emotional support for caregivers

Kristi Jacobson knew what she wanted, she just hadn’t found it yet. As caregiver to her 88 year old father, with whom she has lived since 2011, Kristi knew she was in a unique role that has evolved over the years. “There’s a dance between how to be supportive without being annoying or taking away his power.” That dance flowed pretty naturally until two events in close succession dramatically changed the dynamic. First, her father became the victim of an online scam. It resulted in a big financial loss but most significantly, it was something she knew could have been avoided had she known about it. 

“He gave away a lot of money and it made it really clear that had he called me I would have put that to rest within a minute so there was a lot of conversations about (how) we’re a team, we’re a family team and it’s a normal progression for me to start doing some things for him like he’s done for me, and this is more my generation of things – I understand technology a bit better – so about a year and a half ago the real, vigilant care began.”

Still in shock from that experience, the father-daughter team took another blow when just two weeks later her dad got COVID. “He quickly declined,” Kristi described, “his confidence but more significantly his spirit, his sense of “I’m a man in charge of my own life.” 

As it is for so many family caregivers, during all this time of caring for her dad through physical, psychological and emotional difficulties, Kristi was also working full time. She felt competent, but also felt clear she needed and wanted support. And also like many other caregivers, Kristi wasn’t used to asking for help. 

“I always take care of stuff … so I didn’t know how to ask for help but I know I want guidance and support and I knew I wanted a group and I wanted a path.”

In January 2024, she finally was able to enroll in a Mindful Caregiving Education course. It gave her much of what she sought, but not everything. 

“And then I took the course finally. It was what I wanted really really bad and so I was so thankful to get to the group. I found helpful reminders of, you know, taking care of oneself and kind of working with mindfulness while being a caretaker but I still felt a hunger for something more.”

That something more turned out to be the Caregiver Support Circles, a pilot program ready to fully launch in October 2024. Open to all caregivers who have taken our courses, Support Circles are informal gatherings for respite, connection, and discussion. The sessions are lightly facilitated, integrating language and skills presented in the courses. For Kristi, it was the missing piece she’d been seeking. “I was so relieved when the group (support circle) was formed. Those two together – the course and the support circle – were really (raises two thumbs up).”

As Zen Caregiving Project builds capacity to reach more caregivers, we’re thankful for participants like Kristi who take advantage of the benefit of a skill building experience like a Mindful Caregiving Education course, combined with the nourishing reinforcement of Caregiver Support Circles.

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.

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.