caregivers

Table of Content

• Caregiving Organizations
• Specialized Support
• Planning Guides & Tools

Caregiving Organizations

AgingCare

A website to support families. The site has an active online forum where caregivers can share their experience and learn from others by asking questions, giving answers, or participating in a group discussion.

Caregiver Action Network

CAN (the National Family Caregivers Association) provides articles, videos, and peer support to family caregivers across the country free of charge. They cover a broad range of topics from practicalities such as medication and nutrition management, to caregiver self-care to navigation of the medical system.

Family Caregiver Alliance

This non-profit’s mission is to improve the quality of life for caregivers and the people who receive their care. Their website has an online learning center and links to many other resources such as in-person support groups.

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Specialized Support

Alzheimer’s Association

For those caring for loved ones with Alzheimer’s, this website has clear and easy to access information on practical and emotional elements of caregiving.

American Cancer Society

The caregiver page of the website has an interactive caregiver resource guide, articles, and videos on cancer-related caregiver topics, online communities, and links to other support groups. 

Companioa from the Institute on Aging

A paid-for service, to support caregivers of loved ones with dementia. This service pairs you with a personal “Care Coach”, a trained dementia expert. The Care Coach helps assess your loved one’s needs, map out a care plan and meet with you bi-monthly to discuss the plan and your needs.

George Mark Children’s House

Life-affirming care and comfort for children with illnesses and their families.

Imerman Angels

Imerman Angels support cancer fighters, survivors, previvors and caregivers by matching them with a “Mentor Angel” – a cancer survivor or caregiver who has faced the same type of cancer and who can answer questions and provide one-to-one support.

Lorenzo’s House

Lorenzo’s House focuses on younger-onset dementia and revolutionize care in an industry where existing practices need profound reimagining.

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Planning Guides & Tools

A List to Reduce Work for Your Next-Of-Kin

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.

AARP Local Caregiver Resource Guides

AARP has put together local resource guides showing what support is available for family caregivers in different states and different cities.

How Do I Start My Advance Care Planning

A list of links to guides and toolkits for creating your Advance Care Directives.

Next Step In Care

Next Step In Care provides written guides and videos for family caregivers that help them through any medical treatment – from visiting the family doctor, trips to ER, hospitalization and discharge and Homecare.

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.

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

As demand for our open courses increases, along with new partnerships requiring custom courses, we need more teaching time from our instructors. Across this year we have piloted an internal training program in which we provided additional training to three existing ZCP facilitators to qualify them to teach our Mindful Caregiving Education (MCE). 

The training consisted of 20 hours teaching with Executive Director, Roy Remer, and Senior Instructor, Mary Doane, covering our key modules, best practices for teaching MCE, and also a session dedicated to teaching online through Zoom. This training will be followed by the instructors co-teaching MCE courses with Roy or Mary.

Two of the instructors have shared what they learned from the training.

Loretta is a volunteer caregiver for people in hospice and palliative care. She has been facilitating New Volunteer Training with ZCP since 2017.

What, for you, was the most surprising thing you learned from this training? 

I was surprised to learn in the MCE training that I can set aside all expectations of delivering the perfect presentation and focus instead on being fully present to offer practices to caregivers. While there is much content to cover, I saw how effectively it was absorbed when there was plenty of space around the ideas. And by letting go of all sense of “performance,” my complete attention shifts to our participants. I look forward to practicing presence in the context of teaching

How do you feel it will support you in your professional teaching?

I know how powerful presence can be in caregiving, at the bedside with family members, and in hospice and palliative care settings. Presence is wholehearted and caring attention. It invites connection through deep listening – listening inward to mind, body, and heart; listening to others; listening with openness. With presence, we are better able to see what is true, and be with whatever shows up in the room, no matter how difficult. I feel certain that trusting and focusing on presence will support my teaching in the same ways it supports caregiving.

Was there anything you learned that you feel will be supportive personally?

Sometimes learning can mean remembering what we already know. The reminder to lead with an open heart will support me in life as well as teaching. The warmth and open-heartedness of the teachers and participants in the training helped me remember how healing this can be. I saw in them how leading with an open heart can be expressed through kindness, acceptance, vulnerability, and authenticity. Trusting presence and leading with an open heart are important lessons that will serve me, and allow me to serve others well.

Teresa is a journalist and zen practitioner. Born in Latin America, she grew up in Spain, and became a US citizen after two decades living and working in the US. She currently lives in Spain and takes care of her mother who suffers from Alzheimer’s.

Teresa partnered with ZCP to develop and teach our MCE for Spanish-speaking caregivers, which will be run in early 2022.

What, for you, was the most surprising thing you learned from this training? 

As part of the training, we did an exercise around Loss, which was very powerful. It made me realize how difficult it is to let go of things we care about, let go of our abilities, people in our lives, and our self-identities. Thinking that the people we care for or have cared for in the past already lost many of the things we struggle to let go of made me feel very compassionate towards them. The importance of setting boundaries and not feeling guilty about it was also a great learning.

How do you feel it will support you in your professional teaching?

The intense training, the teachings of Roy and Mary, the exchanges with the other instructors, and the opportunity to teach some of the modules prepared us for the next step of becoming instructors ourselves. I am very grateful.

Was there anything you learned that you feel will be supportive personally?

For me, I learned the importance of self-compassion and setting boundaries.

We at ZCP are grateful for the time and dedication our instructors have shown, and for their passion to support those caregiving for others. If you are interested in training with us, please keep an eye on the website for announcements of upcoming training opportunities.

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.

This year we began a two-year project in partnership with the Palliative Care Team at the Palo Alto Medical Foundation (PAMF), which is part of the Sutter Health Network. The aim of the project is to introduce support sessions for family caregivers within Sutter Health. 

The project began with Zen Caregiving Project (ZCP) delivering four sessions to the Palliative Care Team in Palo Alto and San Mateo. These sessions covered self-care, managing difficult emotions, loss, and maintaining healthy boundaries. The sessions were a way of introducing ZCP’s teaching approach and content to staff, helping them to recommend the sessions to family caregivers in the future, and hopefully also provided support to the staff in their emotionally demanding work. 

The next stage of the project will be running our CAREgivers program for family caregivers in Sutter Health. The CAREgivers course consists of six one-hour sessions, run weekly. The sessions are drop-in providing flexibility for the caregivers with their often unpredictable schedules. Each session includes some teaching on a topic, a short guided meditation, activities, and an opportunity for sharing with other caregivers in the group. 

We are working with social workers from two Sutter Health locations to recruit for our first pilot course in October and are planning to run another three to four courses in 2022. We hope that these first courses, taught by ZCP instructors, will build awareness and demand for the CAREgivers program among the family caregiver population. Following completion of the ZCP-led sessions, we hope to train Sutter Health staff members in the delivery of the program as part of our established Train-the-Trainer program. In this way, we would ensure the sustainability of the program and continued support for family caregivers. 

For more information on this project, CAREgivers, or our Train-the-Trainer program, please contact us at education@zencaregiving.org.

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.

In this session for professional caregivers, Roy Remer provides the opportunity to reflect on ways we cope with change and how mindfulness and compassion practices can be used to navigate change and reduce the anxiety that it can bring. This session was run on May 28, 2020.

The holidays can be a joyous but stressful time (but it doesn’t have to be stressful). We offer 10 tips for caregivers to take care of themselves over the holidays.

1. Practice self-love

While the holidays can be stressful, it’s essential to take care of your physical and mental health. Keeping yourself healthy produces positive outcomes and improves the quality of care for those who depend on you.

2. Keep it simple

Remember, you have only so much energy and so many resources, don’t expend them at the expense of your own health. Keeping things simple and stress-free will save energy and your mental health.

3. No-stress meals

It’s ok to go out for meals or order in. The point is to enjoy the time together with those you love. If the time spent preparing a meal is more stressful than it’s worth, skip it.

4. Start a new tradition

Sometimes getting out and about isn’t possible due to personal responsibilities and time constraints. Invite people over to decorate, watch holiday movies at home, make yourself your favorite treat. You can develop new traditions that fit your life.

5. You can ask for help

Ask your friends and family to help with cleaning or groceries, shoveling the walk, tidying up. If resources allow, you can also order the things you need online or hire someone to help you.

6. Shop online

With so much going on, it’s challenging to find time to shop for gifts. Don’t be afraid to shop online for gifts and groceries, it’s a great time saver and keeps things relatively stress-free.

7. Brush off negativity

It’s the time for connecting with loved ones but also a time to keep our differences in check. Negative comments may come and go but don’t own them, brush them aside. Enjoy the time with those you love.

8. Let go of perfection

Don’t let perfect be the enemy of the good. You have limited resources and limited bandwidth, work with what you have but leave perfection behind. The point is to enjoy the season.

9. Connect with caregivers

If you haven’t already, connect with caregivers in your community or find online communities to share your thoughts and gather tips. This is a great time to lean on these communities as you process the holidays.

10. Go with the flow

Take things as they come, there’s little need to stress about things that are beyond your control. You’ll feel much better physically and emotionally, but let go of the little things and allow yourself to enjoy the company of those you love.

Caregiving has got a bad rap

A lot of what we read about caregiving paints a very negative picture. Caregivers stressed by their caregiving responsibilities are at higher risk of experiencing fatigue, depression, and social isolation than non-caregivers, and some studies found that caregivers had decreased life expectancy compared to their non-caregiving equivalents.[1]

An interesting review of the research in the field from a professor at John Hopkins University points out that it isn’t caregiving per se that leads to these negative impacts, it is the stress response that caregiving can produce. In the case of research into life expectancy, those caregivers who were not over-strained had the same life expectancy as non-caregivers and, what’s more, in a few studies, caregivers had a longer life expectancy.[2] This leads to the conclusion that if we can find ways of helping caregivers reduce the stress they experience, we can protect them from the negative impacts of caregiving. Maybe we can even help them benefit from the positive effects of caregiving, such as a sense of purpose, increased confidence, and a deep connection.[3]

How can we reduce the stress of caregiving?

Stress occurs when a situation exceeds the resources that the caregiver feels they have to deal with it – we can all relate to that feeling of overwhelm and anxiety when we feel we are not able to manage the situation in front of us. 

We can, therefore, reduce stress in two ways. The first is by changing the situation the caregiver is in so that it doesn’t exceed their resources to cope with it. Family caregivers can face a lot of situations that could contribute to a feeling of overwhelm, e.g., carrying out medical tasks with little training, the physical and emotional fatigue of many hours caregiving, adjusting to the loss of a relationship, loss of time for yourself and increased financial strain to name a few.[4] In response to this, there is a large number of caregiving programs that try in various ways to improve these external circumstances and support the reduce their external stressors by providing practical, logistical, and financial support to caregivers.

The second way to reduce stress is by building up the emotional resources of the caregivers. This helps them to feel more able to meet skillfully and cope with situations as and when they arise (life has a habit of presenting us with “interesting” events and situations when we least expect it!). This emotional resilience approach is the approach that Zen Caregiving Project takes in its Mindful Caregiving Education. In our courses, caregivers are taught mindfulness-based tools and strategies to help acknowledge, understand, and skillfully respond to challenges that arise in their caregiving. By teaching these skills, we are increasing the caregiver’s emotional resource or capacity, meaning they feel able to cope better with more situations whenever they happen and reduces the likelihood of them becoming overwhelmed and stressed. 

It’s not an either/or

Here at Zen Caregiving Project, we champion all efforts to support the vital and powerful work that caregivers do, and we realize that a combination of both approaches described above is optimal. We are, however, sometimes surprised that emotional resilience-building is seen as “nice to have” rather than the essential skill we feel it is. Caregiving courses often focus on practical skills related to ADLs, or activities of daily living, like how to bathe or lift someone, or how to navigate the complex health systems. Yet, skills to support emotional resilience are conspicuously absent. Typically, suggestions for self-care when presented focus more on discrete activities such as doing regular exercise and having long baths. Both are great, but it’s best to address the problem of stress once it’s arrived rather than building a set of skills that strengthen emotional resilience and minimize the stress in the first place.

Skills that build emotional resilience aren’t magic cures. Still, we would argue they are equally as important as the more practical skills, both for the caregivers’ wellbeing and the quality of the care they provide to their loved ones.[5]

Work with us to build emotional resilience in those who need it

Here at Zen Caregiving Project, we offer our courses directly to caregivers and also work with partners in a range of sectors to build in emotional resilience into any caregiving support they provide. We hope to continue to raise awareness around and meet this vital need and welcome conversation and collaboration with the network of amazing organizations that work tirelessly to support caregivers. 

[1]National Academies of Sciences, Engineering, and Medicine. 2016. Families. Caring for an Aging America.

[2] The authors hypothesized that the positives of caregiving such as having a feeling of purpose in your life, and a connection with the person you are caring for, could explain the longer life.

[3] See Families. Caring for an Aging America for a good overview of the positive and negative impacts associated with caregiving

[4] It is no surprise that in the research caregivers with greater external challenges (such as caring for a loved one with greater needs, greater time spent caring and caring for people while on a low income) all experience higher stress than those with less external challenges.

[5] A study by Ankuda et al (2017) found that those individuals whose caregivers had poor wellbeing were more likely to be admitted to the Emergency Department and have higher Medicare Expenditures.