From Our Blog

The program

The pandemic has been a frightening time for everyone, but particularly those in healthcare. Healthcare professionals have cared for an overwhelming number of patients despite knowing little about the virus, how it works and the dangers it posed. They have also had to witness the suffering and death of high numbers of their isolated patients with little time to process or grieve, causing trauma and distress. Recent research indicates that a considerable proportion of healthcare workers have experienced depression, anxiety, stress, and sleep disturbances due to their pandemic experiences. 

To address this issue, 1440 Multiversity has designed a program called Healing Our Healthcare Heroes. The three-day, holistic residential program provides a place of rest and healing in which participants are offered a number of signature wellbeing sessions such as yoga and mindfulness and a core curriculum that explores Trauma, Resilience, Grief and Healing. Zen Caregiving Project partnered with 1440 Multiversity to design and deliver the Grief and Healing Session as part of the program.

Core elements of our Grief and Healing Session

• Introducing mindfulness as a tool in processing grief and loss. Loss can bring up powerful and uncomfortable emotions. Often our first response is to ignore them or turn away from them as they can be painful or unsettling.  This self-protection mechanism is often used by healthcare professionals who see multiple losses each day and yet need to continue their work.  Our session in Healing Our Healthcare Heroes shares how to use mindfulness to tune into the emotions of loss and grief, and explore them with curiosity.  Being with the emotions of grief allows for their processing. By building capacity to be with strong emotions, they become less disruptive. 

• Exploring how to use the body to integrate challenging emotions such as grief. We all experience emotions in physical ways: jaws clenching, fists tightening, heartbeat racing. In our session we share how to tune into these physical sensations as a way to bring oneself into the moment and ride out an emotional wave and anchor oneself to the moment. This is something that can be done easily and discreetly, at any point in the hospital or when seeing a patient. 

• Introducing the importance of Self-Compassion. Healthcare professionals are, by their nature, a compassionate group of people. They have been moved to devote their career to caring for and healing others. Often though, it is much easier to show compassion to others than to oneself. In the session we walk participants through a self-compassion exercise, reminding them that they, like other caregivers, have suffered during the pandemic, along with their patients, and they are deserving of their own self-compassion and kindness. In fact, self compassion is essential to build resilience and avoid burnout. 

• Using ritual for processing grief.  Ritual has been found to be extremely beneficial for processing grief emotions. In the session we explore different grief and loss rituals that could be used in a hospital setting, such as taking five minutes at the end of each day to sit quietly and wish well to those people you have seen that are suffering, or those you have lost. In the session, the instructor also invites participants to take part in a grief ritual, allowing them to remember those that they have lost and to be witnessed in that loss. 

• Connection and sharing. As with any course we offer to caregivers, connecting with others who have shared experiences is a vital element of the session. Healthcare workers have an opportunity to share stories and experiences they haven’t previously been able or willing to, as they are among others who understand and deeply empathize. We ensure that our session includes time for participants to share their experiences and interact. These connections both reduce isolation and aid with the healing process. 

The Healing Our Healthcare Heroes program launched on April 30 and continues to run with the generous support of healthcare foundations, private donors and philanthropic foundations. This partnership will reach at least 735 healthcare heroes by the end of 2021. If you are interested in contributing to this program as a donor or sponsor, please email CreateHope@1440.org.

Bethany Becker joined the ZCP Board of Directors in April 2021. She is a ZCP Volunteer, Senior Director of Marketing at Plume, and the owner of an adorable puppy called Ned. Here she tells us a bit more about how she got involved with ZCP, her experiences with caregiving, and the opportunities she sees for ZCP in the future.

How did you originally hear about ZCP and what drew you to the organization?

I first read an article about Zen Caregiving Project (then known as Zen Hospice Project) in early 2017 and something immediately clicked with me. The organization and its mission resonated in part due to my own experience with my grandmother’s death in 2015. That was my first time witnessing someone at the end of their life and actively dying. We were very lucky to have in-home hospice, with a comforting nurse who demystified the whole dying process. She transformed the experience for my entire family. 

When I learned about Zen Hospice Project, I realized that there was a whole movement around caring for people who were ill or reaching the end of their life, and that was a real revelation for me. 

What’s your involvement been with the organization?

Having read the article, I knew I wanted to get involved with the organization in some way. I attended some of ZCP’s courses, including an incredibly powerful Open Death Conversation. In that session, there was a young person dealing with a cancer diagnosis and a resident from the Guest House (the hospice facility that ZCP used to run) who was there with her family. It re-emphasized the importance of the organization’s work.

After that session, I started helping out at workshops and events and volunteered my skills in marketing and strategy to support the office team. I completed my bedside caregiver training through the Volunteer Program in May 2019 and have served as a volunteer caregiver since then. 

What excites you about being on the Board and what do you hope to bring to the Board?

Having witnessed the positive impact of the Volunteer Program on both residents and volunteers, I believe strongly in ZCP’s mission to support caregivers. Being part of the Board allows me to give back to the organization in new and important ways and support them in this mission. I try to bring the perspectives of a volunteer, caregiver and marketing professional to my role on the Board. 

The organization has gone through change and growth in the last few years, including a change of name and a broadening of scope to include supporting people and their caregivers at all stages of the illness journey. I hope to support this continued development and growth as ZCP evolves. Raising awareness and providing support at the end of someone’s life is vital, but in the time we are living in, caregiving more generally is equally important. 

What do you see as the big opportunities for ZCP?

I think ZCP has a very important role to play in raising awareness of the caregiving crisis we are in right now. Professional, clinical and family caregivers who support our society are taking on multiple roles, but their work is often invisible, undervalued and inadequately supported. Caregivers are burning out and don’t have the resources they need to care for themselves or others. Nearly all of us will be caregivers at some point in our lives, so it is crucial to bring awareness to the important, rewarding, challenging and very human work of caring for another person. 

Zen Hospice Project played an important role in raising awareness about end of life and palliative care, and pioneered a new and more holistic approach to the dying process. The approach emphasized meeting people where they were and providing emotional and spiritual support beyond pure medical care. It is my hope that Zen Caregiving Project can similarly help change the conversation around caregivers. Caring for a caregiver helps everyone, including the person they’re caring for, their family and their employer. 

Over the course of ZCP’s lifetime, the organization has built up a great body of knowledge, resources and practices. There is so much valuable learning and collective experience from the years it has operated, the cohorts of volunteers that have served and the range of teachers that have shaped the organization. This wealth of deep knowledge has led to the development of the Mindful Caregiving Education curriculum that is already being used in many ways across different populations. There is a huge opportunity for ZCP to expand this content to a wider audience that could benefit from its teachings.

How has your experience with ZCP influenced your own caregiving?

For me, the Volunteer Program training was incredibly powerful, as was serving by the bedside in Laguna Honda Hospital. I learned that there often is no “right” thing to do or say. Sometimes you can’t make things better, but the point is being there, fully, for someone in that moment. Just being present. 

This experience helped me a lot when I cared for my mother after a very serious neck and back surgery. I was her caregiver for two months and had a totally different level of patience and understanding with my mom than I would have previously. And I also had more patience for myself! My experience with ZCP prepared me to be a better caregiver for others, and that is partly because it taught me to also take care of myself.

If you like what you read, please join us and enroll in one of our courses, share our work with someone you think will benefit from it, or support us through a donation.

Curry Senior Center is a non-profit in San Francisco dedicated to helping vulnerable, low-income, and homeless seniors through a holistic and integrated care approach. The organization runs a Peer Outreach Program in which Peer Outreach and Drop-in Center Specialists help connect isolated older adults to services and social activities.

Working with a vulnerable older population, the Outreach Specialists often witness their clients experiencing multiple losses, for example, loss of mobility, loss of social connections and loss of their own living spaces as they move to assisted housing. During the pandemic, however, the losses experienced by the staff and clients intensified, with a number of clients passing, and the Curry team also losing a member of staff to COVID-19.

To support their staff with such losses, and to prevent burnout and overwhelm that can accompany such experiences, Curry Senior Center approached Zen Caregiving Project (ZCP) to run two online, interactive sessions on managing loss and grief. 

The sessions

Working with loss and grief is a core part of Zen Caregiving Project’s approach to caregiving. When the organization was first established as Zen Hospice Project over thirty years ago, it served people approaching the end of their lives, and provided hospice care. Offering on-going support for persons at the end of life, the organization advanced a Buddhist-inspired approach to working with loss and grief, allowing individuals to both feel the emotions that loss brings, and also build the capacity to sit with the loss and reduce overwhelm. 

The sessions for the Outreach Specialists were based on this approach and were taught by Roy Remer, the organization’s Executive Director. Across the sessions he introduced five ways to working mindfully with loss:

1. Loss is universal

It can be comforting to remember that loss is a natural part of being human. While the particular circumstances of loss may differ from person to person, we all experience loss. It is unavoidable. If nothing else, the shared experience of loss is what reminds us that we are connected to everyone else. 

2. Understand the value of exploring our feelings on loss

It is important to be aware of how we respond to our own losses, especially as caregivers. When we don’t work on how to process our own losses, it can be difficult to fully support the person receiving our care. Others’ experience and reactions to loss may be triggering for us, and it is hard to untangle the pain and emotion of their loss from the pain and emotion of our own losses. 

3. Introducing mindfulness to work with grief and loss

Often our first response to grief is to deny it or turn away from this. Mindfulness techniques can be used to turn toward grief, allowing us to see what sensations and emotions are felt, and what thoughts we are having. Being with the emotions of grief allows for their processing. We can build our capacity to be with strong emotions and over time the emotions will begin to quiet. The sadness of loss may not go away, however, we may begin to find it is not as disrupting  or overwhelming. We begin to integrate the loss into the normal rhythms of our life. 

4. Building compassion in the face of frequent loss

Caregivers may confront a lot of barriers to expressing compassion – these barriers can sometimes be exhaustion, hunger or frustration, and sometimes it can feel like what we are doing doesn’t make a difference. A deeper understanding of the dynamics of compassion and the ways it can be used enable us to more readily recognize and overcome barriers when they arise.  Practicing compassion means also including oneself.  Self-compassion is essential for caregivers to build resilience and avoid burnout: “you can’t pour from an empty cup.” (see our free webinar on compassion for caregivers)

5. Inviting conversations about loss with those we are care for

Conversations with care recipients about loss can feel awkward, but there are ways of approaching these conversations that help the other person open up, and feel supported. It is helpful to remember, in the face of loss we are all equals as no one can avoid personal loss and grief. In this regard, we are all alike. This thought naturally brings feelings of empathy and compassion for the person we care for. It is also helpful to notice if you are attached to a particular outcome for a conversation and perhaps let go,  trying to meet others where they are at. Maybe the person you care for isn’t yet ready for a big conversation on loss but providing an opportunity, may support them to get more comfortable with it over time. 

For a more detailed explanation of these five approaches please see our blog on approaches to loss.

The impact of the sessions

The sessions were deeply moving for all involved, with Curry staff sharing and connecting over common experiences and recognizing their own unique relationship with loss. The feedback we received from the session was very positive and it is our hope that the training will continue to support these staff persons in the important work they are doing in the community, as well as in their own personal wellbeing.

We would like to thank the Curry Senior Center for its holistic and compassionate approach to supporting its staff. For any enquiries on running sessions in your organization please contact us via our enquiry form.

We all experience loss and grief throughout our lives, but as caregivers loss can be very prominent in our day-to-day experience. Caregivers experience our own loss and also witness the losses experienced by the person we care for, e.g. loss of physical or mental health, loss of work, loss of social role. 

In the 30+ years since our founding, we at Zen Caregiving Project have learned a lot about loss and grief while caring for others through our work supporting people living with a chronic and terminal illness. We have developed a Buddhist-inspired approach to facing inevitable loss which we believe can support caregivers to more easily withstand the strong emotions that loss can bring.

Five approaches to exploring and working with loss and grief

1. Remembering that loss is universal

It can be comforting to remember that loss is a natural part of being human. While the particular circumstances of loss may differ from person to person, we all experience loss. It is unavoidable. If nothing else, the shared experience of loss is what reminds us that we are connected to everyone else. 

2. Understanding the value of exploring our feelings on loss

We may not like the idea of looking into our own feelings of loss and grief but as a caregiver it is important. Why? Well, exploring our own emotional response to loss will help us to tell the difference between our own suffering and the suffering of the person we care for. By untangling our emotions from the emotions of our care recipient it makes it easier to decide what is best for the person we are caring for. 

For example, a caregiver is caring for her father who is experiencing memory loss. She experiences strong emotions around her father no longer remembering who she is or remembering who he has been for so much of his life. This caregiver’s relationship with her father is shifting into completely new territory, so such feelings are natural. When she is able to step back and look at the situation, she sees that her father is in fact not distressed. Since he is not very aware of what is happening, he is not upset by it. Actually, he seems confused when she tries to comfort him about his memory loss. She is able to see that perhaps comforting her father is more about her strong feelings than his. 

3. Using mindfulness in processing loss and grief

Experiencing loss and grief is not easy and can bring up powerful and unpleasant emotions. It is normal to want to avoid these feelings, push them away or pretend they are not there. 

A mindful approach to loss attempts to meet grief directly. We can learn to simply observe our natural response to loss, at that moment, without judgment.  We can become curious: where do we feel emotions in our body? What color are they? What texture are they? In this moment, what is the nature of our emotional landscape? When opening to our emotions in a given  moment we may feel sadness, resistance, anger, vulnerability. Over time, we can accept that such emotions are natural and okay, and welcome them all in. None of the feelings associated with loss are “wrong,” nor should they be excluded. 

Being with the emotions of grief allows for their processing. We can build our capacity to be with strong emotions and over time the emotions can begin to quiet. The sadness of loss may not go away. However, we may begin to find it is not as disrupting or overwhelming as before. We begin to integrate the loss into the normal rhythms of our life. (See our free webinar on Working Mindfully with Grief)

4. Building compassion in the face of frequent loss

Compassion is an essential part of caring for others, but there can be times when it is difficult to express compassion to the person you care for. Caregivers commonly confront a lot of barriers to expressing compassion, including exhaustion, hunger, frustration, and feeling like what we are doing is not making a difference. 

Cultivating self-awareness through mindfulness gives us the mental space and clarity to identify when we come up against one of the common barriers to compassion. In recognizing these barriers (e.g. hunger), we can more easily overcome them (e.g. prioritize getting some food). It can be helpful to remember that we are not alone in facing barriers to compassion; all caregivers will experience some version of these barriers from time to time. Struggling to maintain compassion is a common part of caregiving, yet compassion is like a muscle, the more we work with it, the stronger it becomes. 

 Practicing compassion means also including oneself. For many, it is easier to experience compassion for others than it is for oneself. However, self-compassion is essential for caregivers to build resilience and avoid burnout (see our free webinar on Deepening compassion in challenging times). 

“If your compassion does not include yourself, it is incomplete.“
– Jack Kornfield

5. Inviting a conversation with those we are serving

Conversations with care recipients about loss can feel awkward, but there are ways of approaching these conversations that support openness and care. We suggest approaching the conversation as a peer; another human being who experiences loss and grief. In this regard, we are all alike. Being aware of this common experience naturally brings increased empathy and compassion for the person we care for and can also make us feel more comfortable talking about loss with them. 

It is also helpful to notice if there is attachment to a particular outcome for a conversation and if so, try to let go of any goals and follow their lead. This will make it easier to meet others where they are. If the person we care for isn’t quite ready for a big conversation on loss, we can start by talking about change. This can provide an opening for a bigger conversation on change and loss in the future, if that’s where the care recipient wants to go as they get more comfortable with the topic.  

On a more practical level, we can set an intention to listen generously. This includes giving our full attention, using open-ended questions, allowing for silence, and checking our eagerness to express our own thoughts. 
We at Zen Caregiving Project hope that these approaches to working with loss help in your caregiving journey. We have more free resources on mindfulness and loss on our Resources pages, and our Mindful Caregiving Education courses also explore this important topic in a group setting.

John Rubin was a volunteer with Zen Caregiving Project for 11 years, serving at the bedside in the palliative care ward at Laguna Honda Hospital. He ended his volunteer service in 2020. Here he shares his story, and what he learned over his many volunteer shifts.

“In 2009, I was 72 and had just retired from a long career in business. I was looking for an activity that was different from my previous work and helped others.  The Volunteer Program at Zen Hospice Project, as it was then known, seemed the perfect fit. Every Tuesday morning for the next 11 years, I would make my way to Laguna Honda Hospital to visit the residents (patients) of the Palliative Care Ward, never knowing what the morning would bring.  

My 11 years with Zen Caregiving Project (ZCP) were rich and wonderful. The many residents I got to know were people I would never have met elsewhere in my life. What a gift to share time each week with them, the hard-working ward nurses, CNAs, and staff, and my many great ZCP shift mates. And so I wanted to share a few things that I learned from the experience, for current volunteers, anyone considering joining or actually, everybody! The experiences on the ward are just a microcosm of our experiences in our wider lives filled with connection, joy, loss and love.

• Bring your whole self to what you do
  
  Volunteering with ZCP is about bringing your whole self to the residents, and leading with an open heart. My best moments volunteering came when I was totally focused on a resident. For example pushing a lady’s wheelchair back to the ward after a morning Baptist church service, while together humming and singing Amazing Grace. In that moment I knew “this is why I’m here today.” It helped me see that I can bring my whole self to whatever I am doing in life, focusing on the “here and now”. 

• Drop expectations
  
  Just like in life, it was best not to come to a volunteer shift with a lot of expectations of what you want to have happen, and avoid giving yourself a grade afterwards about how things actually turned out. You learn to just let the day play out, and deal with whatever comes up.

• We have to accept change 
  
  I learned a lot about impermanence. No shifts are ever the same. Patients who you get to know well, like to spend time with, and grow to love are going to die. It’s a world of constant flux and change. Everything changes.

• Listen
  
  Our role as a volunteer is to Be With people rather than trying to Fix things that are out of our control. Our value as volunteers comes in just being with people and listening deeply to them. The stories patients share with you are what they want and need to say. Whether they’re true or not, doesn’t matter. What matters is that they are being heard.

• Be yourself
  
  You are unique, and you will do things differently from others. In volunteering, we all had our different approaches – different but no better or worse. Just be yourself and bring energy, warmth, and loving-kindness to everyone you interact with.

• We are all in this together
  
  We’re all in this life together. It’s good to realize that we may be the one in the bed at some future time with someone else being our caretaker. What would we want then?

The ZCP Volunteer Program is currently continuing remotely, with residents speaking with volunteers by iPads. 

To read more please see our blog from a volunteer on her experience of connecting virtually and another on how the volunteer experience has helped during the pandemic.

The end of February marked a significant milestone for Zen Caregiving Project (ZCP) and a team of four Facilitators-in-Training from Zuckerberg San Francisco General Hospital (ZSFG). The four facilitators finished their 11-hour training on our Mindful Family Caregiving course as part of a pilot Train-the-Trainer program with ZSFG. The trainees came from a range of backgrounds, including hospital chaplaincy, clinical social work, and healthcare consultancy, and all brought enthusiasm, thoughtfulness, and touching compassion to the training. 

The Train-the-Trainer program is designed to introduce a sustainable family caregiver support program into healthcare systems. It involves training a cohort of staff members in facilitation skills and providing them with a comprehensive set of materials including lesson plans, hand-outs, and videos, to support them in the delivery of six Mindful Family Caregiving modules. (Read more about the program here.)

 Having completed the training, we asked the facilitators three questions about their training experiences, and here is what they shared:

1. What is the most important thing you have learned from the training so far?

For some facilitators the most important thing they learned was about  family caregivers:

“ I have learned about the deep love and compassion the caregiver has for the person they are caring for, and that they desire to put aside themselves for the needs of their loved ones.”

Others spoke of learning how mindfulness can be useful for caregivers in their caregiving role. While others shared that for them, it was the mindfulness practices they had learned that were most important including giving themselves the permission to pause when feeling overwhelmed, and dropping the pressure to respond to people’s emails, demands and text messages.

2. What is the most surprising thing you have learned from the training so far?

For two of the trainees it was the simplicity of mindfulness that was most surprising, and that such a simple technique could be so helpful in navigating the challenges that we all face.  

“I didn’t think I would grasp the concept of meditation because I always thought it was too abstract, but I finally found understanding for its purpose and the difference it can make in getting through the grind of daily living.”

For another, it was the way in which mindfulness can help caregivers with their challenges:

“This training has taught me the importance of the caregiver taking the time to sit with themselves and notice what is happening with their physical and emotional self. This is how they can build resiliency.”

And for another it was how needed mindfulness was, having learned that the average human’s attention span is 8 seconds (and decreasing!)

3. Are you already using anything you learned in your daily life?

All of the facilitators were using mindfulness activities in their lives having completed the training. Some were using it as a way to reduce stress and anxiety: 

“Daily check-ins and mindfulness are something that I practice regularly to make sure that I maintain a balance between work and self-care so I don’t become overwhelmed by stress.”

Others were using Mindfulness exercises that related to loss, helping them see how certain losses continue to emotionally impact us long after they have happened.

Another trainee shared how, as taught in the Mindful Family Caregiving course, they were using daily activities as a chance to practice mindfulness: 

“I am trying to remember to practice mindfulness as I experience my day. Being mindful with activities I engage in; bathing, eating, brushing my teeth, walking …”

Next steps

Now that the facilitators have completed their 11-hours of training they will observe ZCP instructors teaching the Mindful Family Caregiving course online to family caregivers of patients at ZSFG. The facilitators will then have the opportunity to deliver their first Mindful Family Caregiving course in June 2021.

We want to thank the facilitators for their dedication to the training, their enthusiasm for the project and their compassion towards others in the role of family caregiver. 

For further information on the Train-the-Trainer program please contact naomi@zencaregiving.org.

The need

Our Mindful Family Caregiving program teaches practical, mindfulness-based tools and techniques to help build caregivers’ emotional resilience, and protect them from overwhelm and burnout. But until recently it was only delivered in English, making it inaccessible to a whole section of the caregiving population in the US.

In 2020 we completed a project with the non-profit the Chinese American Coalition for Compassionate Care (CACCC) to translate our Mindful Family Caregiving program into Mandarin. CACCC has already run 7 courses in Mandarin and has reached over 200 people.  (See this blog for more detail)
After the success of our work with CACCC, we turned our attention to Spanish-speaking Latino caregivers, another large caregiving population. There are estimated to be 9 million Latino family caregivers and census data from 2010 – 13 showed that of the 13% of the population (37.5m people) that spoke Spanish at home in the USA, 44% spoke English “less than very well”.

Our approach

We took a two-track approach to our translation. Our first track was finding someone who could teach our course in Spanish. We were looking for someone with a deep mindfulness or Zen practice, who was also a fluent Spanish-speaker. And we found her – our trainee teacher is a highly competent Zen student, with Spanish as her native tongue and who has direct experience of caregiving.   This trainee will undertake 20+ hours of training in Mindful Family Caregiving with ZCP, along with multiple observations of teaching and being observed teaching herself.  

Our second track was adapting our course to make it culturally and linguistically appropriate for Spanish-speaking Latino caregivers. We have started this process by organizing discussion sessions with staff from Del Mar Caregiver Resource Center, and Promotores connected to Hospice of Santa Barbara who all work closely with Spanish-speaking Latino caregivers. We will be asking them about the unique needs of Latino caregivers, their barriers to support, and what activities, concepts, and language need to change in our course to be relatable for Latino caregivers. 

After these discussion groups, we will make changes to our course, and with the support of our trainee, we will translate the entire course and handouts into Spanish. Once translated we hope to run our course, in Spanish, for the communities of the Del Mar Caregiver Resource Center, and those connected to Hospice of Santa Barabara at the end of 2021.

Further information

If you are working with Spanish-speaking family caregivers and would like to discuss a partnership with ZCP, please reach out to naomi@zencaregiving.org. 

We would like to express our gratitude to Susan McLaughlin for generously funding this project and making it possible.

We get a lot of positive feedback on our Mindful Family Caregiving program. We hear the comments from family caregivers in our sessions, sharing how the course has helped them, and we read in our course evaluations about the value of the course to those who take it. But while individual feedback is a good indicator that you are doing something right, it isn’t very reliable. For example, there is a chance that you are not hearing from people who didn’t like the course, with only those who liked it filling in the evaluation. And maybe people say nice things to the instructors in the course out of politeness rather than because it was what they felt.

That’s why we wanted to run a robust Caregiver Study, supported by academics, to collect a higher standard of evidence. This study will allow us to have more confidence in the results we find, and be more certain the results aren’t based on chance or other factors like politeness.

The need for better quality evidence

There are many reasons why we wanted more reliable evidence of the impact of our course. First, we want to know what is working and what isn’t so that we can improve our course and make it even more effective in supporting caregivers. Second, other organizations such as healthcare providers and corporate organizations are becoming more interested in our courses to support their members. These organizations, however, want proof that our course does what it claims to do, and that’s where our evidence will come in. And finally, we want to contribute to the small but growing evidence base on the benefits of mindfulness for caregivers.

The Study Design

We started by talking to the experts, Professor Janice Bell and Professor Philippe Goldin from UC Davis and Michael Juberg from the University of Hawaii. With their help, we decided on a list of areas we wanted to measure, including wellbeing, stress, anxiety, and also more qualitative data like how people are using what they learn in the sessions. 

We then drew a study design (below) that captures data on these areas at four different times – a month before the course, immediately before the course, immediately after the course, and a month after the course.

This design allows us to compare any changes in a person in a month when they don’t take our course (comparing Survey 1 to Survey 2), against the changes they show in a month when they do take our course (comparing Survey 2 to Survey 3). 

Our final step was creating our surveys, and getting our design passed by the Institutional Review Board at UC Davis, which ensures that our study was safe and would cause no harm to participants.

Launch time

We had a very positive response to our recruitment with over 200 people applying to participate in the study. We had to close registration early due to demand. All 144 participants have now received their first survey and will begin their course in April 2021.

What we will do with results

Once we have all our results in, we will analyze them to understand where the course has an impact, and if there are any areas that the course is particularly helpful e.g. stress reduction. We will also be able to see if the course is more beneficial for some groups of people over others e.g. does our course do more good for those who spend more time providing care? 

We will write up our results and share them widely so that other organizations can see the benefits of our course and learn from our study design and implementation.  We will also use the see where we can adapt our course to make it even more effective. 

We hope to run further waves of our study in the future to add to our data and increase our knowledge. If you are interested in participating in a future study please sign up here. If you are interested in working with us on a study, please email sarah@zencaregiving.org. 

We’d like to thank the Stupski Foundation for their generous support of the study, Prof Janice Bell, Prof Phillippe Goldin, and Michael Juberg for sharing their time and knowledge so generously and everyone who shared our study with their community, enabling us to reach such a large family caregiving audience.

We meet many family caregivers in our Mindful Caregiver Education courses. Apart from being in the role, what unites most people who join us is the struggle caregiving presents in their already busy lives. For many caregivers, particularly those who are in high strain situations, caring for a loved one can negatively impact physical and emotional well-being. Our courses focus on teaching emotional skills that help mitigate the negative impacts of caregiving.

Caregiving can be deeply rewarding; however, it can also cause intense suffering in one’s life. Many of the caregivers we meet are caring for parents, children, and/or spouses while working full-time jobs. Many have reached a point of overwhelm and even hopelessness. I have found that it can be helpful to reframe the caregiving experience as an initiation or rite of passage.

Rites of passage mark a particular transition in one’s life. It is a doorway that is entered to pass from one stage of life into another. Every culture around the world has some form of rite of passage. When the French ethnographer, Arnold Van Gennep, studied rites of passage in various cultures, he found a common pattern. Rites of passage or initiation rites always follow three stages; severance, threshold, and incorporation. We can identify these stages when we look at caregiving through the lens of rites of passage.

Family caregiving often separates the caregiver from his or her usual activities and extended community. Over time there is a distancing from the life the caregiver once knew, a severance in fact. We see this with elder caregivers caring for a spouse. Social isolation is a common issue faced by family caregivers. Often, the demands of the role get in the way of healthy socializing. Many of the caregivers I have met feel that their friends either do not understand the demands of caregiving or do not want to hear about it. Often, when a caregiver wants to step away to socialize, it can be challenging to find coverage to care for their loved one.

While lonely and even problematic, the severance that takes place supports the transformation that is characteristic of the second phase, the threshold phase. Whether it is welcomed or not, caregiving changes the caregiver. The role asks a lot of us, and the more we give, the more we grow and are changed.

In traditional rites of passage, the threshold phase always entails an experience of suffering or an ordeal. Whether we look at the Native American vision quest, tattooing in the Philippines, the walkabout in Australian Aboriginal culture, or lion hunting among the Masai, the ordeal takes the initiate to the edge of their strength and resources. We find, the greater the suffering that takes place, the more profound the transformation. Initiation rites have always marked one’s taking of a new place in the community.

Surviving the threshold phase means the return to one’s community or entrance into the incorporation phase. It is not possible to pass through the threshold phase of initiation without gaining some positive outcome, perspective, or gift. Such gifts are not for the initiate to keep. The learnings must be shared with one’s community for the sake of its survival. This is how tribal communities have evolved.

Through the challenging circumstances of caregiving, important lessons are learned. The hard-won lessons of caregiving should be shared with others who also will someday be called upon to care for a loved one. Sadly, many family caregivers find themselves thrust into the role with little or no preparation. A wise one who has been in the role can be an essential source of support and inspiration to new caregivers.

At Zen Caregiving Project, we believe in the importance of building strong emotional skills to manage stress and enhance well-being. We also recognize the usefulness of having strong caregiver role models. We know caregiving can be difficult and can even feel impossible at times; this is natural. The mindfulness-based practices we teach to caregivers do make a difference. However, nothing can take away all the difficulties caregivers will experience. Knowing that one’s challenge and sacrifice is an essential part of life helps us see that suffering can be a gateway to a new stage of life in which our experience and wisdom may be of benefit to others. Learning from those who have been in the role is how we will meet the growing demand for family caregiving in our society.

The pandemic stripped us of the ability to gather in-person to grieve a loved one’s passing. Kit Pappenheimer shares how she used used an online platform to recreate the ritual so important in remembering and celebrating a loved one’s life.

Mom died during this crazy isolating COVID time. Through the din of my grief, I heard from her community: friends and family sending their love and condolences, all yearning to come together to share who mom was to them. I needed to organize a memorial.

So much stuff came up in these first few days.

Here I pause to give a shout out to Zen Care Giving Project.  In my own years as a then Zen Hospice volunteer, I learned to be a family caregiver and sit with the discomfort and pain that accompanies the ending of a life. My mindfulness practice served me in being with all that was arriving …

But there was already so much to juggle, so much to manage, so much to figure out, so much to BE WITH.  Besides the mourning and full-on grieving flooding my brain and heart, there was the business of her death: working with a funeral director, handling death certificates and making decisions on what to do with her body, choosing containers for her remains.  And then the legal stuff: wills and trusts and estates, death certificates and lawyers and insurance and….

How was I to do all that and figure out a way to bring folks together to celebrate Mom’s life and passing? Climbing out of the black hole of my grief to handle the community mourning of mom’s death…it was challenging to say the least.

An unexpected bonus: the process of preparing this community event was cathartic for me. Each step provided an opportunity to be with my feelings, my grief, my love for my mother.

As it turns out, I had more support than I thought.   Having lost her own mother a month before I lost mine, my friend and colleague, Lynnea, had just gone through the same challenge.   With her own recent experience still fresh, Lynnea walked me through navigating mine.  The surprising and beautiful result was a satisfying and intimate memorial, held online in a virtual format.

Lynnea helped us organize the process. My sister Jill and I, along with family and friends, began by gathering, sorting and scanning photos. Reviewing years and years of visual memories; including pictures of mom as a child, a young adult before she married our father, and into her adulthood. Such a beautiful and emotional journey: a “ life review” of sorts. My dear friend made this into a slideshow set to mom’s favorite music.

No celebration of my mother would’ve been complete without Peter Paul and Mary songs sung loudly and with passion (and more than a few tears).  While Mom  was dying we played all sorts of music that I knew she loved. We incorporated much of that into her memorial. So healing. So special. So uniquely mom.

Next, I wasn’t really ready but I needed to write the obituary and the eulogy. Wow this turned out to be a very particular kind of writing – and I had lots to say. This too was part of the grieving process. As I moved through it, it ultimately helped me to zero in on readings and possible speakers for the memorial.

We began contacting friends and family to let them know the memorial was coming and how they could prepare and participate online. Of course, that in itself led to many heartfelt loving story telling phone calls and emails. I encouraged some to share these stories- many I had never heard-  at her upcoming memorial. 

Finally, the event itself. The logistics behind us (sending invites, setting up a zoom room large enough to host an online crowd, figuring out the tech logistics, and recording the event) we welcomed over 200 people from around the world. Many of mom’s contemporaries were thrilled to be able to come together in the community to remember and celebrate mom.  Oh, the stories! In their 80s and 90s, many would have been unable to travel, and so were delighted to have this opportunity to be together.  This was an unexpected advantage to doing her memorial online. 

From my black hole of grief, I felt deeply supported and incredibly grateful to be held in an intimate – albeit virtual -community. Weeks later, I returned to the recording to digest more of what had taken place. It is a gift that I will treasure forever.

Kit Pappenheimer is co – founder of Heartfelt Memorials, LLC . Kit is a former educator, teaching and running public schools and a long time hospice volunteer. She is an  ICF certified Executive Coach, employing heart-based, body-oriented and trauma-informed practices with a fierce belief in the resilience of the human spirit to face and honor the end of life with dignity and grace.

For more  information and support for your virtual memorial, contact Kit  at Kit@heartfeltmemorials.org

www.heartfeltmemorials.org