Peer Supporters Give Caregivers a Helping Hand
Shepherd Center offers helpful insight to caregivers of family members with spinal cord injury.
Sustaining a spinal cord injury can change a person’s life forever. But these injuries can also be life-changing for family members who become caregivers. Suddenly, they have to help take care of the new needs of their partner, adult child or relative. And while the patient’s needs will change throughout his or her life, the decision to act as a caregiver can be a lifelong commitment. Fortunately, Shepherd Center’s Spinal Cord Injury Peer Support Department and its team of volunteers offer helpful insight.
“As caregivers enter the system, they’re inundated with lots of wonderful information, and sometimes it’s really hard to decipher what the priorities are,” said Minna Hong, manager of the Peer Support Department at Shepherd Center. “Usually a patient is always at the center of it, so sometimes the caregiver’s needs are put to the wayside a little bit. So we’d like to let them know that our resources are available not only while they’re here, but after the fact.
“The Peer Support Department is free to anybody,” Hong added. “We want people to be as independent as possible wherever they are, and we can help them locate peer supporters in their location if they’re not in Atlanta.”
Marcia Pauly learned the importance of peer support. When her husband Bruce was injured in a boating accident 15 years ago, she found it difficult asking others for help, she said.
“It’s kind of like taking a new baby home,” she explained. “You really don’t know what to do.”
But asking for help is essential if caregivers want to give the best care they can, Hong said.
“Marcia told me this yesterday: In order to provide assistance, you have to be able to assist yourself first, like if you’re on a plane. In an emergency, they always say to put the oxygen mask on yourself first before you can help somebody else. And that’s something they have to understand.”
Learning not to feel guilty about taking time for oneself is also important, Hong added.
“If you decide you want to go for a walk, or have lunch with your friends, or want to take a walk on the beach and stick your toes in the sand, you should talk to the person you’re giving care to. Chances are they’ll say, ‘Please do it,’” she said.
Shepherd Center’s Peer Support Department uses several strategies to assist caregivers, including classes, individual counseling and peer support groups. To assist families, the department holds family peer support classes on the first and third Tuesdays of every month. Both the caregivers and the person with the injury can attend classes, which include a question and answer period. The department also holds caregiver support group meetings once a month. When the weather is warm, walk-and-talk meetings have been held outside to give caregivers a chance to express their needs outside of the walls of the hospital. For more information on these classes and support groups contact Hong at Minna_Hong@shepherd.org
“Walking the road with somebody who’s walked it and is continuing to walk it is really helpful, because along the way they’ve figured out how to prioritize things and how to find meaning in things,” Hong said.
Shepherd Center also offers classes on skincare, nutrition, getting people in and out of bed, how to use a lift or a wheelchair, and many other topics that caregivers find helpful. For more info check the web resource on spinal cord injury.
Classes aren’t the only way caregivers get support at Shepherd.
Janice Rodriguez is mother and caregiver to Sean Goral, 24, who was injured in a car accident in 2013. Just being with and talking to other caregivers is crucial, Janice said.
“When you’re at Shepherd, your next-door neighbor’s son or daughter has a similar case, and those people become the people who understand you. Sometimes, friends and family and people visiting generally want to hear that a person is getting better,” she said. “You almost would rather be with people who are experiencing the same thing than with your friends because they understand what you’re going through, because they are facing it, too.”
After Janice and Sean had been at Shepherd for just a few months, Hong approached them about becoming peer mentors.
“While it seemed to us that we had just started, we realized we had come a long way in dealing with his injuries since the beginning,” Janice said. “So, we were trained as peer mentors by the Christopher and Dana Reeve Foundation with me focused on family members, while Sean got certified to talk with patients.”
“All I can do as a mentor is share our story,” she added. “To hear somebody later tell you that your talk was helpful and thank you is huge. It helped us feel stronger. It helped me feel more capable as a caregiver.”
In addition, the Peer Support Department can help caregivers apply for grants to help with procuring the devices that will make life easier.
“Very early on, Minna grabbed us by the hand and showed us how to apply for grants,” Janice said. “We got the first few, and I think that builds your momentum for doing things like getting a van, getting a back-up wheelchair. Doing that early on gave us the confidence to think about what else we needed.”
Being a caregiver for someone with a spinal cord injury isn’t easy, not by a long shot, Marcia said. Figuring out what the person can and cannot do is a challenge. Understanding that there are some things you will never be able to do with them again is difficult.
“Having the connection of the peer support group for 15 years and being able to talk with people in a similar situation and to see other people thrive, grow and get through things is huge,” she said.
In addition, individual counseling can be tremendously beneficial for the caregiver.
“When I'm tired or stressed, I forget that I'm not alone,” Marcia said. “That's when I need to reach out for the help that is there. I am grateful that I have a really good life and I'm lucky to have a partner like Bruce as well as other resources and support for Bruce's care.”
Hong noted a significant realization that most caregivers experience. “I’ve always said the injury will hit the caregiver the hardest once they get home and they’re in their own surroundings, so it’s important for them to know there’s somebody they can reach out to –even outside Shepherd Center – to be able to have a conversation or even a listening ear. Sometimes, it’s not that they want someone to resolve the issues or problems, they just need a listening ear without condemnation or advice. Sometimes, they just want to be heard.”
TIPS FOR CAREGIVERS
Don’t let yourself get overwhelmed; ask for help instead.
Make a list of the things you need help with. When people say they want to help, point to the list and they can choose what to do.
If people want to bring food and you don’t need it today, ask them to freeze it in serving sizes.
If people offer to help sit with the injured person, let them. They don’t have to talk; sometimes just sitting or watching a movie is nice.
If people want to know about the injury, you can direct them to information on Shepherd Center’s website.
Have a peer support buddy for the patient and/or caregiver.
Remember, the caregiver needs some time for herself or himself to recalibrate; otherwise, they become injured, too.
Use the Peer Support Group’s Facebook page to get answers; chances are if one person has a question, 10 others have it, too.
Written by David Terraso
Shepherd Center provides world-class clinical care, research, and family support for people experiencing the most complex conditions, including spinal cord and brain injuries, multi-trauma, traumatic amputations, stroke, multiple sclerosis, and pain. An elite center recognized as both Spinal Cord Injury and Traumatic Brain Injury Model Systems, Shepherd Center is ranked by U.S. News as one of the nation’s top hospitals for rehabilitation. Shepherd Center treats thousands of patients annually with unmatched expertise and unwavering compassion to help them begin again.