by nurses:
Small kind things are not small at all. It was the little things that held me up; eye contact, a hand on my shoulder, help ordering pizza when we were all running on fumes.
Silence is golden. In uncomfortable and challenging moments it can be tempting to fill the space, but sometimes the best thing to do is be present and quiet and let everyone experience those moments fully. There was something so supportive about someone standing quiet and still, with a knowing look that communicated, “I know this is awful, and I am here with you.”
Sadness is healing. There is nothing okay about a 37 year old dying and leaving her three year-old son. It is terribly sad. I had no desire to be cheered up and felt most supported by the people who affirmed the pain of the experience and let me have breakdowns and cry. As nurses we love to help people, but It is not always our job to fix things. The harder and more impactful thing to do is be present with people and allow them the space to release.
Getting to know people matters. It can be easy to forget that the sick bodies we care for are real people with rich and important lives. I was most touched by the nurses who called Chelsea by her name even when she was unconscious and those who had a genuine interest in knowing who she was. My favorite nurses were the ones who looked through her pictures, asked questions, listened to stories and read things she wrote.
Chelsea’s nurses inspired me with the loving care they provided for her and her loved ones. Nurses everywhere don’t get enough recognition for answering such an important call.
There is a heart to medicine that not all people have and an art to nursing that not all people know. I believe the art lives in those small kind things, in remaining connected as humans to those we are caring for and the people they love.
This year, in celebration of Nurse’s Week, I am calling on all of us to remember the incredible impact we are capable of having on people, and celebrate our ability to help in those moments with those small kind things that make such a difference in this job.
My hope for myself, and all nurses, is that we find ways to stay connected to the art of this work and committed to the practices that keep us healthy and whole – so that our work can be a meaningful service to others and something that fills us with life.
Melissa Forde, BSN RN, is the Community Outreach Director at Zen Hospice Project.
In the last year and a half I’ve been working at Zen Hospice Project’s Guest House as a nurse, I have so frequently been blown away by the impact their calm presence has on our residents. Their training and willingness to step in allow us to work as a team to provide steady, compassionate care even when nursing staff are involved in medical interventions. They also frequently help calm Residents going through difficult moments, often sensing just the right mix of conversation and quiet accompaniment to provide. The lessons I have learned from watching these practitioners of unmediated compassion are innumerable.
Away from the bedside, volunteers are helping Zen Hospice Project maintain and grow our capability to provide compassionate care. Our kitchen volunteers help our staff provide meals tailored to each individual Resident’s ability and preferences. When they present their beautifully-decorated plates, the care that goes into their cooking is obvious. As a nurse I am constantly impressed at how well our kitchen makes the Residents feel supported and comforted.
I also see firsthand how much our Residents appreciate the special skills volunteers. Most noticeable to me are the music volunteers, whether piano, guitar or vocal. Many times I have seen Residents soothed into peaceful sleep, or rocking out to their favorite song. One powerful classical piano piece elicited from a Russian resident an impressed “this is deluxe music.” From professional framers to experienced hospice nurses, myriad skills help support our nursing work.
Thank you to volunteers, both at Zen Hospice Project and everywhere else! Your giving spirit means so much to us nurses.
Ryan Sturges is a Licensed Vocational Nurse at Zen Hospice Project’s Guest House.
When first starting out as a volunteer at the Zen Hospice Project over 6 months ago, I had no idea about the ways in which my life would be influenced. All I knew was that I wanted to learn more about what the hospice does and how I could help. It turned out that I was benefitting from participating in the range of courses offered too. Whether it was when participating in the variety of Mindful Caregiver Education (MCE) courses or helping in the preparation for future courses to be run, it quickly dawned on me that I was now forever changed.
Each of the courses are deeply rooted in the Zen philosophy of “mindfulness” – an aspect of the eastern expression of the art of living that most of the western world either isn’t aware of or hasn’t fully understood yet. In general, when dealing with the most complex and challenging of circumstances either as a caregiver or a family member of a loved one residing at the hospice or even the patient themselves, the most overwhelming emotions can come to the fore. Most of us rely on coping mechanisms to deal with these extreme and heightened sentiments that don’t necessarily mitigate the upheaval we feel. They serve more or less as a quick-fix to address the situation in the short-term or are rooted in measures than seem to be self-serving. The real impact of such events usually are felt in the long-term, much after the fact. It is in these instances of contemplative turmoil do we feel the full swell of the underlying pain.
In order to better handle ourselves in these moments, it is best to incorporate the practice of mindfulness right from the beginning. Each of the courses offered at the Zen Hospice Project provide a chance to inculcate this practice as a discipline and as a tool to have at our disposal, as we continue to lead our lives in each of our individual paths. I myself, having gone through the courses, have learnt that being present in the moment, by allowing oneself to be fully aware of the gift of life and all that we take for granted, a wave of compassion and gratitude can wash over us. It is with this realization, it becomes possible to gain a lens to look at all the above mentioned difficult circumstances with a new approach. The temporary nature of our life and everything that comes with it becomes apparent. It helps in realizing that everything that seems insurmountable, shall pass.
It is this awareness of the dynamic nature of our existence, through crests and troughs, forever changing and evolving, that nothing stays on forever. Nothing material anyway. All that remains is an act of kindness, a good deed rooted in compassion or even the compassion one can offer with just their silent presence. Therein lies the true art of living. Sometimes learning that can be as simple as signing up for a course, so I’ve learnt.
Dhiraj Korwani is a Special Skills Volunteer and regular contributor to Zen Hospice Project. To read more about Zen Hospice Project’s Mindful Caregiver Education, click here.
In a beautiful Victorian on a hill in San Francisco, there is a woman lying in bed under a yellow patchwork quilt. She’s been in this light-filled, high-ceilinged room for weeks with a growing tumor now the size of a large melon in her belly. She does not speak English; I do not speak her language. I sit at her bedside. We gaze at each other, her deep-set eyes open and direct. Sometimes she speaks to me in her language, sometimes I speak to her in mine, and sometimes we both say, “I don’t understand” (one of her few English phrases). Sometimes we smile at each other, sometimes we hold hands, sometimes I feed her, sometimes I help a nurse clean her and change her gown. Mostly I just sit with her. I don’t know her stories and she doesn’t know mine. And yet each week as I sit with her, I feel a deep sense of intimacy, a shared humanity that connects us in quiet presence.
I’m a volunteer caregiver at Zen Hospice Project’s Guest House in San Francisco. Every Saturday from 9am-2pm I spend time with people who are nearing their death. Zen Hospice Project (ZHP) provides mindful and compassionate end-of-life care at its six-bed residential Guest House and the 60-bed palliative care/hospice wing of the city’s Laguna Honda Hospital. ZHP is an internationally respected, pioneering hospice care provider grounded in secular contemplative practices.
As part of ZHP’s volunteer caregiver program, my colleagues and I have gone through a 40+-hour training, followed by a commitment to serve at one 5-hour shift every week for a year. Volunteers are trained to be a compassionate presence for patients and their families, and also for our personal selves and other caregivers, acknowledging the interconnection of our common human experience. We volunteers serve in a variety of ways… mostly we sit with mindful and compassionate acceptance at the bedside, simply being with people in their own unique process of letting go of life.
Sitting quietly with a resident, often my story drops away and I just am and we are together in the moment. (We call patients at the Guest House “residents” because they are living there, even as they are dying.) I watch my mind do its little human dance of swirling thoughts and emotions, judgments and projections, and impulses to get lost in glossy distractions. As I sit I become less identified with all that chatter and more tuned in to this moment of reality, this intimate moment of real life. I am grateful for those times. All my worries, the acute and the petty, can lose their intensity and just melt into a deeper sense of the underlying interconnectivity of life happening right NOW. Many times tears spring to my eyes as I’m overwhelmed with the beauty of the moment, even when there is pain and struggle. My heart swells with gratitude, awe and deep care for this particular person I’m sitting with, for myself, and for all beings. The beauty and awfulness of living are all here at all times, blending together into the enormous experience of life and death.
Today the Guest House was awash in deep emotion as two people were actively dying. One of them was a phenomenal, well-loved powerhouse of a man who started to decline dramatically last night. This morning I sat quietly with him for a while as he lay unconscious before a large contingent of his loved ones arrived to celebrate him and say goodbye. Every breath was an obvious effort; his once-burly body, now gaunt and nearly transparent, strained with each inhalation. His cloudy eyes were half open and fixed. Bright sunlight and a view of lush green treetops through the tall windows facing him went unseen by those motionless eyes. In the long pauses between each arduous breath he truly appeared dead, and yet his body continued its lifelong work of inhaling and exhaling. As I sat with him, there was a palpable sense of his life and his death simultaneously present, his transition so close that the two distinct states blurred. I stayed present with him, marveling at this observation, and aware of the life and death in my own body. I kissed the top of his head as I said goodbye and wished him well in whatever lay ahead for him. Then his wife, many weeping friends and relatives, and even two small dogs began their own goodbyes.
The other resident deep in the process of letting go today was the woman who doesn’t speak English. Each day that I’ve seen her over the past weeks, her body has become tinier as her tumor has become larger. The emerging bones in her face reveal a beauty that shines through the illness. She is diminutive yet not emaciated – a soft tiny dumpling of a woman with beautiful, hollowed eyes and cheekbones. Today her devoted daughter held her, talking and singing to her in their language, their faces close together, the yellow patchwork quilt glowing on the sunlit bed. The powerful loving bond between them creating a tangible testament to all the stories of their relationship that I do not know. The daughter and I hug too and she weeps, her tears unstoppable. I want to stay with both of them, to be there when the woman I’ve spent so much time with in loving silence finally passes; yet my shift has ended and part of my work there is to love and let go.
As I leave the Zen Hospice Project’s Guest House, my heart is still tethered to the dying two and their loved ones, and to the nurses and volunteers I work with, and to the other residents – current and past, and to the gorgeous old house itself. I walk downhill on the tree-lined street and this connection expands further to my own friends and family, to this city and beyond. Loving and letting go in this intimacy with life and death.
Written by Celeyce Matthews for Zen Hospice Project and Legacy.com. This article was originally published in March 2016. Celeyce is now a Certified Nursing Assistant at Zen Hospice Project’s Guest House. You can find the original article published on Legacy.com here.
“Why are you volunteering at a hospice? Isn’t that a place where people go to die? Sounds incredibly depressing.” These were my sister’s words to me when I told her about signing up for the volunteer program at Zen Hospice Project in San Francisco. This attitude towards the topic of death is not very uncommon. More than just a taboo, it just makes for an unpleasant, or rather, a heavy discussion which people may want to avoid and quite understandably so. The fear of the unknown can be terrifying, isn’t it? So, why was I gravitating towards volunteering at such a place?
Having graduated with a Masters’ degree in business with Digital Marketing as a specialization in the US, I had begun to search for meaning in my choice for a career path. It gradually dawned on me that I couldn’t ‘market’ something I didn’t myself believe in. An easier choice would have been to get behind a big well-known brand or sell a lifestyle product to the masses, as any young marketing professional should aspire to. But I asked myself, “Should I be creating wants rather than fulfilling needs for people?”
It’s at this cross-road, I found the opportunity to work for a hospital group in Dubai, where I was born and raised. Serving as a marketing and communications coordinator there, I found myself learning about the concepts of long-term care for chronic conditions and rehabilitative care for patients recovering from strokes and brain injuries. On the job, I also got the opportunity to interact with the patients, or Residents – as they were referred to, at the hospital facilities and their families too. Working with the Residents and highlighting the stories of them re-connecting with their families through Collaborative Art Therapy and Pastoral Care struck a chord with me. It truly gave me a window into the lives of these incredible people, who had an unwavering spirit, despite the disabling conditions that caused them to be admitted there as residents in the first place.
One day, during my research at work, I came across a Ted Talk titled – “What Really Matters at the End of Life?” by Dr. BJ Miller. His talk stressed on the importance of treating death differently than we typically tend to. It called for a move that pulls focus away from ‘curing at all costs’ in a hospital setting to ‘mindful care-giving’ in a hospice setting for terminal cases. It really got me thinking about the lack of awareness around palliative care as a concept in the middle-east in general. Perhaps this was due to limitations and prohibitions placed by culture and religious beliefs prevalent in the region. I realized that the hospital group I worked for provided services that were the closest available match in the country I resided in. However, it didn’t stop me from making a mental note to learn more about it. Upon moving to San Francisco mid-2016, I decided to give in to my curiosity and signed up for the ‘Mindful Caregiver Education: A Daylong Immersion’ offered by Zen Hospice Project. It was also my first step as a volunteer there – an intentional attempt on my part to learn more about how the continuum of care can carry over from the tail end of the disability spectrum, a concept familiar to me due to past work experience, to the end of life in a hospice setting.
It would be dishonest of me if I didn’t admit to romanticizing the idea of coming out from the course with a better understanding of death and a better handle over my own mortality. Having become more aware of the impending nature of death, while I grappled with my own health issues along with close encounters with the suffering of patients with serious illnesses and disorders, I was curious to see how this course could impact me. I found myself in a room full of strangers, who brought with them their own personal journey around the loss of a loved one and the opportunity or lack thereof for them to take care of their dear ones by the bed-side. To say that it made for an intense environment would be an understatement. I wasn’t prepared for it. As the course commenced, I began reconciling my own views on care-giving in a hospice setting with the actual experiences shared by others during the course. It quickly became clear that using empathy as a lens to care-giving was just the tip. Through the core concepts discussed in the course, I grew to learn how important it was to be aware of one’s own state of mind and the perceptions, biases and projections one may bring with along with oneself as a care giver for those so close to dying. By virtue of sheer life experience, it only seems natural when that happens. It was stressed upon us that it was key to remove such biases in care-giving. The course also involved a very emotionally intense exercise, during which we were made to experience different ways and forms of loss that one deals with when one is actively dying. The room was brought to a palpable and complete silence as we imagined every aspect of our own lives being stripped away from us – the roles we play, relationships that bind us, material possessions we care for, activities we love to do and our sense of self.
From realizing the volatility and vitality of life to grappling with finding calm, peace and restfulness in letting go, the exercise taught us how to have a better awareness, if not a reminder, of the temporary nature of our existence. The course also taught us to be present in the moment through silence and meditation for the patient and their family, so as to soften the turmoil that an impending death can inflict on the lives connected to it. I also got the chance to revisit my own mortality through a different approach. And, with it came a sense of gratitude for what I did have and compassion for others and their suffering. It was agreed within the group after the exercise that for each one of us, priorities seemed to shuffle in the order of relationships and experiences taking utmost importance above material wants and desires. An acceptance of our own impermanence washed over us freeing us from worries that now seemed trivial.
Accepting death to be just as much a part of our existence as life itself, can be a very intense yet liberating feeling. Using this learning as a tool for navigating life with the limited time we have on this planet can make for a fuller, richer, and more complete living experience. This course is not only meant for those looking to provide care at a hospice or at home for a loved one, its meant for learning the art of caring for yourself, others and finding meaning of life in death.