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Mindful Caregiving Podcast
A Thriving Life Podcast Season 1 Episode 8
None of us knows how to die, and that’s part of what inspires Roy Remer in his hospice work. Roy has been both a caregiver and a care receiver in his lifetime. Since 1997 he has served as an end-of-life caregiver and educator, teaching Mindful Caregiving among other topics. He currently serves as the Executive Director of the Zen Hospice Project.
In this conversation with Catherine Hammond, he shares:
- How mindful caregiving can transform the experience when supporting a loved one.
- What conversations we need to be having with our loved ones around end of life, and when to have the conversations with a loved one with dementia.
- A template for how to talk about death with our loved ones.
- How to deal with the near-constant loss we face as caregivers
- What we learn from others through their dying process.
“My healing started the moment I began the course.”
“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.”
Mindful Touching as a Means of Comfort
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.
Rethink Death with Design-Thinking
A talk from our previous ED, BJ Miller, called “What Really Matters at the End of Life”. Already watched by over 9.5 million people, BJ speaks to the need for change in end-of-life care or as he said, “Not whether, but how”.
Reframing Our Relationship to That We Don’t Control
In this 2016 recording, BJ Miller, a previous executive director of Zen Hospice Project (as Zen Caregiving Project was known at the time), shares how he has reframed his life due to things that are beyond his control. BJ chats with On Being’s Krista Tippett about his personal journey around his focus on end-of-life and why you should do the same.
Mary Doane’s Path of Service
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.”
Exploring Death and Dying
RoundGlass: The End of Life Collective
The End of Life Collective is a community of caregivers and care seekers gathered in one place to help you and your family through life’s most important time.
A non-profit media platform and annual conference with the aim of normalizing conversations about our mortality throughout life. The website shares videos from leaders in all sectors who approach the topic of death and loss from many diverse angles.
ReImagine is a citywide exploration of death and the celebration of life through creativity and conversation. ReImagine will operate in San Francisco and New York over the coming year.
The Five Invitations: Discovering What Death Can Teach Us About Living
A book by Frank Ostaseski, the cofounder of the Zen Hospice Project and Metta Institute, who has sat on the precipice of death with more than a thousand people. He has trained countless clinicians and caregivers in the art of mindful and compassionate care. In The Five Invitations, he distills the lessons gleaned over decades of selfless service offering an evocative and stirring guide that points to a radical path to transformation.
A short documentary following the stories of three visionary medical providers, one of which is Zen Hospice Project, caring for and supporting those approaching the end of their lives.
A book by long-time hospice volunteer, Jennie Dear, who uses the latest medical findings and sensitive human insights to offer answers to questions that affect us all like Does dying hurt? and Is there a better way to cope with dying?
At a Death Cafe, people drink tea, eat cake, and discuss death. You can search for the next cafe anywhere in the world. They also offer numerous resources on death and dying.
An interactive toolkit to help you set up and host a dinner to discuss death with friends and family. The website provides videos, articles, and thought-provoking questions. Even if you don’t end up hosting a dinner party, it will get you thinking.
End of Life Doula Directory
A directory of certified end-of-life doulas thoroughly trained in all three phases of end-of-life care.
A company offering interactive and collaborative remote memorial services enabling five to 500 family and friends to memorialize, eulogize, and celebrate a deceased loved one. From afar, family, friends, and community will virtually attend your loved one’s end-of-life celebration.
Learning More About Mindfulness and Meditation
We are pleased to support your caregiving with a variety of guided meditations led by our Mindful Caregiving Education instructors. You will find three-minute, five-minute, and ten-minute long meditations on our Resource page.
Mindfulness and meditation don’t have to be complicated. Our advice: start small, with a few moments daily where you mindfully follow your breath and grow from there. Below are some resources to support you on your journey.
Mindfulness: Finding Peace in a Frantic World
Created by meditation teacher Dr. Danny Penman, and Clinical Psychology Professor Mark Williams, this website gives a simple overview of mindfulness and provides resources and apps for those who want to explore further.
A website that explores the latest scientific research into mindfulness and meditation, and how they can be used in our daily lives. The site also shares interviews with leading researchers in the field of mindfulness, meditation, and compassion.
Written by Jon Kabat-Zinn, this book offers a step-by-step introduction to the practice of mindfulness and how to cultivate mindfulness in the face of stress, pain, and illness. You can find videos of Kabat-Zinn’s meditation teachings on his website.
With Nonviolent Communication (NVC) we learn to hear our own deeper needs and those of others. Through its emphasis on deep listening—to ourselves as well as others—NVC helps us discover the depth of our own compassion. This language reveals the awareness that all human beings are only trying to honor universal values and needs, every minute, every day.
NVC can be seen as both a spiritual practice that helps us see our common humanity, using our power in a way that honors everyone’s needs and a concrete set of skills that help us create life-serving families and communities. The form is simple, yet powerfully transformative.https://www.cnvc.org/
This free app has guided meditations, a timer, and the option to show who else across the globe is meditating at the same time as you are.
This meditation app offers a free 10-day beginner’s course that guides you through the essentials of meditation and mindfulness.
The SF Zen Center has in-person beginner’s introductions to meditation while also sharing videos of talks and teachings online.
Upaya Zen Center in Santa Fe, New Mexico offers daily Zen meditation, weekly dharma talks, and programs on Buddhist teachings, art, neuroscience, and social engagement. The center also provides professional training for end-of-life-care and Buddhist chaplaincy.
Grief Support Resources
A website and book authored by Frank Ostaseski, the co-founder of the Zen Hospice Project. Based on Frank’s own experience of working in hospice care, he offers a unique, comforting, and practical wisdom on how to work and live alongside grief in your life.
A website created by David Kessler, one of the world’s foremost expert on grief and loss. It provides free resources on loss and grief, connections to grief groups and an overview of the Five stages of Grief.
In this book, the psychologist and Buddhist Sameet M. Kumar offers an alternative approach to grief: accepting and feeling it, and then using it as opportunity for growth and finding meaning.
A page with advice on grief and loss and how to navigate it. This guide also offers links to other useful information in the “resources” section.
In this book The Wild Edge of Sorrow: Rituals of Renewal and the Sacred Work of Grief, psychotherapist Francis Weller provides an essential guide for navigating the deep waters of sorrow and loss in a lyrical yet practical handbook.
A non-profit that offers a wealth of resources and services to support children, teens, families, and adults in the grieving process.
A collective of men and women in their 20’s – 30’s who’ve been touched by a significant loss who host dinner parties to share a meal and discuss loss, grief, death & dying.
Breathing Wind is a podcast about grief, parent loss, change, and healing. Founded by Sarah Davis, this podcast began as a collection of stories highlighting the shared experience of losing parents at a young(er) age. Season Two’s focus is on healing.
Support and Resources for Family Caregivers
This non-profit’s mission is to improve the quality of life for caregivers and the people who receive their care. Their website has an online learning center and links to many other resources such as in-person support groups.
CAN (the National Family Caregivers Association) provides articles, videos, and peer support to family caregivers across the country free of charge. They cover a broad range of topics from practicalities such as medication and nutrition management, to caregiver self-care to navigation of the medical system.
Better Health While Aging provides actionable information for older adults and family caregivers, grounded in what geriatricians believe to be optimal healthcare for older adults.
A website to support families. The site has an active online forum where caregivers can share their experience and learn from others by asking questions, giving answers, or participating in a group discussion.
For those caring for loved ones with Alzheimer’s, this website has clear and easy to access information on practical and emotional elements of caregiving.
The caregiver page of the website has an interactive caregiver resource guide, articles, and videos on cancer-related caregiver topics, online communities, and links to other support groups.
AARP Local Caregiver Resource Guides
AARP has put together local resource guides showing what support is available for family caregivers in different states and different cities.
Imerman Angels support cancer fighters, survivors, previvors and caregivers by matching them with a “Mentor Angel” – a cancer survivor or caregiver who has faced the same type of cancer and who can answer questions and provide one-to-one support.
Next Step In Care provides written guides and videos for family caregivers that help them through any medical treatment – from visiting the family doctor, trips to ER, hospitalization and discharge and Homecare.
Companioa from the Institute on Aging
A paid-for service, to support caregivers of loved ones with dementia. This service pairs you with a personal “Care Coach”, a trained dementia expert. The Care Coach helps assess your loved one’s needs, map out a care plan and meet with you bi-monthly to discuss the plan and your needs.
On September 22, 2021, the Recognize, Assist, Include, Support, and Engage (RAISE) Act Family Caregiving Advisory Council delivered its initial report to Congress. It includes a comprehensive review of the current state of family caregiving and 26 recommendations for how the federal government, states, tribes, territories, and communities—in partnership with the private sector—can better Recognize, Assist, Include, Support, and Engage family caregivers.
Download the RAISE Family Caregivers Act Initial Report to Congress.
To learn more about how the council developed this report, check out the Implementing the RAISE Family Caregivers Act factsheet.