Volunteering to Support Caregivers
Shepherd Center’s Brain Injury Family Peer Support Program works to support family members caring for loved ones who have sustained brain injuries.
Have you ever volunteered for a cause you cared about? If so, you know that giving your time and effort selflessly is rewarding, memorable and fulfilling.
Ruth Batchelor, peer liaison at Shepherd Center, can relate. After her daughter Jordyn sustained a traumatic brain injury (TBI) in 2016, Ruth began volunteering as a family peer mentor at Shepherd Center. Family peer mentors are caregivers who have navigated a loved one’s brain injury (BI) and have valuable insight they want to share with families who are just starting their caregiving journey.
“Being a caregiver can be tricky, tiring and scary,” Ruth says. “The way I took control was by taking an active role in learning everything Shepherd Center had to offer while I was there for three and a half months with my daughter. Now, I find it rewarding to build trusting relationships with family members and loved ones who are going through a tough time. I want caregivers to know that I really want to help.”
Ruth volunteered at Shepherd Center twice a month supporting family members for several years and has since been hired to work part-time on Shepherd’s peer support team. She also sits on the peer advisory board of Shepherd Center’s Brain Injury Family Peer Support Program, an initiative that officially launched in 2018. The BI Family Peer Support Program is a relatively recent addition to the Peer Support Program which has existed at Shepherd Center since its founding in 1975.
“We saw brain injury caregiver burnout happening and wanted to formalize a way to help families prepare for their new normal,” says Pete Anziano, peer support manager at Shepherd Center. “If we can intervene early on to help caregivers see that life can be good and fulfilling even though their loved one may have lasting side effects of their injuries, then we have succeeded.”
The BI Family Peer Support Program is run by Claire Holley, acquired brain injury peer support coordinator, and Mariellen Jacobs, peer liaison – two women who know what it’s like to be the family member of a BI survivor. At age 18, Claire’s daughter Amelia had a stroke after one of many brain surgeries, resulting in difficulty with cognition, vision, moving and speaking. Since her stroke, Amelia has experienced improvements, returned to school and continues to work to get better each day. Mariellen’s son Clark was injured after he fell, sound asleep, from his loft bed which did not have a safety rail to the hard floor below, causing a brain injury and stroke. Mariellen and Clark have since started a nonprofit organization, Rail Against the Danger, which works to educate students and parents about the need for rails.
While Claire and Mariellen have come out on the other side of these traumatic events, they still deal with the challenges of being caregivers.
“Being a caregiver for someone with a brain injury is difficult,” Mariellen relates. “You are constantly navigating between grief and gratitude. On the one hand, you are grateful that the person is still alive. On the other hand, you experience profound sadness like you’ve lost a piece of them.”
Mariellen and Claire work tirelessly to educate and support family members who have begun their caregiver journey and may be experiencing similar hardships.
“We work with the rest of the rehabilitation team to augment the work they are doing,” explains Claire. “We are not there to make diagnoses or to give medical advice. We are there to relate to people through shared experiences and help them feel heard and supported.”
At any given time, the Brain Injury Rehabilitation Program serves approximately 60 patients on an inpatient basis and an additional 25 on an outpatient basis at Shepherd Pathways, each with loved ones and family members learning how to care for them and adjust to their new normal. With this great of a need, Claire and Mariellen count on a dedicated pool of volunteers to accomplish their important work.
“Our volunteers provide an invaluable service,” Mariellen says. “We are recruiting family peer mentors to help as many caregivers as possible. Ideally, we will build a volunteer pool with a diverse set of experiences so we can relate to patient families no matter what brought them to Shepherd Center.”
Volunteers must complete an onboarding process including face-to-face meetings and online training. Once this is complete, they are cleared to be matched with one of Shepherd’s families currently experiencing a similar injury and prognosis.
“Being a volunteer is so rewarding,” Ruth says. “There is an initial time investment to get started, but the satisfaction you get from someone trusting you and knowing you are there for them is well worth it.”
If you or someone you know would be interested in becoming a BI family peer mentor at Shepherd Center, contact Mariellen at firstname.lastname@example.org or 404-603-5012.
What’s offered by the Brain Injury Family Peer Support Program
Been There, Done That: a weekly gathering where families can grab a snack and share their Shepherd journey with other families dealing with brain injury. Meets Wednesdays from 3 – 4 p.m. on the 2nd floor conference room in the Shepherd Building.
Weekly, topic-based peer support meetings are held for outpatient families enrolled at Shepherd Pathways in Decatur.
A brain injury specific Facebook page called Shepherd BI Peers. Updated regularly, it provides information for family members and patients, and it allows them to ask questions of other members and stay in touch.
Peer Support Meetings for inpatient, outpatient and community members are held on the fourth Thursday of each month in the 7th floor auditorium at Shepherd Center. Dinner is from 6 to 7 p.m. and support groups are from 7 to 8 p.m. Check the Shepherd BI Peers Facebook page for monthly updates as locations and dates occasionally change.
Weekly, peer-led family education classes offered by registration only as part of a new Shepherd Center research study. The study seeks to identify the most effective ways to help caregivers cope with the challenges of caring for loved ones with brain injuries once they transition from the inpatient rehabilitation setting back to their home environment.
Written by Damjana Alverson
Shepherd Center, located in Atlanta, Georgia, is a private, not-for-profit hospital specializing in medical treatment, research and rehabilitation for people with spinal cord injury, brain injury, multiple sclerosis, spine and chronic pain, and other neuromuscular conditions. Founded in 1975, Shepherd Center is ranked by U.S. News & World Report among the top 10 rehabilitation hospitals in the nation. In its more than four decades, Shepherd Center has grown from a six-bed rehabilitation unit to a world-renowned, 152-bed hospital that treats more than 743 inpatients, 277 day program patients and more than 7,161 outpatients each year in more than 46,000 visits.