In 2003, Robin Cleveland’s world was flipped upside down. Her husband of 20 years, a Marine, returned home from deployment in Iraq with undiagnosed injuries that made it difficult for him to walk or to rise from a seated or laying position. He also had a number of other challenges that affected his entire body and included changes to his behavior, mood, memory, personality and cognitive abilities.
“He came back very different than when he left,” says Cleveland. “When they finally diagnosed him with a spinal cord injury, traumatic brain injury, post traumatic stress disorder and a host of other challenges in 2004 it all began to make sense.”
Cleveland is a peer mentor with VA’s Caregiver Support Program based in Virginia. She currently serves as mentor to at least six caregivers across the nation. She loses count of the exact number because she also mentors caregivers through the Christopher and Dana Reeve Foundation and the Paralyzed Veterans of America Mid-Atlantic Chapter.
While waiting nearly a year for her husband to be fully diagnosed, Cleveland spent a lot of time in the Walter Reed Army Medical Center. She admits the devastation, loss, hurt and pain she witnessed there drove her to help other caregivers.
Her work with caregivers began very organically. It was as simple as a conversation in the waiting area of the hospital, and over time, became more formalized and national in scope. She actually served on a work group through the Wounded Warrior Project to help shape VA’s Caregiver Support Program. She has also served as a VA peer mentor for the last three years and has been associated with the program for the last five.
“If this is what I am going through, then I know that there is someone else out there whose journey is far worse than ours,” says Cleveland. “I feel a responsibility to pay it forward and to share the lessons that I’ve learned.”
In recognition of November’s National Family Caregiver Month, here are a few tips and encouragement for caregivers shared by Cleveland in a recent telephone interview:
“When your life is flipped upside down, you can always find a lot of things to cry about. Instead I choose to find things to smile about.”
Some days can be so overwhelming, you want to scream or cry, or even do a bit of both. It’s during these moments –taking a few deep breaths and expressing gratefulness may help you turn your focus to positive feelings such as happiness and hope. Feelings of gratitude will lift your spirits and brighten your perspective. For the times when that doesn’t work, reach out to VA’s Caregiver Support Line—1-855-260-3274. The line is staffed with caring licensed professionals that can connect caregivers and Veterans with services within and outside of VA, assist with tips and strategies for managing self-care, or just listen if that’s what is needed at the moment.
“I can’t be at my best if I don’t take care of me. I can’t give my best if I don’t take care of me. I think the Caregiver Support Program does an exceptional job of reminding us to put ourselves back into the equation and to sometimes even put ourselves first.”
Caregivers exert a significant amount of energy and attention focusing on the needs of others. An unintended consequence of this outward focus on others is the risk of losing sight of your own needs and feeling depleted. For help building a routine of self-care, take this self-care assessment and use a daily attention diary for one month. Each weekly diary offers daily activities and reflections to focus your attention on much-needed self-care.
“Say goodbye to going it alone.” I would like for every caregiver to know there is an entire community of caregivers, caregiver supporters, and resources to assist you. You just need to take advantage of the help.”
VA’s Caregiver Support Program provides a wide range of support designed to identify health care resources, maintain a safe environment, manage the physical and emotional demands of caregiving, and form a community of support. To learn more about available support programs—including those listed below—call the Caregiver Support Line or contact the Caregiver Support Coordinator at the nearest VA medical center.
Two great resources to consider using are:
- Monthly Telephone Groups: Caregivers looking for a community of support and guidance on a variety of caregiving topics can join a monthly group at their convenience. Audio recordings and handouts are available for those caregivers unable to join the call.
- Peer Support Mentoring: Caregivers of Veterans of all eras may participate in peer support mentoring, both as mentors and as mentees usually for six months. Mentors and mentees communicate using email, telephone, and letter writing depending on what works best for both. For those unable to commit to six months, one-time support may be available through the Compassionate Connections Program.
About the authors: Dore Mobley, a communications specialist with the Veterans Health Administration’s Office of Patient Care Services, worked with peer support mentor Robin Cleveland on this article.