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It is with great sadness that we share the news of the death of our teacher, friend, and colleague, Irene Smith. Irene died at home on April 4th, supported by a wide network of devoted friends and volunteers. Her wish was to remain in her Cole Valley apartment of 42 years until the end, and we accomplished that goal.

Irene participated in the first-ever Zen Hospice Project volunteer caregiver training over thirty years ago and joined us for nearly every one since. She generously shared her Touch Awareness practices later with family and professional caregivers as a Guest Instructor in our Mindful Caregiving Education courses. Irene reached a level of extraordinary renown worldwide for her work under the banner of her educational organization, Everflowing. 

We will dearly miss Irene’s care, brilliance, gentle gaze, and good humor. You can find out more about memorial services by visiting her Caringbridge page. 

Thank you for your service, dear Irene. May you rest in eternal peace

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.

In this session, Mary Doane shares short, practical self-compassion exercises that healthcare workers can integrate into each day. This session ran on February 10th, 2021.

In this session, Roy Remer shares short, easy mindfulness practices to help healthcare workers reset and renew in the midst of these unprecedented times. This session ran on January 20th, 2021.

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

This useful list and accompanying templates were kindly shared with us by Donna Woodward, a Hospice Volunteer and Dementia-care Volunteer. They will be particularly useful for friends or family in a caring role.

No matter how simple your life is, there is probably more to be taken care of when you’re gone than you realize.  By thinking through and carrying out the tasks below, you will be saving your family and friends administrative hassle after you have gone. 

Family members and friends that survive you need to know where your personal papers are, what assets and debts you have, where important documents are located and relevant information such as account numbers, passwords, and a variety of other things.  Ideally you will have a will directing how you want your assets to be distributed, which you update as circumstances change.  

By completing the checklist below you can help those who survive you to complete all necessary paperwork as quickly as possible. There are templates at the end of the blog that you can use to note down some of the information. It’s also worth noting that if you reduce work for your Executor or attorney, you might reduce costs to your estate too. 

Keep the information from the questions below in a document. Keep that document in a very secure place and only give access to a trusted person, as it contains account numbers and passwords. 

Check list

1. If you have a will, make sure relevant persons know where it is kept and who can access it.  It should not be kept in a Safety Deposit box unless someone else has the code or key to access it.
   
   
2. Ensure that relevant persons know who your Executor or attorney is so he/she can be contacted as soon as possible in the event of your death. Put the Executor’s name and phone number in some prominent places: refrigerator door, back of bedroom door, glove compartment of your car (along with a copy of your Living Will in case of a medical emergency while you’re alive.)
   
   Make sure you also let your physician, funeral director, and attorney know who your Executor is so that the Executor can be notified of your death as soon as it happens.
   
   
3. Create and share a list of friends and others who should be informed of your death.
   
   
4. Share any final arrangements that have been made or that you would like (burial or cremation, cemetery name and location, memorial or religious service, music, or readings you’d like).
   
   
5. Provide a list of all your assets (e.g., deeds, stock certificates, bonds, bank accounts), where to find them, and all the corresponding paperwork showing proof of ownership.
   
   
6. Provide a list of all your liabilities and debts and the corresponding details.
   
   
7. Create a list of banks and other financial institutions that need to be informed of your death, plus account numbers and bank locations.
   
   
8. Create a list of your credit cards that will need canceling, including the card numbers, name, and phone number of the issuing institution.
   
   
9. Make a list of the automatic payments being paid by a bank or credit card and the contact details and passwords for the organizations you are paying, e.g., your mortgage, household utilities, homeowners’ insurance. These will need to be canceled/updated.
   
   
10. Create a list of the subscriptions and accounts that need to be canceled, including the subscription name, your account number, and the username and password. Subscriptions could include: newspapers, pharmacy refills, other online subscriptions, and accounts include email and social media like Facebook and Twitter. 
    
    
11. Provide a list of benefits that need to be stopped at the time of your death: e.g., SSA, VA, pensions.  You will need the contact information and account numbers for these.
    
    
12. Provide all your tax records.
    
    
13. Create a folder with all your documents related to any safety deposit boxes, post office boxes, storage units, including their locations, where the keys are kept and any passwords or codes.
    
    
14. If you have a car, then note down your car registration and insurance details, as well as a copy of your drivers’ license.  If your vehicle is to be used before the administration of assets is complete, the title may need to be changed.
    
    
15. Write down who has your house or other keys in circulation and if any locks need to be changed.
    

Note on finances: You may need an estate attorney, but the county Probate Court Clerk can be very helpful. If your finances are simple and there are no conflicts among survivors, your legal needs may be minimal. 

Below are templates you can download and print for your use.

Actions for those surviving you

• Inform anyone with Durable Power of Attorney. Durable Power of Attorney (PoA) ends at your death.  After your death, the PoA no longer has the authority to exercise any control over your assets.  He/she may not access your safety deposit box.  The Executor or Administrator of your will get the authority needed from your county probate court.

• Collect Death Certificates.  The funeral director will provide these to the next of kin or executor.

Note: To prevent identity theft which might later impact the finances of survivors, it is recommended that copies of the death certificate be sent to the credit reporting agencies.