Top tips from running our first CAREgiver course

We have been working with Zuckerberg San Francisco General Hospital (ZSFG) since September 2019; researching, designing, and implementing a Train-the-Trainer program. In this first phase of the project, we trained four staff members, providing them with materials such as lesson plans, videos and handouts, to support them in delivering six mindfulness-based sessions to family caregivers in English. We have named this six-session course CAREgivers.  In June, after much careful planning and thought, we ran our first CAREgivers course with family caregivers.

The population at ZSFG is more diverse than neighboring hospitals, has higher rates of people who speak English as a second Language, and has a greater number of patients on Medi-Cal and Medi-Care. Part of our project involved understanding the needs of this population and designing our course to be as accessible and attractive as possible to them. In this blog we share five key takeaways for designing for this audience.

1. Not everyone has Zoom!

At Zen Caregiving Project (ZCP) we have been running all of our programs online since the pandemic, asking participants to join via video call to create a sense of online community. At ZSFG, however,  some family caregivers can’t use video calls as they don’t have access to a smartphone or laptop, have limited data for video calls, and/or aren’t comfortable using online technology and software like Zoom. 

We have designed the CAREgivers course so that participants can call in via cell, landline, or video call, making it possible for anyone to participate in all activities regardless of how they are calling in. Not all family caregivers use email, so we also have simplified registration to a process that doesn’t require an email address. Additionally, as online polls can’t accommodate call-in participants, we don’t rely on zoom polls to collect data.

2. Don’t ask for too many personal details at registration

Some patients and family caregivers at ZSFG may have uncertainty around their immigration status, or may be undocumented, causing anxiety about sharing this type of personal information with institutions. To address and hopefully reduce any such concern, we have limited the amount of identifying information we ask for at registration and in the course and in marketing materials we emphasize that the courses are a safe space.

3. Recruitment takes time, and lots of effort!

Recruitment was particularly challenging this year. Online advertising of our course via email and social media outreach was limited as some of the caregivers we were trying to reach simply didn’t have email or use social media. Physical flyers and posters in clinic waiting rooms were not as effective as usual as COVID-19 meant many patients either didn’t attend sessions in person, or attended on their own without a family caregiver.

 In the end, we had the most luck by building networks within the hospital: clinicians were asked to refer anyone they thought may benefit from the course, and we built awareness of the program through social workers and the long-standing Cancer Awareness Resource and Education program (C.A.R.E). But the key to effective referrals was the hard work of a ZSFG team member who reached out to the referred caregivers, introducing the sessions to them, answering any questions they had, and reminding them when the next session was. This personal connection with each individual caregiver was very important in building the trust of attendees.

Initial sign-up numbers were small but we know that building word of mouth takes time and are confident that this number will grow as awareness of, and trust in, the program increases.

4. Keep language simple

Many of the patients and caregivers at ZSFG speak English as a second or third language. While we will be designing courses in both Spanish and Chinese, we wanted the course in English to be as accessible as possible. We also recognized that some caregivers may read at levels lower than those of the general population. In response, we reviewed all of our materials with an aim to adjust the existing  language so that it met an 8th Grade reading level. Instead of talking about boundary encroachment, for example, we talked about crossing someone’s boundaries. Instead of using “melancholy” we used sadness, and instead of talking about cultivating self-compassion we talked about growing or building self-compassion.

5. Mindfulness can support everyone, but don’t assume everyone knows what it is.

For some of us, Mindfulness can feel mainstream. It is mentioned in mainstream media, there are hundreds of apps and programs related to Mindfulness and it is being used in everything from professional sports to kindergarten classes.

It is not, however, so mainstream that everyone knows what it is. In our research with family caregivers at ZSFG there were many who had not heard of the concept, although were interested when it was explained to them. 

In designing our course we started with the assumption that our audience didn’t know what Mindfulness is. We worked hard to simplify our explanations, adding an additional session to give time to explain and discuss the approach. We also removed any explicitly Buddhist language like “Sangha” or “Dharma”, and grounded our explanations in real world examples to show how Mindfulness could be practically used in daily life.

Next steps

We will be running our second CAREgivers course later this year, and courses will continue throughout 2022. We also hope to transition to in-person sessions, as the city begins to open up after the pandemic lockdown. To read more about the program please see our previous blog on the start of the project, and the experiences of the Mindful Caregiving Trainees on the project.

Coping with loss, sharing our approach with Curry Senior Center staff

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.

Five approaches for caregivers to work with loss and grief

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.