compassion

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.

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.