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Caregiver Support: What Parents of Wounded Veterans Need

A Texas mother learns the importance of respite as she cares for her disabled son

By Sherri Snelling | November 15, 2013
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Sherri Snelling, executive director at Keck Medicine of USC and author of A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care, is a nationally recognized expert on America’s 65 million family caregivers with special emphasis on how to help caregivers balance “self-care” while caring for a loved one.

Rosalinda “Rosie” Babin has always seen the glass as half full, and says she lives with “an attitude of gratitude.” In 2001, she and husband, Alain, were happily preparing to become empty-nesters in their Austin, Tex., home. Their son, Alan, Jr., who goes by “Doc,” had just graduated college. Their daughter, Christy, was about to graduate from high school. Alain, a police commander, and Rosie, an accountant, were former high-school sweethearts and U.S. Army veterans who had “date nights” every Wednesday and took ballroom dancing classes together.
 
But 9/11 changed everything. After the 2001 attack, Doc enlisted in the Army, eventually becoming a medic with the 82nd Airborne division. “I reacted with a mixture of pride and fear,” Rosie says. “In truth I wanted to hug him and wring his neck at the same time.” She knew her son's military experience would be different from her and Alain’s peacetime service. Doc was going to war.
 
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Doc deployed first to Kuwait and then, in 2003, to Iraq. He was in the country only two days when he was shot in the abdomen while helping to keep a supply road open. He lay bleeding, slipping in and out of consciousness for more than three hours before comrades could extract him from the battlefield. From there he was moved to a naval hospital ship and then to Walter Reed National Military Medical Center in Bethesda, Md., where he underwent more than 30 surgical procedures. “He lost 90 percent of his stomach, his spleen and most of his pancreas,” Rosie says. “He was on dialysis and a ventilator, and then he contracted meningitis and hydrocephalus, which caused a stroke that resulted in the traumatic brain injury he has today.” Rosie knew it was a miracle that her son was alive, and she soon realized what his injuries would mean to her and Alain's lives.

A Responsibility That Falls to Mothers
 
A landmark 2010 study conducted by the National Alliance for Caregiving found that of the more than 10 million Americans who care for veterans, seven million are veterans themselves. Most of these caregivers are the spouses of soldiers, but a growing number are parents who care for a loved one who is paralyzed, has post-traumatic stress disorder (PTSD) or, like Doc, suffered a traumatic brain injury (TBI). The study also found that 96 percent of these caregivers are women and 63 percent of them suffer from depression.

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In most caregiving families, the responsibility falls mostly on one person’s shoulders, and for the Babins, those shoulders were Rosie’s. “My life as I knew it completely changed,” she says. “Everything took a back seat to Doc’s care.” She left her accounting job to care for her son at home full-time. The couple converted a downstairs den into Doc's new room and installed a harness-and-pulley system to help lift him from his bed to his wheelchair. “We wanted Doc at home and not in a facility,” she says, "to keep infections down but also to help me, because I didn’t want to travel to and from a facility to be with my son.”

The Value of Respite for Caregiving Families

National Alliance for Caregiving research has found that caregivers often neglect their own health — failing to get proper nutrition or exercise, for example, or missing their own medical appointments. Despite her positive outlook, Rosie could not avoid the effects of caregiver burnout. Her blood pressure rose, she got only three to four hours of sleep a night, and her nutritional and fitness routines suffered. And then Rosie's mother needed to be moved into a long-term care facility, which pushed her, the oldest daughter, into the role of care manager. (Her mother has since died.)

As the pressure increased, Alain encouraged Rosie to attend a Wounded Warrior Project Caregiver Retreat in Nashville. Such getaways offer essential respite and relaxation time, as well as the opportunity to share experiences with other caregivers of wounded veterans in a supportive setting.
 
The retreat helped Rosie recognize that she would have to create what many caregivers call “the new normal.” “I decided we were going to go from the bedside to outside," she says. Always an active family, the Babins, including Doc, now participate in major athletic events together about once a month. They take part in Disabled Sports USA-sponsored activities like surfing, river rafting, snorkeling and rock climbing; the annual Challenge Aspen adaptive skiing event in Snowmass, Colo.; and a marathon in San Diego. The Babins had dreamed of traveling when the kids were out of the house, Rosie says, “and we do travel. It’s just three or four of us instead of two of us, and that’s fine with me.”

In 2010, Congress passed the Caregivers and Veterans Omnibus Health Services Act, which directed the Department of Veterans Affairs (VA) to provide more support — including training, counseling and a living stipend — to caregivers. The department has also established a toll-free 24/7 support line for caregivers (1-855-260-3274) and assigned a caregiving coordinator to every VA Medical Center to handle family queries and help organize the resources necessary to care for a veteran at home.

Rosie and Alain now occasionally get away on their own by taking advantage of the VA's expanded respite care benefit, which allows them to check Doc into a VA facility for short periods, including weekends, for a maximum of 30 days a year.

“The first time we used the respite care was so hard,” Rosie says. “I could not reconcile in my head that because I needed to get away for a break, I would have to hospitalize my son. There were a lot of tears as we pulled away from the facility, but by the second day of our trip, I had both my hands back to myself and I could complete a thought in my head without having to drop everything because Doc was coughing or needed something. I could breathe again, and by the end of the week I was so refreshed.”

When they picked Doc up and he told her that his stay had been fine, she realized what many caregivers have come to understand — that the guilt she had felt was an unnecessary burden she had put on herself. “You have to learn how to turn caregiving off,” Rosie says, “and believe me, it’s hard. It took me a few years.”

(MORE: Caregiver Depression: Unspoken but Traumatic)

Doc has defied conventional medical wisdom that says that most improvements for injuries like his occur in the first two years. He suffered his injury nine years ago, but in the past two years his physical and cognitive abilities, and his speech, have improved dramatically. He has learned how to text, and he and Alain share season tickets to University of Texas basketball games. “And Doc has not plateaued yet in his recovery,” Rosie says. Inspired by Rosie's example, her daughter Christy is now pursuing a nursing degree.
 
Even with their responsibilities, Rosie and Alain haven't forgotten about their ballroom dancing plans. While the lessons were put on hold when Doc came home for good, Rosie says, “We dance every chance we get, even if it’s just in the kitchen at night.”

Rosie Babin's non-profit organization, Help Our Wounded, provides veterans' families with support from experienced caregivers like herself who know how to navigate the VA and military benefits system. My Care Crew, an online community launched by the Wounded Warrior Project, can connect volunteers with wounded veterans and their families thoughout the country.
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