I have had the privilege of meeting many caregivers in my role of teaching Mindful Caregiver Education courses at Zen Caregiving Project. An issue that comes up, again and again, is the challenge they face of maintaining healthy boundaries. Boundary violations — when someone oversteps the limits of another’s comfort zone — are common in the caregiving experience because they are common in life. Interacting with others regularly means that we will bump up against emotional boundaries. There is really no way around it.
Some examples of boundary violations are:
A daughter caring for her father feels a boundary was crossed when he asks her to clean his house, so he does not have to pay a housekeeper.
A brother feels a boundary is crossed when his caregiving sister won’t let him speak for himself during an appointment.
A nurse feels a patient has crossed a boundary when the patient asks for a personal phone number to call after hours.
In our Mindful Caregiver Education courses, we help people recognize when their boundaries have been crossed and teach them skillful ways of responding to boundary violations. We are not teaching how to eliminate boundary issues. In fact, this really is not possible. However, caregivers can learn to respond skillfully, so their response does not worsen the situation. Boundary issues are complex, and learning to respond skillfully takes practice.
Whether or not we experience a boundary violation can depend upon how well-resourced we are feeling on any particular day. Sleep, nutrition, relationships, and stress can all influence how we handle boundary issues. Emotional boundaries are fluid and can change from day-to-day.
And, boundary issues go both ways. Often caregivers experience the recipient of their care overstepping a boundary. Yet, if a caregiver is not paying attention, they too can violate boundaries.
So, recognizing boundary issues and learning healthy ways of coping with them is really important for the long-term well-being of both caregiver and care-recipient.
Mindfulness is a key tool in recognizing and working with boundary issues. Sometimes we may not realize that our boundaries have been violated; we just feel that something is not right. When we lack clarity around what is happening, we can react unskillfully, and things just get worse. In this scenario, we can use mindfulness to deepen an awareness of the body and physical sensations. The body does not lie; it can know that something is not right even before we understand what is really happening.
Learning to pay attention to the body through mindfulness practice can also help us pause before reacting unskillfully. One of my favorite pieces of wisdom comes from the writer/philosopher Victor Frankl who wrote, “Between stimulus and response, there is a space. In that space is our power to choose our response. In our response lies our growth and freedom.” When we are paying attention to our own body and mind, we can actually choose our response in any given situation. We can respond to boundary issues in a way that clarifies our own needs while conveying clearly that the relationship matters.
Conveying a clear boundary to a loved one, or to someone we are caring for, can be an act of compassion. It conveys that we are at once, committed to caregiving, and committed taking care of oneself. These commitments are not separate. Finding ways to take care of oneself actually supports better caregiving. Better caregiving is what we are encouraging at Zen Caregiving Project. Let us know how we can support you.
By Celeyce Matthews
Although I love my new job as a neonatal intensive care nurse, I miss my work in hospice on a daily basis. Before I was a NICU nurse, I was a certified hospice and palliative care nurse assistant at Zen Hospice Project’s now-defunct Guest House. The Guest House was a six-bed hospice residence in an iconic Victorian home in San Francisco, caring for people at the end of life. In its own last year of life, the Guest House had fewer and fewer residents due to complex political and financial issues. While it was extremely painful and frustrating to watch that beautiful place slowly die after serving as a graceful home of living and dying for more than 30 years, its decline also afforded some exceptional experiences that I will forever be grateful for. And frankly wonder if will ever be matched in meaning and beauty.
Some weeks that last year we only had a couple of residents at the Guest House, and in my 12-hour shifts, I was able to spend significant time with people in their final days and minutes and be with them as they took their last breath. While there are some similarities between the NICU and hospice, the beginnings and ends of life, the intense clinical pace of the NICU does not allow for the meaningfulness of the work to register as keenly as the spaciousness of the Guest House allowed for, especially in its final year. The deep sense of peace mixed with the shared experiences of love, anguish, sadness, suffering, beauty, and gratitude as I cared for people letting go of life was profound. Real and raw, in the midst of truth and complexity, love, and pain, I found passionate equanimity; I found a home.
“Alan” was chatty the first day I met him. Jittery in his movements, his emaciated limbs shaking in his grand, arching gestures, he told me stories of growing up gay and black in an area of the country not welcoming of these identities. He rarely paused between his words, so incessant was his need to talk, to speak his life as it was slipping away. In the next days, he became silent but insisted on sitting upright on the side of his bed. His long, ethereal body precariously balanced, wavering as if just about to collapse, his eyes half-closed, teetering on the edge. He would sit like this all day, only willing to get in bed to be gently bathed. He also wanted basketball games to be continually on his television. Concerned about him falling, and because I had the time with only one other resident in the house who was being looked after by the other caregiver, I spent hours just sitting with Alan in his room. He seemed to be hovering in a liminal space, not fully here but not gone, as the sounds of a basketball game, the sounds of life, quietly played on in the otherwise quiet room.
As I sat with him, I became attuned to him, knowing when he was about to reach for a tissue to wipe his leaking mouth and handing it to him just as he lifted his hand. Occasionally he would become aware of me and turn toward me and say, “Oh, you’re still here.” “Yes,” I’d say, “Is that ok with you?” “Yeah, thank you,” he would sometimes say, sometimes only finding the energy to nod slowly. In that quiet drama of stillness and basketball and afternoon light and Alan’s struggle to stay upright wavering between life and death, I felt a deep human kinship and connection between us. Our differing backgrounds and current circumstances dissolved in the reality of approaching death. At the rawest and most stripped-down level that the end of life brings, we were just two humans sitting together on the precipice.
And the caring – caring about this man I didn’t really know, caring for his body in ways that he could no longer do for himself – caregiving felt like a sacred thing, one that nourished me deeply. Bathing the dying, changing their briefs, feeding them, receiving their life stories, holding their hands felt like an incredible privilege to me. In a way, I needed it as much as they did. I miss this every single day.
The last time I saw Alan, he had finally consented to lying safely in his bed, no longer able to sit upright on his own at all. It was a busier day, and I didn’t have as much time to sit with him. When I came to say goodbye and tell him that I was going out of town for a week, we both clearly understand that this was goodbye forever. He started to cry and reached for me. I think this was the moment that the closeness of his death became even more starkly clear to him; the chronicling of the lasts and the losses getting close to the bottom of the page. He thanked me, and I could again feel the care and connection between two humans flow between us. I hugged him and quietly beamed my love and gratitude to him, marveling at how loss, love, and sadness are woven into the fabric of life. I was sorry to not be there for his death.
To not flee from these realities of humanity, of life, love, and loss, to stay with them unflinchingly was my job, but more importantly, it is my calling.
Being in the highly clinical and yet heart-centered world of the NICU, these aspects of care can feel sometimes eclipsed by the intense technology and the often breakneck pace. But the moments of placing a sick premature baby on his mother’s bare breast for the first time, or teaching a new father how to change the diapers of his 3 pound baby, or holding and bottle feeding a cute growing baby, I feel the gifts of caregiving. The clinical demands of the NICU are not what I ever wanted to be involved in, but those tiny, fragile babies seduced me.
And so here I am, at the other end of life, the beginning. One day I will have to return to hospice, I truly do miss it daily. Although I may never be gifted with the spaciousness of time to just be humans together living and dying, and engage in slow, gentle, mindful care as I was lucky to do in the dying days of the Zen Hospice Project’s Guest House.
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.
“Working with the dying, you are constantly reminded of what matters: love, kindness, generosity, and our interconnectedness.” ~ Roshi Joan Halifax
Zen Caregiving Project will soon be taking applications for our Spring 2020 New Volunteer Training, to be held in April. The core training — an intensive 40 hours over ten days — is not oriented towards acquiring skills, so much as asking participants to examine and reflect on their own histories of loss and grief. By exploring our relationship to these issues, we become familiar with our own stories of suffering, enabling us to become more comfortable with the suffering of others. In other words, by becoming intimate with our own losses, our fears, and insecurities, we are more fully able to connect to the loss of others. We learn to connect through our shared vulnerability. This reflects the fundamental Buddhist teaching of interdependence and the Zen Caregiving philosophy of mutuality of service.
Please note that our open enrollment period runs until February 28th, and notification of the status of your application will not be sent out until mid-March. Applicants are required to attend all training sessions, including the Ongoing Sessions. We also ask participants to commit to a full year of service, volunteering one five hour shift per week on a regular schedule.
The application form for the New Volunteer Training will be live and accessible here on Monday, December 16th.
Zen Care Giving Project Spring 2020 New Volunteer Training Dates
Wednesday & Thursday, April 15 & 16 (Evening Sessions), 5:45 PM – 10:00 PM
Saturdays & Sundays, April 18, 19, 25, & 26 (All Day), 8:30 AM – 5:30 PM
Ongoing Training (Third Tuesday Evening of the month)
Tuesday, May 19th, 7 PM – 9 PM
Tuesday, June 16th, 7 PM – 9 PM
Tuesday, July 21st, 7 PM – 9 PM
Tuesday, August 18th, 7 PM – 9 PM
Tuesday, September 15th, 7 PM – 9 PM
Reddit is a great platform for asking important questions, I use it regularly and often come across posts that are thought-provoking. I cross-posted one recent question from the platform to our community on Facebook,
“Should I be in the room when they take my loved one off of life support?”
It’s a difficult question with no easy answers. I was curious to hear about the experiences of our followers and ultimately received varied yet quite insightful responses. Below is a sampling of the comments,
The question isn’t should I, but can I. If you can, then be there, and if you cannot … don’t. No wrong or right answer here and no one gets to judge you one way or the other!
Someone said to me it is an honor to be there when someone enters the world, it is also an honor to be there as they exit the world. And suddenly I got it, and felt so much better.
The most important question is…What do they want? What’s important to them? If they wish to be there then WE as a team should support them. We have no right to decide if they can “handle it” or not. We should allow them to decide what’s best for both their family and themselves.
Retired Hospice Chaplain here:
If you feel you can and have good support.
It can be a mystical, beautiful moment to be there at the time of passing, but if you aren’t sure, have someone (maybe a Hospice person) with you. I’ll hold you in prayer.
I recently experienced this with a dear friend who had suffered a massive heart attack and was taken off life support four days later. I knew that she was already gone, but I still did not want her to be alone. It wasn’t gruesome or disturbing; was difficult emotionally and profoundly sad. It helped me know that I was there for her until the very end.
It’s certainly a difficult question. What are your thoughts? You can comment under the original Facebook post if you’d like to leave a response.
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.
Applicants must be able to attend all training sessions. Core training will be held on these dates,
Wednesday, April 15th & Thursday, April 16th, 2020, 5:45 PM – 10:00 PM
Saturday, April 18th & Sunday, April 19th, 2020, 8:30 AM – 5:30 PM
Saturday, April 25th & Sunday, April 26th, 2020, 8:30 AM – 5:30 PM
And ongoing training will be held on these dates,
Tuesday, May 19th, 7 PM – 9 PM
Tuesday, June 16th, 7 PM – 9 PM
Tuesday, July 21st, 7 PM – 9 PM
Tuesday, August 18th, 7 PM – 9 PM
Tuesday, September 15th, 7 PM – 9 PM
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.
“We give life to the previous week’s flowers by creating a mandala as part of our closing ritual.” Cynthia Hogan, Bloom Project Volunteer
At Laguna Honda Hospital, nestled on the west side of San Francisco’s Twin Peaks, there is a secret garden. Tucked into the hill behind the South Tower and accessible only from the Palliative Care Ward, S3, is a serene oasis maintained by the volunteers of Zen Caregiving Project. It is a refuge for the residents, family members, staff, and volunteers of S3.
Every Monday morning, volunteers from the Bloom Project meet there for two hours to cut and arrange fresh flowers that are donated for the residents of the ward. When they are done, they create a mandala out of left over blossoms.
From the Sanskrit, the word mandala literally means circle or disk. They are geometric representations of the universe or wholeness, encompassing both the material and non-material worlds and appear frequently in Buddhist and Hindu iconography as well as Native American culture. Tibetan Buddhism, in particular, has a tradition of creating sand mandalas that are demolished after their completion and accompanying ceremony.
Mandalas are symbols of impermanence, reminders of the fleeting nature of both beauty and life. As the days pass in the S3 garden, the blooms fade and the symmetry of the flowers become jumbled by the wind, a poignant testament to the inescapable reality of change.
The mandalas are created by the group or any individual who feels moved to do so. For volunteer Roberta Weiss, “Participating in mandala creation is a healing artistic activity and meditative practice.” Volunteer Janice Polizzi explains, “When the work is done we stand in a circle and dedicate the beauty to others… Our intention is always to offer well wishes and healing.”
Rosemarie Morales finds connection and meaning in her work with the Bloom Project having had personal experience with the difference that flowers can make for people in care facilities. The joy that she witnessed when bringing flowers to her father was a catalyst for joining the Bloom Project.
For her, building a mandala is just as important as arranging the flowers. “I love being a part of creating the mandala – from being able to realize the uniqueness of what each flower has to offer, to the process itself of creating a pattern and seeing how much even one flower can enhance the collective display of a whole design, to setting intentions out to the universe once the mandala has been completed. It’s a fun and beautiful process that I hope brings light to people’s hearts.”
Listen to Zen Caregiving Project executive director Roy Remer speak with Liz Gleeson, a grief therapist and host of the podcast Shapes of Grief. In this episode Roy talks about death and dying in the Zen tradition.
Through the recounting of our grief stories, integration can begin to happen, both for the teller and the listener. Everyone has a story of loss and everyone’s story offers hope and inspiration to other grievers. Sharing these stories with each other can go a long way in normalising this human experience.Liz Gleeson