From Our Blog

For the second year in a row, Zen Caregiving Project Executive Director, Roy Remer was a guest speaker at the Infinito Conference on Living and Dying in Sao Paulo, Brazil. This weeklong event brought attendees from all over Brazil to talk about palliative and end-of-life care. In the Economist Magazine’s 2015 Quality of Death Index, Brazil ranked 42/80, and the US ranked 9th. There is a group of committed individuals in Brazil who are working to change the status of palliative care in the country.

Infinito co-founder and organizers, Tom Almeida and Dr. Anna Claudia Quintana attended a Zen Caregiving Project Mindful Caregiving Education course in 2017 in San Francisco. Soon after Tom invited Roy Remer to attend the 2018 Infinito Conference.

This year, with other international speakers, Roy Remer presented on the main stage. Roy’s talk, Hospice Volunteering: Transformation through Service, shared the transformative power of serving at the bedside of persons living their final days of life.

In addition to the mainstage presentation, Roy led a daylong Open Death Conversation workshop for thirty participants. According to Roy, “There is a great hunger for activities and engagement around the topic of death in Sao Paulo. The palliative care movement in Brazil is just beginning, but I believe we in the US can help shorten the timeline of developing an impactful hospice and palliative care movement.”

Roy is also supporting the process of creating a residential hospice facility in Sao Paulo. During his time in Brazil, he visited Clinica Florence, a 37-bed respite and hospice care facility in the city of Salvador.

There he spent time with staff sharing the Zen Caregiving Project approach and leading them through mindfulness and loss activities.

“Clinica Florence is a beautiful facility, though its uniqueness is really in the way senior management is creating a culture of compassionate and mindful care. I am confident the Clinica Florence model will spread throughout Brazil.“

The deepening relationship between Zen Caregiving Project and Infinito in Brazil represents how we are spreading our impact beyond the Bay Area.

“I’m from San Francisco, am the elder of two daughters and have been blessed to be happily married for over thirty years. Two and a half years ago, my father suffered a massive stroke, and I was thrown into the ‘world’ of family caregiving. Last year I learned about the Mindful Caregiving Education program. Until then, I hadn’t even identified myself as a family caregiver!

My healing started the moment I began the course. Once the session commenced, it was clear that in addition to being wise and highly skilled, the facilitators’ personal family caregiving experiences informed their approach to their teaching. Their ability to be fully present with each participant was both powerful and rejuvenating. One day after the course, I was driving my father to an appointment, and he was talking about a sad time in his life. I became aware of my urge to “help him” remember happier times. I realized that I was trying to avoid feeling pain. However, in doing so, I would have inadvertently shut him down, thereby not provide him the opportunity to grieve and perhaps come to a place of acceptance and reconciliation with his past experiences. I believe that MCE has helped increase my self-awareness and supported an immediate shift in my behavior. For me, this was a profound moment. I hope that my father was able to feel both valued and validated.”

Irene Smith is a Guest Instructor on our Mindful Caregiving Education Program, who also leads Touching Moments courses for caregivers.

I have provided massage for medically frail persons and taught caregivers mindful touching as an integral component to the delivery of everyday caregiving activities for 36 years. I stay amazed at the profoundly positive outcomes of what seems to be the most organic gesture in the caregiving relationship, the act of touching.

Touch is the first sense to develop in our bodies and may be the last sense to fade. Touch is a natural form of communication; as organic a need as food and water, and a natural healing act.

Research from the Touch Research Institute in the Miami School of Medicine proves that the seemingly simple touch of a hand can stabilize heart rate, lower blood pressure and stimulate the release of endorphins, the body’s natural pain suppressors. Therefore, as caregivers, we have the ability, through focused or mindful touching, to assist in bringing physical comfort to medically frail persons.

Mindful touching requires the caregiver to first become aware of the touch facilitated through daily caregiving activities; feeding, dressing, changing, wound care, turning a patient in bed, brushing hair, swabbing the mouth, making a transfer from bed to a chair, etc. With awareness of the touch component within these activities, one starts to realize that these activities and procedures are touch sessions. These caregiving activities are opportunities for cultivating comfort. They also deepen trust in the caregiving relationship with the integration of mindful touching.

Bringing awareness to the touch aspect within the act of caregiving also includes being aware that the caregiver’s eye contact. Noticing the tone and cadence of the caregiver’s voice is also vital to the touch relationship. Bringing a mindful presence into physical touch can transform the caregiving experience for both the caregivers and the medically frail person.

Physical comfort; however, is only part of the equation. The emotional support that is provided by mindful touching offers a significant contribution to the daily coping strategies in care for the medically frail:

*Touch provides the medically frail person with an opportunity for quiet reflection on one’s personal life experiences, and may also offer the opportunity for the release of feelings associated with these memories.

*Focused or mindful touch may also convey a message of being cared for, being safe, of being worthwhile, and being connected to a greater whole or community, thus creating a sense of belonging. The feelings of safety and of belonging to a greater whole help the medically frail person to develop a more positive relationship with his/her physical body, and in turn, with the process of advancing illness. Mindful touch helps to ease attitudinal symptoms such as anger, depression, and fear that complicate the ability to receive care and contribute to the experience of discomfort and pain.

*Mindful touch also reminds us of our loveliness. One afternoon a client of mine, Susan, called me from a hospital psychiatric unit and asked me if I could come over and give her a foot massage. Susan was in a deep depression. During the massage, I noticed tears running down her face, and a short while later she opened her eyes and reached out, took my hand. “Thank you, Irene,” she said. “This is the first time I’ve loved myself in a very long time.”

*One-on-one social contact provided through mindful touching assists in easing feelings of isolation and loneliness. Alleviating these stressors, which contribute to the experience of discomfort, in conjunction with the stimulation of endorphins elicits mindful touch as a viable partner in pain control.

*In some cases, the medically frail person will not have friends and family present to provide the kind of support that encourages feelings of emotional safety and nurturing. Mindful touch can serve as the missing family link by promoting these feelings.

*Being our first language, and possibly the last sense to fade, mindful touch provides a natural alternative method of communication if the medically frail person loses the ability to utilize verbal language. Mindful touch eases feelings of helplessness for the medically frail person, the family, and the health care team thus providing a path for re-establishing hopeful relationships. 

Within the fabric of caring, touch is the integral thread that weaves the physical, psychological, and spiritual aspects of the fabric together. Bringing mindfulness to this organic gesture of human contact creates what is truly the essence of comfort care.

Mary Doane, one of the Senior Instructors of Zen Caregiving Project’s Mindful Caregiving Education Program, discusses her path of service.

Introduction

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.

Integration

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 the breath, and simply being a centered presence in a 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.

Instruction

Five years into her volunteer service, as a natural fit for the program, Mary was invited and joyfully became a 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 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 meaningful to her personally, that she loves, and carries real value in the world.

Inspiration

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.”

ED Roy Remer spoke about our relationship with our own death at TEDxTahoeCity in September of 2016.

We all know we will die. Why do so few of us choose to cultivate a relationship to our own death throughout life? In this talk Roy Remer shares his thoughts and stories on keeping death close as a way to prepare and a way to live life fully.

We’ve recently uploaded the audio to SoundCloud of Roy’s talk, “Our Relationship to Our Own Death (and Life).”

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