Veteran Caregivers Struggle to Stay Afloat

Jan. 27, 2010— -- Kevin Kammerdiener's mother, Leslie, takes care of his every need, which would be fine if he were in preschool.The thing is, "Kamm" is 21. He suffered a traumatic brain injury, shattered bones and burns on 25 percent of his body in Afghanistan in May 2008, which left him in a wheelchair, unable to speak and in chronic pain.

Leslie moved from Pennsylvania to her son's home in Riverview, Fla., to care for him after he spent months at a military hospital in San Antonio.

Now Leslie Kammerdiener, 44, spends her days making sure Kevin eats well, is clean and comfortable, and is not in pain. More recently, she has been helping him rebuild his vocabulary (he can say about 100 words), which he lost after a suicide bomber drove a vehicle full of explosives into his Humvee. By night, she soothes him when he is wakeful, which she says is pretty much all the time.

"I'm lucky if I get two to four hours of sleep at one time," Kammerdiener says.

Mostly, Leslie just wants her once-strapping son to be safe and happy -- to teach him enough words so he can let people know what he needs, maybe even have a relationship one day, she says hopefully, mentioning the prom photo he sometimes cradles and sobs over.

Kammerdiener is among thousands of unpaid caregivers -- parents, spouses, siblings and war buddies -- helping veterans injured in the Iraq and Afghanistan wars get through each day, says Barbara Cohoon, deputy director of government relations for the non-profit National Military Family Association. She says the caregivers are a vulnerable group, often under-recognized, and in need of help to navigate the military's medical system. Cohoon says not all caregivers receive military benefits, even though many have quit jobs, moved out of their homes and drained their savings to care for their loved ones.

"Nobody's got a handle on numbers, but 7,500 is the number bandied about," says Cohoon, whose organization provides counseling and helps families negotiate the health system.

The range of injuries caregivers attend to spans from gashes and fractures that will heal, to comas, amputations, burns, paralysis, nerve damage and brain injuries so severe that cognitive function lingers at the toddler level or below.

The Defense Department's most recent tally of Afghan and Iraq war-related traumatic brain injuries is 161,025. A 2008 report from the non-profit research company RAND, however, put the figure at 320,000 out of the 1.64 million deployed by that time. Cohoon says it's estimated that about 350 to 400 such patients are so severely hurt they will need full-time care for the rest of their lives.

"Invisible" mental health wounds, including post-traumatic stress disorder, are also a major concern for returning veterans, even those who show no outward wounds, says Rene Bardorf, director of the Bob Woodruff Foundation, a non-profit organization that helps the families of injured veterans. It was launched by Bob and Lee Woodruff after the ABC News anchor almost died from a brain injury in Iraq in 2006. Bardorf says it's estimated that more than 300,000 service members have psychological wounds.

"We're seeing complex injuries -- individuals who simply would not have survived previous conflicts, and this has placed an enormous load on families," says U.S. Army Brigadier Gen. Loree Sutton, director of the Defense Centers of Excellence for Psychological Health and Traumatic Brain Injury in Arlington, Va.

Sutton, the Army's highest-ranking psychiatrist, points out that groups such as Cohoon's are trying to turn caregiver legislation -- two bills are now being debated in the House and Senate -- into a law that would give those like Leslie Kammerdiener financial support, including health insurance.

Kammerdiener, who has a degenerative nerve disease, no longer has health insurance, and she relies on donations.

Losses All Around

Ed and Beth Edmundson's son Eric, 29, headed to Iraq healthy and strong in August 2005 and returned in October with a severe brain injury after a bomb exploded near him. He is unable to walk and is cognitively impaired.

Before the injury, both parents had good jobs and retirement savings, but they moved to New Bern, N.C., to live with Eric, his young wife, Stephanie, and their baby, Gracie. They've run through their savings and can't afford health insurance.

"Eric needs help with every aspect of survival," his father says. "It was a loss all around for everybody. A loss of income, retirement, time together."

Financial losses aren't all caregivers rack up. Social lives and relationships change or go away.

"My relationship with my wife today is different than it was four years ago," Ed says. "The weekend before Eric was injured, Beth and I were living in our own home, involved in sea turtle rescues, walking on the beach, and everything's hunky-dory. And the next weekend, your world is caved in."

Their health has been affected by the stress as well. Last fall, Ed couldn't afford to visit the doctor when a chest cold turned into pneumonia. The non-profit group Wounded Warrior Project stepped up with a donation that paid for antibiotics, breathing treatments and steroids.

Recently, an extra strain hit their finely tuned family routine when Beth, who does the bulk of the cooking, cleaning and hygiene for Eric, broke her ankle while playing with Eric's now-5-year-old daughter. Her medical bill topped $46,000.

"Beth and I aren't moving forward. We're a foot forward and a foot back," he says.

Sutton says the military has increased its support resources for families and has more on the way. "There has been a steady crescendo of efforts in recognition for the need to build family resilience," she says.

She points to a family assistance program and a 24-hour hotline. She says the Defense Department plans this spring to release a "caregiver's curriculum," a guide for caregivers and medical staff treating wounded veterans and their families.

Gap In Understanding

Kammerdiener has been disappointed by the military support and says the programs have done nothing for her physical and mental health needs.

Cohoon says many caregivers don't know about federal recovery coordinators, who can help caregivers make sense of the military's medical resources. "They're not letting them even know they exist," Cohoon says.

Getting the physical and emotional health support they need may be easier for those still on active duty, such as Doug McCarron, who returned from Iraq after a blast injury led to a toe amputation and shrapnel wounds in one leg caused nerve damage. McCarron works on a base near his home in Whittier, Calif., but is still healing.

"I have phantom pains, nerve pain, walking challenges. I strain to hear," says McCarron, 39, who also wrestles with post-traumatic stress. His wife of one year, Cherish, 32, soothes him when he has nightmares, but he worries about causing her distress.

Even if they want to, family members may not be prepared to help injured veterans, says Paul Larson, professor of psychology at the Chicago School of Professional Psychology, which works with veterans and their relatives as part of The Yellow Ribbon Project, developed last year with the Illinois Army National Guard. "They come at it as best they can with common-sense wisdom, but there's this gap between recognizing a behavior, like aggression and irritability, and actually handling it," Larson says.

Some families, such as the Edmundsons, have turned to non-profit groups. The National Military Family Association offers healing adventure camps for families where they can share experiences and are given resources.

The Woodruff Foundation funnels donations to community-based projects that support injured veterans and their families in their hometowns.

Larson says caregivers can relieve burnout by creating times of emotional distance between themselves and the patient.

Sutton says it's important to keep hope alive, too. "Troops wage war. Healers wage hope."

The Edmundsons are doing just that. "We made it a goal to protect the nucleus of our family," Ed says. But as their medical bills and house and car repairs pile up, he says, a little extra help would be embraced: "We're holding out and hoping for the caregivers legislation."