Been There, Done That

Claire Holley knows what it’s like to need somebody, anybody, who has been in the same spot as her – who’s been a family member of a brain injury survivor.

Claire’s daughter Amelia was born with hydrocephalus and Dandy Walker syndrome. She has endured numerous – think more than 50 – surgeries to remove extra fluid pressing on her brain. During or immediately after one of them, when she was just 18, Amelia had a stroke. When the fun-loving, guitar-playing high school senior came to Shepherd Center, she was confused and couldn’t move or speak well.

Like many family members in similar situations, Claire had no idea what to expect next.

“My unofficial peer support came from a friend of a friend, another mom of a brain injury patient who came to see us,” Claire says. “She provided a lot of hope and compassion. She helped just by letting me know that if she and her family did it, we could get through this, too.

“That’s the essence of peer support,” Claire adds. “It helps you see you can have a fulfilling life.”

Claire, a former nurse at Piedmont Hospital, is now coordinator of the Brain Injury Family Peer Support Program at Shepherd Center. Launched in 2018, it’s a relatively recent counterpart to an already robust peer support program for people who have sustained spinal cord injuries.

Claire talked about the program and how her own story informs her work. She was interrupted in the middle of our conversation outside her third-floor office by the wife of a patient with a brain injury who was being discharged the next day. She had dropped by to hug and thank her.

On challenges family members of brain injury patients face:

The biggest is length of time. We’re so used to having things on a calendar. You break an arm, you have a trajectory: six weeks and the cast will be off. But when you break your brain, so to speak, that’s not the case. There are so many factors: type of injury, age of the patient – there’s no set prediction. The hardest part for families to take in is this unknown. The cliché with brain injury patients is it’s a marathon, not a sprint.

On her own experience with that marathon:

It’s been three years – January 31 is Amelia’s stroke-iversary – and we’re still seeing improvements and changes. She still works on core strengthening and balance. Fatigue is still an issue. Some of these things are part of the new normal.

The day the article came out (Amelia was featured on the cover of the Fall 2016 issue of Shepherd Center’s quarterly Spinal Column magazine), Amelia was back in New York in an operating room. And I thought, “Oh my gosh, here we go again.” She ended up in the hospital for 71 days. With brain injury recovery, there are lots of ups and downs. There are setbacks. But we let people know that they can still keep climbing up.

On what peer support offers:

It might seem overwhelming now, but there’s hope. With brain injuries, nobody can tell you how your recovery is going to look. So, we bring in different families, some who’ve experienced more recovery than others, so people see what they can expect with this new normal.

On the need she saw for brain injury family peer support:

Family members are overwhelmed when they’re here and need some support, either through classes or one-on-one meetings. We identified the biggest need for support at the post-acute phase. Shepherd Pathways was the most valuable place to offer that support with weekly classes offering information to help caregivers to care for themselves and their loved ones. Topics include fatigue, difficult behaviors, organizing and role changes within the family, among others.

We’re trying to provide realistic expectations for families. Everyone’s hope is their loved ones are going to return to their pre-injury state. Unfortunately, that’s not usually the case. So, we help people adjust.

On the “first day look” family members have when they enter Shepherd Center:

I know that look, I know that mom look. I know it because it’s been in my eyes. You feel overwhelmed, scared, uncertain, and… tired. A lot of times they – family members – have been in an acute setting for months before they get here. Then they get here, and often it’s the first time they can breathe.

When they’re in the inpatient Brain Injury Rehabilitation Program, it’s an opportunity for families to meet one-on-one with family members who’ve been here – another mom with young kids who knows how to navigate that with her husband here, somebody who’s experienced this and gone through the process. It provides opportunities to meet with others. We have an inpatient class called, “Been There, Done That.”

On what her job means to her:

It’s rewarding to work in a place that means so much to our family personally. It’s the place that’s given our daughter her life back. It’s not a job, it’s an honor to be able to see the hope you can provide by coming along side family members and saying, “You’re not alone, you’re not the only ones.” A shared grief is a lessened grief. You can’t fix it, but being there is a comfort to families where they are.

What’s offered by the Brain Injury Family Peer Support Program:

• Been There, Done That: a class in which family members of former Shepherd ABI patients share stories and answer questions from current inpatient family members. Meets Wednesdays from 3 – 4 p.m. on the 2^nd floor conference room in the Shepherd Building.
• Weekly, topic-based peer support meetings are held for outpatient families enrolled at Shepherd Pathways in Decatur.
• Peer Support Dinners for inpatient, outpatient and community members. Includes both caregiver and brain injury survivor meetings. Held on the 4^th Thursday of each month from 6 – 8 p.m. in the 7^th floor auditorium at Shepherd Center.
• 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.

For more information, or to volunteer, contact Claire Holley at claire.holley@shepherd.org, 404-548-6101 (M), 404-603-4252 (O).

Written by Drew Jubera