In 2018, Rachel Austin Bernstein applied for an Artist Initiative Grant through the Minnesota State Arts Board (MSAB), wanting to create a performance piece about her experiences as a young caregiver. With a background in both performance and nonprofit community engagement, she had also been caring for her mom, Ginger, for 17-and-a-half years. A requirement of the MSAB grants is that artists engage the community in a meaningful way. She got the grant and almost immediately learned her mom would need another major surgery at MD Anderson Cancer Center in Houston, TX.
Between taking care of her mother and creating her performance piece, Austin Bernstein took on the difficult task of finding other young adult caregivers. She knew so few people like her but needed and wanted to interview them. She asked what they needed, discovered where the gaps were, and through a mix of quantitative data and qualitative research, she compiled a packet of information to share with social service organizations so they could use that information in their grant proposals.
Through her MSAB activities, the groundwork for Love Labor Project, a fiscal sponsorship partner at Propel, was laid. She realized young caregivers needed something other organizations weren’t offering, so she and her board decided to create an organization of their own.
A community to recognize labor
Austin Bernstein’s story as a caregiver started when she was 16 and her Mom was diagnosed with ovarian cancer.
“Her cancer hasn’t let up since then,” Austin Bernstein said. While there have been times between recurrences where Rachel and Ginger have caught their breath a bit, for almost 20 years, Austin Bernstein has had to learn what it means to be a long-term caregiver to a parent starting years before almost all of her peers.
“When you are young, there are very few people who understand what it is like to go through this as a young person,” Austin Bernstein said. “You need different kinds of care and support than adults do. It takes a lot out of you to say how your parent is all the time. And, you’re a kid. You don’t always know how to shut down a conversation when you don’t want to answer.”
After 17 years of being a caregiver, she understands how deeply traumatic her experience has been. Her mom’s illness influences every decision she makes.
“It is scary, unfair, and unproductive for a kid to be an expert in the logistics of medical care and estate planning,” she said. “Nobody wants to be an expert in this work. I would much rather wake up and think about what job I want instead of what kind of care my mom is getting.”
As she completed college, she realized that as a kid and young adult no one showed up for her in the way she needed. Even the friends she met outside of caregiving didn’t always get it, though they tried. So, she turned her attention to supporting other caregivers she met in the world, but those experiences were few and far between.
“There is an emotional piece to address outside the logistics of caregiving,” she said. “How do we show up for each other?”
The founding of Love Labor Project
Through the community engagement portion of her MSAB Artist Initiative Grant, Austin Bernstein learned she and her peers craved consistency and autonomy. They needed space to be together, to process, and to say the hard things people who aren’t starting their lives while caring for their parents struggle to understand. She hoped the social service organizations she partnered with would eventually create responsive programming, but when that didn’t happen, she realized she had the foundation for an organization herself.
That’s when she came to Propel Nonprofits to explore fiscal sponsorship.
“My board members have been with me since the beginning,” Austin Bernstein said. “I knew I had a strong group of people, but I wanted to make sure we were making decisions about the organization together. If I make a decision alone, then that isn’t community. I knew from the very beginning that as a founder, I would have to make a few big foundational decisions for the organization and the people committed to it, but the choice to become fiscally sponsored was an easy one for all of us to get behind.”
In creating a nonprofit, Austin Bernstein knew she was taking on risk, but through fiscal sponsorship, she felt she was starting a nonprofit in a responsible way that offered the team access to all the tools they need.
“One of the best parts of the fiscal sponsorship program at Propel is that you get the trainings for free,” Austin Bernstein said. “Everyone has access to skill-building and can feel a sense of autonomy about leading the organization and joining in on the trainings they want. They get more knowledge and feel more confident and comfortable in it.
Fiscal sponsorship was a strategic decision we made to grow at the right rate, and to lay the groundwork of a transparent process for budgeting, designing programming, and sharing in governance,” she said.
The board members and community that make up Love Labor Project are deeply collaborative and active. Through caregiving, they have learned to be resilient, resourceful, and capable, and they know they cannot do the work alone. They recognize caring for a parent is a situation or circumstance coming for most people, and they can try and make that reality a little bit easier.
Members of Love Labor Project at a gathering before the pandemic began in 2020.
Growing and responding
Before the pandemic began in March of 2020, Love Labor Project met once a month to talk through education opportunities, support groups, and to just be together. When the pandemic hit, they moved their informal support group meet-ups to Zoom, giving access to young people across the country. For many months, they met once-a-week knowing they needed connection, and when Zoom fatigue set in, they switched to a bi-weekly structure that felt just right.
“As caregivers, we are used to crisis,” Austin Bernstein said. “We are used to being flexible and welcoming.”
Throughout 2020, they offered virtual events featuring guest speakers, and continued to meet and ask each other what they needed. Topics for training included estate planning, anticipatory grief, and caregiver-specific trainings on managing work/life balance, and challenging family dynamics.
“We’ve got a lot of work to do in the next few years,” Austin Bernstein said. “No matter the format, we are prepared to work together.”
A sentiment that couldn’t be truer as Love Labor Project introduces another new beginning in March 2021: they are welcoming a new co-executive director, Aisha Adkins (MPA, CNP). Adkins brings with her more than a decade of caregiving experience, deep relationships with caregivers and caregiving organizations across the country, and her own organization, Our Turn 2 Care (OT2C), which is focused on providing unique support to BIPOC caregivers. Love Labor Project is unbelievably excited to have Adkins join their leadership team, and to have OT2C become a part of the work. To follow along, visit lovelaborproject.org and follow their social channels.