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Drawing on years of experience as a hospice volunteer and chaplain, Alistair Shanks shares various practices that help us to be fully present to the experience of dying and how the use of both speech and touch can be beneficial at the end of life. This session ran on November 16, 2022.

Drawing from her own experience as a Sandwich Generation Caregiver, Mary Doane shares how the use of mindfulness, compassion, and clear boundaries can shift how you feel about your role, how you act within it and how you care for yourself in addition to others. This session ran on April 27, 2022.

Zen Caregiving Project is working with the non-profit organization Imerman Angels. Imerman Angels provides comfort and understanding to those experiencing cancer by matching them with a Mentor Angel, a cancer survivor or caregiver who has faced the same type of cancer.  ZCP delivered a four-part training to staff on self-compassion and ran a session on grief and loss for the wider Imerman Community on Grief Awareness Day. ZCP will be working with Imerman Angels on future resources around grief for Imerman Angels’ Mentors and Mentees. 

We spoke with Executive Director Stephanie Lieber and asked why a focus on grief was so important for her staff and community. 

ZCP: Why did you feel it was important to bring in training around grief for your staff and community?

Stephanie: The idea actually didn’t come from me, it emerged from our mentors. Our mentors were coming to us and sharing that they didn’t feel adequately equipped to support their mentees going through grief and loss. They wanted resources to give to their mentees to support them through a range of losses, including loss of confidence in the body, loss of a limb, or loss of a partner. They also often struggled to address the feelings of loss that were triggered for them when supporting their mentees. We needed to equip our community with tools and approaches to support them and to help them support each other.

Hearing this from our Mentors, our Staff team dug in and thought about their own feelings towards loss and grief, along with how we serve our community.  In our staff team alone, four staff members have lost loved ones to cancer in addition to others who have survived cancer themselves, or have relatives and friends that they have supported through cancer. It was as part of this focus on grief and loss we reached out to Zen Caregiving Project to work with us on this sensitive and incredibly important topic.

It’s a much bigger conversation than just us at Imerman Angels – people simply aren’t talking about loss and grief openly in society. They may be talking about it in small groups, but they aren’t standing up and saying “I’m grieving“, “I’m still grieving” or “Grieving is hard“. It’s just not a topic and discussion that is culturally and societally welcome. 

What is the biggest learning you took away from the Staff Training that ZCP delivered?

For me, the biggest takeaway was that our job is not to fix people’s grief. Grief is not something that is meant to be fixed – it’s meant to be experienced. As a support organization, our job is to sit with those who are grieving and be there with them, being with whatever they are feeling at that moment. Roy Remer, who led the training, shared that when supporting others through grief “it’s not what you say, it is how you show up”. You need to show up and just be present for someone, and drop your own agenda of wanting to change things or change how the other person is feeling. 

What did you find out about your community from the open session you ran with ZCP for your community on grief and loss?

It was clear from the high attendance and the session feedback we got that we need to be doing more sessions like this. We need to be providing opportunities for open and candid conversations and making these conversations accessible and frequent. 

In the session itself, I was surprised and touched by what I witnessed happening in the Zoom Chat. People started sharing about their losses via chat and others in the group responded, built each other up, and said “that sucks, I’m here and I’m listening, your feelings are normal, it takes time to heal”. Right there on the chat was a community of grievers that showed up and listened. That’s what our community is. 

On a personal note, my dad died in February of this year and in the two months after his death I would call and apologize to friends who had previously lost a parent as I realized I hadn’t showed up in the way that they needed and would have been most helpful to them. Yes, I drove hours to attend funerals and delivered food, and checked in on them to see they were OK, but I wasn’t just there for them to just be as they were. I didn’t spend time just acknowledging how they felt and being a supportive witness to that.  That’s what the people in the chat function did at the session – they showed up. 

What elements of ZCP’s approach to loss and grief did you appreciate the most?

I really appreciated Roy’s unique approach to loss and grief. The way that he carefully and thoughtfully wove mindfulness into his explanations and how the approach is geared towards offering people useful tools to use, rather than trying to help or solve their grief.  

And along with this idea of “showing up” I also appreciated the emphasis on compassion, and that compassion involves feelings and action. But also learning that an action doesn’t have to be big and loud, sometimes an action is as simple as being present and not saying something. 

What are the next steps for Imerman Angels to integrate grief awareness and training into your program?

We never thought of this as a self-contained project. All of what we have learned, and the ideas that have sprung from it, has to be integrated into everything we are doing. We have, for example, run journaling sessions, or yoga classes in the past but in the feedback from the Grief and Loss Session people were suggesting that we run a Grief and Yoga class, or Grief and Journaling class. And of course, that makes sense because essentially everything we do is about loss – not about death – but a huge part of living with and managing cancer is about experiencing loss. 

There is no end to this conversation, it has to be an ongoing dialogue with our community to support them and help them open up the conversation to others, even outside of the Imerman Angels community. Because grief is not specific to a particular audience – we all experience loss on a daily basis and are all going to experience grief at some stage in our lives.

For more information on this project or our custom training course and sessions, please contact Sarah at sarah@zencaregiving.org.

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.

Thirty years is a long time to be in a relationship with anyone, let alone with an organization that you volunteer for. Loretta Lowrey arrived at Zen Caregiver Project (then known as Zen Hospice Project) as a volunteer in 1992, and while she stepped away during a few child-raising years and then again during her busy career years, Loretta has always found herself being called back to the organization in one way or another.

She came to Zen Caregiving Project (ZCP) in the middle of the AIDS epidemic when even the word ‘hospice’ was new to her.  

“Suddenly, everyone in my world was talking about it—the woman who took care of my daughter, my sister, a museum curator that I worked with,” Loretta said. “When something presents itself  to me three or more times, I pay attention to it.”

Paying attention is exactly what she did by volunteering at Laguna Honda Hospital as a Zen Caregiving Project caregiver. She continued in that role for five years until her second child turned two years old; she then stepped away to spend more time with her children. Because of her background in nonprofit management and development, Loretta continued to stay active with the organization by occasionally helping with events and development support. Over those years of being a full-time mom and employee, Loretta lost touch with ZCP for a while.

In 2013 when Loretta was looking forward to retirement, she decided it was time to return.

It felt like coming home,” she said. “When I returned to Laguna Honda Hospital (LHH) as a volunteer, it felt so familiar and lovely to be a part of that again. We all live in these self-created bubbles and the greatest impact for me has been meeting the range of people who have invited me into their lives and into their hearts.”

Observing the frailty and resilience of the residents is what continues to open Loretta up to becoming more compassionate and open-hearted.  

“It’s given me perspective on what is truly important. Volunteering at the hospital and being with residents is so real. So many other things that seemed important before dropping away. It motivates me to live more fully by being exposed to illness and death and having it normalized,” Loretta said. 

One of the residents who made an impact on Loretta was a woman who used a device to speak. The only way that she could communicate was by typing out words and since it was difficult to use her hands, it took a long time for her to have “a conversation.” 

“I was so taken aback that it was such an effort to communicate, yet she would say things like ‘That’s such a pretty dress.’ We laughed and cried together while completing a legacy project that was important to her.”

During the pandemic, Loretta became a Mindful Caregiving Education (MCE) instructor for ZCP. She now teaches some of the MCE courses and still sits with residents at LHH. Through the years and through her various roles with ZCP, Loretta has become more aware of herself. 

“One thing I am able to notice is when I’m acting out a role or when I have my armor on. The training we’ve had to sit at the bedside with someone has made me more aware of the power of presence,” Loretta said. 

“I really think of this work as part of my practice. I think of service as seeing the wholeness in others. I thought I’d be coming to this work to give something, but in fact, I take away so much more than I give.

“Many of these residents are living fully in spite of their illness or condition,” Loretta said. “They are such a gift to me.”

And Loretta, like all our volunteers, is a gift to us at Zen Caregiving Project.

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.

Bob Stumpf is prepared to go the distance whether it’s in a relationship with others or on a run. He’s completed 28 marathons and these days, Bob often comes in first or second in his age group. (Don’t tell anyone that at 74 years of age, Bob generally competes against only one or two others in his age category). 

As a volunteer with Zen Caregiving Project (ZCP) for nearly six years, Bob sits with residents at Laguna Honda Hospital every Friday afternoon. One particular resident continues to enrich Bob’s life even though this person has since died. 

“There was a resident at Laguna Honda that I visited weekly,” Bob explained. “I would save him for last because I knew it would be an uplifting experience for me at the end of my day.”

Bob explained that he loves sports and thought he knew everything there was to know until he met S, that is. “S. knew everything there was to know about sports, everything. He and I also bet on sporting events, usually hundreds of thousands of dollars at a time, with play money. I think he still owes me some money,” Bob said with a grin.

“Sports were a common bond from the beginning, and S. had also visited my hometown in  Southern Indiana, so he understood where I came from,” Bob said. “It wasn’t just me taking care of him; it was S. taking care of me.”

That’s one aspect that surprised Bob about being a volunteer – how much he would get back from it. 

“Not only have I gotten close to the residents I sit with, but I’ve developed close, personal relationships with other volunteers. During our shift change meetings, I find myself getting to know other volunteers who are very different from me, and yet we are kindred spirits,” Bob said.

“I didn’t expect that whatever calls people to do this work would give me the opportunity to meet so many other like-minded folks. We’re a real community.” 

As a left-brained attorney for more than 40 years, Bob surprised himself by recognizing that he can also be a right-brained kind of person. When he turned 65 years old, he wanted to scale back his work and increase his volunteerism. While he had been on a number of charitable boards over the years, he found himself drawn toward volunteer work that would give him a one-to-one connection. 

“I’ve always been interested in the concept of death; not in any kind of morbid way, but in the sense that we are born, we live, and then we die.”

Bob is also interested in music; specifically, he has a penchant for collecting jukeboxes. He once had 22 jukeboxes in his office that are now at home with so many others that he doesn’t divulge the total number. There’s one behind him as we talk, lit up and ready for any song to be played.

“They all work,” he explained. After he purchases them, he sends them to someone who restores and fixes them for him and then delivers them wrapped up in such a way that Bob feels like it’s Christmas morning every time one arrives.

He feels that same joy when he leaves his shift at Laguna Honda.

“I get so much more out of volunteering than I put into it,” Bob said. “When 6 p.m rolls around on Friday, I’m always at my happiest as I’ve been all week. During my shift, I’m able to get out of my own head. It’s a cleansing and nourishing experience.”

“I’m more sensitive now to the importance of having relationships with people who are really not like me at all,” Bob said.

One such resident that Bob has met could not be more different. Bob has had many advantages as a white man who attended Harvard, whereas E. had a very different life as a black man in America who for many years lived on the streets. Bob and E. have met weekly since December 2016, and they have forged a strong relationship.

“He’s important to me,” Bob explained. “ We aren’t family; we aren’t best friends, but we get together weekly, and he’s my friend. When I leave, he usually says, ‘Be safe out there.”

Bob looks off into the distance and returns to thoughts of his friend, S. who died last year.  

“I saw him for almost two years,” he said, “and every time I walk by his room at Laguna Honda Hospital, I think of S. I miss him.”

Bob hasn’t just run 28 marathons. He’s running a marathon with residents at Laguna Honda, and rest assured, he’ll go the distance with them not to win any kind of medal, but to just be present on their journey. “People can have almost nothing left, and they are still living their lives,” Bob said. Yet they still have Bob, holding their hand and offering his presence. And often, at no extra charge, he offers them a few jokes.

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.

In December our Executive Director, Roy Remer, presented a webinar for the Family Caregiver Alliance called The Gift of Self-Compassion This Holiday Season. We have posted it below for anyone to access.  

In the webinar, Roy talks about why we must include ourselves in the kindness and compassion we give others. In the interactive session, he shares practical ways to build compassion towards ourselves and those around us.

Community Forward SF is a non-profit that works with and supports the most vulnerable and underserved communities in San Francisco: adults and older adults, who are or have been chronically homeless, those who are dually or triply diagnosed, those with chronic medical conditions, substance abuse issues and mental health needs and those who are BIPOC, LGBTIQQ. Community Forward SF offers medical, emergency, and transitional shelter, supportive housing, and a large array of wrap-around services such as mental health services, case management, substance abuse treatment, and domestic violence support to meet clients where they are at when they access the service.

The nature of the work they do results in front-line and clinical staff at Community Forward SF witnessing loss, suffering, and distress on a daily basis which can lead to emotional strain, empathy fatigue, or overwhelm. This strain on the staff has only increased since the pandemic. 

In response, Community Forward SF is partnering with ZCP who will deliver four monthly sessions to Community Forward SF’s clinical staff. These sessions will cover the role of mindfulness in exploring and regulating emotions, compassion for yourself and others in a caregiving role, the role of loss in caregiving, and how to approach maintaining healthy boundaries. 

Suzanne Adams, PhD, the Vice President of Clinical Services at Community Forward SF explained why she approached ZCP to support her staff: 

“Mindfulness is an integral part of a cultural shift I hope to impart on not only for our clients’ wellbeing but for our clinical team, as well. Our clinical staff manage the demands of difficult jobs–feelings of activation, coping with vicarious trauma, and issues of burnout–while also being called to address the essential need of self-care. I reached out to Zen Caregiving to provide the education, resources, and emotional support to my team that can help them in all areas of their experience.”

Sessions will begin in January 2022 and will run until April 2022. 

If you are interested in how ZCP can support you and your team, please contact sarah@zencaregiving.org to learn more.

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.

In April this year we ran the first wave of our Family Caregiver Study in partnership with academics at the University of California, Davis, which you can read about in our previous blog. We had a total of 140 people join that first wave, with 116 people completing the sessions and the main surveys they were sent*. Individuals joined from all across the country and even internationally. 

We were encouraged by the number of caregivers that signed up and participated in this first wave, and it showed us that there was a clear desire from caregivers to attend our Mindful Family Caregiving course. We approached the Stupski Foundation, who had supported our first wave of the study, and they generously agreed to fund a second wave. 

For this second wave, we changed the timing of the sessions to make it easier for caregivers on the East Coast and those outside of the USA to join. We capped our registration at 76 people and the course ran across September. As with the previous wave of our study, we asked participants to fill in four surveys, one a month before the course started, one just before the course started, one immediately after the course finished and we will ask them to fill in a final survey a month after they have finished the course. 

Having this second wave of participants will provide us with more data for our analysis, will help us get greater statistical power in our analysis and will help us identify more subtle changes in the data.

Next steps

We will be compiling the data from Wave 1 and Wave 2 and examining the impact that the course had on caregivers’ emotional, psychological and physical health, their level of caregiver burden, and their wellbeing. We hope to have the results published in an academic journal in early 2022 and will then work to share our findings with our community and other caregiving organizations, as well as everyone who participated in the study. We will also be examining the feedback that caregivers provide on the format and content of our course, and using this to improve our course design. 

* We had expected a greater drop-out from participants, recognizing the difficult and often rapidly changing schedules of many caregivers.

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. Anyone interested in working with ZCP on further research studies, please contact Sarah@zencaregiving.org