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 Naomi at firstname.lastname@example.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.
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. 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.
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. 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.
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.
National Academies of Sciences, Engineering, and Medicine. 2016. Families. Caring for an Aging America.
 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.
 See Families. Caring for an Aging America for a good overview of the positive and negative impacts associated with caregiving
 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.
 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.