caring

When my own mother was diagnosed with stage four pancreatic cancer in January, I thought, “well, at least I have been immersed in grief and loss studies for more than 20 years.” I have run support groups for families who have experienced the death of a child for more than 18 years. My father died when I was a child. One of my daughter’s died at birth. And here I am now, working for an organization that teaches mindful caregiving. I am surrounded by mindful caregivers. So really, how hard can this be? I am grateful to have an understanding employer who supports my need to have a flexible work schedule in order to accommodate the need for me to travel back and forth to care for my mother during this difficult journey.

Can it really be that hard?

Well, it likely won’t come as a surprise that it is indeed excruciatingly hard, especially for a person who excels at pouring myself into helping others. I excel at giving 150% of everything I have to everyone else. And so what this really and truly means is that I am terrible at giving 100% to myself in times of need.

I have had to shift my thinking dramatically, and I have had to set some of my own guideposts. One question I am thinking about is this: What accommodations do I need to make in order to care for myself so that I can better care for someone else? I recognize that my strength is in caring for others, but my weakness is in caring for myself. I’ve started my own personal list, and I’d love for you to reach out to me and tell me how you continue to care for yourself if this is a struggle for you as well.

Here is my own personal list:

Add reminders to my phone using timers to tell me to take five minutes to breathe. Before I get out of bed in the morning, envision the boxes in my brain and peek inside: If it’s a work day today, take a moment to look inside my mental health box: acknowledge the anxiety I feel about the changes in my mom’s eating and pain level, and then close up the box until the end of the day when I can peek inside again.

Send a text to my mom who lives in a different state: How did you sleep last night? Wait for her response; read it; then tuck it away until evening when I can text her again.

Stay hydrated! Fill up my water bottle so I can drink water all day. Refill it as needed. Practice, practice, practice breathing. Remind myself it’s a practice not a destination. Keep practicing.

Join me in starting your own list. And send me a note to tell me what’s on yours. –Sarah

6:37 a.m.
A light scratching against the door and the morning light coming through the edges of the shades awoke me before my alarm had the chance to go off. You don’t get fed until 7:30 a.m., I mumbled to the cat as she continued to mew. It was Wednesday morning, the last day of classes for my graduating senior.

I grabbed my phone to see if there were any messages from the east coast where some of my family live. Silent. Whew, I thought. No emergencies overnight.

I jumped out of bed, ran into the laundry room to start a load of laundry, pushed the coffee maker button, and opened the fridge to see what I might find to make my son for breakfast on his last day of school.

The morning routine is pretty, well, routine:
Feed the cats.
Feed the dogs.
Feed the kid.
Give the animals fresh water.
Toss a load of laundry into the dryer and a load into the washer.
Walk the dogs.
Kiss my husband goodbye as he leaves for work.
Text my mom who just enrolled in hospice to see if she slept well and how her pain was on a scale of 0 to 10. A two. Great, I wrote back. The daily pain meds should bring that back down to a zero in an hour or so. I’ll check back in a bit later today.

Pour coffee.
Get a glass of water.
Time for a real breakfast or just grab a protein bar? I check my watch.

Several meetings at work today mean less time to meet some deadlines so I head into my home office a bit earlier.

Get a text from my son at school. Did you buy me a yearbook?
Yes, I respond.
They don’t have a record of it, he writes back.
Go ahead and buy one, and I’ll Venmo you the money later, I reply.

The day goes on like this. If I’m lucky, I get to step away long enough to take the dogs for a quick mid-afternoon walk around the neighborhood. In my head, I’m balancing work, my aging mother’s care, my son’s needs, and even the needs of the aging neighbors around me. Occasionally, when I go out to get my mail or pull in my garbage cans, my neighbor will ask for IT support. She’s in her 70s and often wants to communicate with her daughter in England but struggles sometimes with how to do that.

I am a caregiver. My oldest will turn 27 when my youngest goes off to college in the fall. For 27 years there has been someone in my house to take care of. And now, my mother needs more care so I find myself flying up and down the west coast more often. I am a family caregiver. And I am a lucky caregiver because I have the advantage of working from home, taking a moment during the day to respond to the needs of my mother–the hospice nurse may call; the social worker calls sometimes; my mother
calls.

My needs get set aside. Often I am the last one to stop to care for myself. The dog walks, in many ways, are self-care. I can breathe fresh air, I can take a moment to regroup my thoughts. But even then, I’m caring for the pets. The real needs for my own self-care get pushed to the side so often I pause and ask myself: If I were watching me from afar, what would I tell myself?

Stop.
Pause.
Feel the water over my hands as I wash them.
Notice the soap as I hold it in my palm, the lavender pieces acting as a loofah.
Rinse.
Breathe.
Step back into work.
Place everything else into a container in my head and close it up for now.
Find gratitude for who I am and what I do.
I am a family caregiver.
I too need care and nurturing.
How am I feeling?
Notice the feeling.

Acknowledge the feeling.
Thank the feeling.
Breathe.

Begin where I am. Take one breath, and I will go from there

Boundaries–It’s a word filled with lots of expectations and hopes–especially when one thinks about it within the context of caregiving. It is easy to understand the boundary of a property line–a fence, a sidewalk, or even a gate. It is, however, much more difficult to understand and navigate emotional boundaries surrounding caregiving.

Brené Brown, social science researcher and professor, defines them in this way: “boundaries are a prerequisite for compassion and empathy. We can’t connect with someone unless we’re clear about where we end and they begin. If there’s no autonomy between people, then there’s no compassion or empathy, just enmeshment.”

It’s the perfect definition for caregivers and for the work that we do at Zen Caregiving Project. In order to have compassion and empathy, one must define their own boundaries. While this is always easier said than done, we offer a few tools to make sure that you honor your own boundaries.

“Using the S.T.O.P. practice, we encourage caregivers to Stop or pause when they notice someone has crossed an emotional boundary. Then, Take a breath and notice where emotions are being expressed in the body. Observe and consider what just happened. And finally, once you’ve taken a moment to do those three things, Proceed in a skillful way that does not make a tense situation worse.”

Managing healthy boundaries in a caregiving relationship can be difficult and uncomfortable. Please remember, whatever you do, however you respond, be kind to yourself.

The recent call came on a Sunday night around 11:00 pm from my mother’s cell phone. Except it wasn’t my mother on the other end–it was a friend of hers. 

“Hi, Sarah, this is Pat, and I’m in the ER with your mom, and it’s not good.”

Six hours later I was on a flight to Orange County, California where my mother lives. Within 12 hours of that call, I was in the hospital room with her when the doctor came in to tell us, “It’s stage four cancer that has spread to several places.”

The next several days in the hospital are honestly a blur – oncologists, urologists, palliative care, “ovarian cancer,” “no, possibly, uterine cancer,” “no, likely pancreatic cancer.” Pain medication, more tests, more doctors, PAs, nurses, and on and on and on.

Three weeks beyond that phone call, and I could finally take a breath, for a moment, to think about how I went from getting ready on a Sunday evening for a week of work and my son’s school activities, to finding myself as a caregiver for my aging mother and talking each evening to my family over Zoom from 1,200 miles away. 

So this is what they mean by Sandwich Caregiving, I thought to myself as I responded to work emails late into the night and emailed my book club to let them know I’d be out of town for an extended period of time and would step away for the time being from attending (or hosting) book club.

One phone call. Twelve hours. 1,200 miles. And everything in my life (and my mother’s!) had been turned upside down.

By week four as we began to settle into our “new normal,” I began to remember what I had learned in the first Essentials of Mindful Caregiving course I took shortly after joining Zen Caregiving Project.

Pause for just a moment in the doorway.

Take a breath.

Feel the water over my hands as I wash them in between caregiving duties.

Breathe in.

Breathe out. 

Focus on my breath.

The S.T.O.P. Practice

Stop.

Take a breath. 

Observe my environment. 

Proceed with my activity. 

I have an emotional toolkit, I reminded myself as I put a variety of pills into my mom’s new four times a day pill organizer.

Over and over again for the past two months, I am reminded of the value of these courses that we teach. I am also reminded how important it is to remind the caregiver to practice self-care. 

After I tucked my mom into bed at about 8:30 pm during my fourth week, I was reminded of my own need for self-care as I went into the kitchen to get a glass of water and instead sat down at the table for a moment and promptly fell asleep for more than an hour waking up with an imprint of my mom’s placemat on my cheek.

The dishes can wait, I whispered to myself as I crawled into bed to sleep a few hours before the alarm went off to give my mom her 2 a.m. medication.

Breathe in.

Breathe out.

Tomorrow, I thought, tomorrow, I’ll practice being as kind to myself as I have been to my mother. I can do at least this much. 

The streets of San Francisco’s Tenderloin district can appear to be a cacophony of poverty and human suffering: crowded, dirty streets, the occasional smell of urine and feces, a barefoot person huddled on the sidewalk, their meager belongings strewn about them, tents, open drug use. For some, with nowhere else to go, the street is their home; they live their lives in public.

For others, who inhabit small, cramped rooms in single room occupancy hotels—SROs—the street may be their living room, a meeting place, a hang out, a social center, the hub of their social life. 

On a crowded block of Eddy Street, across from the Tenderloin Police Station, stands San Francisco Historical Building #176, home of the Cadillac Hotel.

For the past year, Zen Caregiving Project (ZCP) volunteers have been going to the Cadillac every Friday to provide emotional and social support for the residents living there. The intention is to be able to provide palliative support for residents who are ill and wish to die at home in their room. The first step, however, is getting to know the residents, gaining their trust, and becoming familiar with the culture of the hotel. 

Our work is a collaboration between Zen Caregiving Project and Curry Senior Services, which has been providing a variety of wellness programs at the Cadillac for the past five years. 

The resident population is diverse. Of the 150 rooms, 75% of the population is over the age of 55, 43% are Spanish speaking. Some work regular jobs and go out every day and some rarely leave their rooms. Some are disabled, some show no physical indication of poor health but bear the scars of trauma, addiction, and mental health struggles. And they all have stories, colorful, astounding, heartbreaking stories. ZCP volunteers listen; we are witnesses to whatever the residents want to share about themselves, their lives. 

One of our volunteer caregivers, John Ungvarsky said, “We’ve been able to connect with many of the residents at the Cadillac Hotel and provide a presence for them. Just by being present and being able to listen to them, we are building relationships.” At Zen Caregiving Project we embrace the notion of the mutuality of service, so that witnessing and companioning become a mutual process that serves the needs of both residents and volunteers.

John Ungvarsky is a thoughtful, contemplative environmental scientist who retired from the Environmental Protection Agency in August 2022, and in October 2022 he began his training at Zen Caregiving Project to become a volunteer caregiver at the Cadillac Hotel in the Tenderloin.

“Anybody who has spent time in San Francisco is aware of the Tenderloin,” John said. “It doesn’t have a good reputation. It’s not the kind of place where people want to spend a lot of time. It’s in the news about fentanyl deaths, homelessness, and more.” 

While John knew he wanted to serve in the capacity as a volunteer caregiver, he wasn’t sure what to expect at the Cadillac Hotel. But John also knew that there was a great need to serve there because of all of the people who are suffering, and he was open to seeing how his service would unfold. 

John spends up to five hours a week at the Cadillac Hotel meeting with residents, listening to their stories and finding ways to connect with them. 

In 2006, John was present with his mother when she died, and in 2016, he found himself sitting with his brother, an alcoholic, as he passed away. He discovered in both situations that being present with them as they died were some of the most powerful moments in his life. So he knew, when he retired, he’d want to find ways to sit with others in times of need.

At the Cadillac Hotel, there are elderly sick people but also a great number of middle-aged and young people. Many of the residents have been affected by poverty, homelessness, drugs, alcohol, and/or mental illness and have a desire to stay off of the streets. 

They’ve been through some very difficult periods of their life that have led them to live there. They are isolated, and some don’t get out much. They feel safer being in the Cadillac.

At first, John explained, the residents wondered what the volunteers wanted from them. They were certain that there must be some kind of transactional relationship. But given time and consistent presence, John explained that they have been very successful at building trust.

“We are welcomed each Friday, and we are having a very positive impact on the residents,” he said. “It is a gift because it is teaching me so much about myself. We are touching their lives and they are touching ours.”

John acknowledges that it has been a surprise for him at how comfortable he feels being around the residents. 

“Zen Caregiving Project offers us an opportunity to connect with people in need, and the most important quality for us as caregivers is being vulnerable with the residents, and in turn, they can be vulnerable with us.” 

On March 2nd, Laguna Honda Hospital, where Zen Caregiving Project volunteers have served for over 30 years, announced volunteers would not be permitted on campus indefinitely due to COVID-19. In my third year as a volunteer, that meant I would not gather with my shift mates at 9 AM the following morning for meditation and check-in prior to my regular Wednesday morning volunteer shift on the palliative care ward. Soon afterward, our family’s school district announced that Friday, March 13, would be the last day of school for our three kids meaning we had to manage two weeks of improvised homeschool before the originally-scheduled Spring Break. 

First and foremost I am grateful for our safety and health. In addition to this feeling of gratitude each day since then, I have awoken acutely aware that I and my family members are grappling with how to handle the uncertainty we are facing at so many levels. Will any of us get sick? Will any of our family members get sick? Will we be okay financially? When will this end? Will there be a vaccine? Why aren’t our leaders doing more to protect healthcare workers? If everything is canceled, what are we supposed to do?

For my family, our busyness in our “normal” lives had given us a false sense of control and purpose. Our lives had been filled with non-stop “doing” and whether we liked it or not, we were now being pushed, kicking and screaming, to exist in the present – to simply be in the absence of all of our normal things to do. And it has been really difficult.

One of the precepts that guides our practice as volunteer caregivers is to “cultivate don’t know mind.” The idea is that most of us in our daily lives are strongly identified with our rational thinking minds and that our efforts to impose control and certainty limit the possibilities of what a moment may hold. As Frank Ostaseski, Zen Caregiving Project Co-founder says, “don’t know mind is one characterized by hope, curiosity, and wonder. It is receptive, ready to meet whatever shows up as it is.” 

So in practice, this means that when we enter the rooms of the residents at Laguna Honda Hospital, many of whom are suffering from chronic and terminal illnesses, we leave our ideas and judgments at the door. Being open to what comes when we sit with residents at the bedside means meeting them with an open heart. Letting our rational mind guide us narrows our vision and limits the possibilities of what we will consider. When we meet residents with “don’t know mind,” we can be an open-hearted witness to their experience, whether it is one of joy or suffering. 

While I have had this idea of myself being gradually immersed into a practice of mindfulness over the past three years, the last four months have felt more like a dunking; if there has ever been a time to focus on the present and practice “don’t know mind,” this has to be it. I am practicing letting go of judgment and opening my heart to the possibilities that could emerge. It’s become more clear than ever that the present moment demands our attention, and it is a subversion of our creativity and potential to use our precious human energy to regret the past or worry about the future.

So now as my family and I continue to wake every morning with more questions than answers, I draw upon my training and experiences at Laguna Honda Hospital to be more comfortable saying “I don’t know” when I’m asked when soccer practice will start again, when we can visit Grandma and Grandpa and our friends, and when Coronavirus will be under control. I feel moments, even briefly, of lightness and relief when I am able to experience the freedom of opening my heart to the possibilities. 

When our volunteer community gathers on Zoom to share how each of us is bringing our practice to bear on the current situation, I feel immense gratitude for the wisdom and compassion of our shared community. And being able to bring the openness of don’t know mind to this present moment of conflict, suffering, and overwhelming loss that we are witnessing is how I remain grounded to find hope as I face what the next moment will bring. I don’t know what it will be, but as I’m continuing to learn, despite all of my planning and our always-full calendar, I never did, as none of us ever do.

Nancy Wakeman has been a supporter of Zen Caregiving Project for over 25 years. Here we explore her relationship with the organization, why she continues to support us, and her thoughts on the organization’s impact.

Nancy first heard about Zen Caregiving Project, then called Zen Hospice Project, in the early 1990s. It was a time of change and transition for her: she had lost two friends over a short period and had spent time caring at home for her father who had a stroke that was eventually fatal. During this difficult time, Nancy started to explore meditation and saw an announcement for the Zen Hospice Project Volunteer program, which combined her desire to explore and process her loss, her interest in meditation, and her drive to help others.

After completing the 40 hour Volunteer Program training Nancy volunteered for a year with Zen Hospice Project in the palliative care ward at the Laguna Honda Hospital. When asked what she had learned from the experience she shared her three main takeaways:

I learned a lot. I learned that everything changes in life. Even though I often assume there is stability in my life, I know that everything is still always changing.

I learned the value of being in the moment. And although you can’t always be in the moment, I am now more aware of when I’m not. When I am not being present to what’s going on right now I can become more judgemental and opinionated. When I am in the moment, I know everything is as it is, and I don’t feel I need anything else.

Finally, I learned the power of being with other people. We are all in life together and in a way, we are all one, even though we are all different.

Nancy has continued to support and donate to the organization as it has evolved and changed. She volunteered in the kitchen at the Guest House care facility, later supporting the organization as we closed the Guest House, leading to a greater focus on the education program and volunteering. When asked what moves her to continue to donate to the organization she shared:

I think sitting with people who are dying is really important work, as is supporting caregivers. When my father had a stroke, my mother and I cared for him at home with the support of a nurse. During the day it was my mother and I who cared for him, moving him in his bed, dampening his mouth with water, cleaning him. I understand first-hand how challenging caring for someone you love can be and how essential support is to those in that role.

It is so important to provide resources to caregivers because we, as a society, are reliant on having people in the community who are willing to provide care.

We’d like to take this opportunity to thank Nancy for her financial support of the organization across the years, her engagement with our mission, and her support of our staff and work.