As more troops than ever are surviving the fearsome injuries of war, parents are increasingly being thrust into the role of long-term caregiver.
Originally published in AARP The Magazine.
CYNTHIA LEFEVER DIDN’T GET A CHANCE TO SEE HER SON Army Specialist Rory Dunn before he shipped out to Iraq on 24 hours’ notice in March 2004. The strapping, gregarious athlete—six feet three and broad shouldered, with mischievous brown eyes—had enlisted two years earlier, when construction jobs started drying up in the Seattle area. “I was really upset,” says Cynthia, 57. She knew the war in Afghanistan was escalating and an invasion of Iraq seemed imminent. “Naturally, as a mother, I was afraid for his safety and welfare,” she says. “But he was making an adult decision. I supported it.”
Three months after Rory’s deployment, on his 22nd birthday, Cynthia was sitting in her family room in Renton,Washington, composing an email to him that included birthday greetings from his friends and relatives, when the phone rang. It was Rory’s captain, calling from Fort Drum, New York. The officer delivered his news with a shaky voice: A pair of IEDs (improvised explosive devices) had blown up Rory’s Humvee while he and his unit were on escort duty near the city of Fallujah. Shrapnel from the simultaneous blasts had pierced the unarmored vehicle. The captain offered few details about the incident, which killed Rory’s best friend and another soldier with them in the Humvee. But he did explain that Rory had suffered an open-head injury and was “critically wounded.”
Cynthia went into emergency mode. She held her emotions in check while she went looking for a pencil and paper, then returned to ask more questions: Where was he now? What exactly were his injuries? What does “critical” mean? Upstairs she could hear Rory’s stepfather, Stan Lefever, 48, arriving home from work. By the time he set down his briefcase and came downstairs, Cynthia was off the phone. She still didn’t know exactly how bad Rory’s injuries were. Crying, she turned to her husband. “Our boy,” she said. “He’s hurt.”
The next day Cynthia and Stan were on their way to a U.S. military hospital in Landstuhl, Germany, along with Rory’s three siblings and his biological father, Patrick Dunn, to wait for Rory to arrive from Iraq. Five days later, after doctors had stabilized Rory enough to move him, he was carried into the Landstuhl hospital on a stretcher. The only things Cynthia recognized were the bottoms of his size-12 feet. His right eye was gone, and the left one was swollen. Sixty staples held his scalp together. A surgeon told Cynthia, who is Catholic, that Rory probably wouldn’t survive. Despite this, she refused to let a priest administer last rites. Instead, knowing the blast had rendered him nearly deaf, she bent over the bedside with her lips near his ear. “This is your mother,” she shouted. “You will not die. Don’t you dare die.”
AT THAT MOMENT, CYNTHIA BECAME one of a growing number of parents who are, by necessity, stepping back into the role of caregiver for their children who are returning from the wars in Iraq and Afghanistan with debilitating and often long-term injuries. According to officials from three national organizations—the Wounded Warrior Project, The Military Family Network, and the Coalition to Salute America’s Heroes—an estimated 10,000 recent veterans of these conflicts now depend on their parents for their care. Working unheralded, these parents have quit jobs, shelved retirement plans, and relocated so they can be with their injured sons and daughters. Many have become warriors themselves, fighting to make sure this new wave of injured veterans gets the medical care and rehabilitation it needs.
These parent caregivers, many of them boomers and some older, face a 21st-century challenge: Their children are coming home in unprecedented numbers with injuries that would have been fatal during earlier conflicts. “This is a war of disability, not a war of deaths,” says former Army physician Ronald Glasser, author of Wounded: Vietnam/Iraq (George Braziller, 2006). “Its legacy is the orthopedics and neurology wards, not the cemetery.” Not only have better helmets and body armor saved lives, but battlefield medicine now borders on miraculous. Someone arriving at the Air Force Theater Hospital in Balad, Iraq, has a 96 percent chance of survival. He or she can sometimes be stateside within 36 hours of the injury. As a result, there are just 6 deaths for every 100 injuries in Iraq and Afghanistan, compared with 28 deaths per 100 in Vietnam, and 38 in World War II, according to Linda Bilmes, a researcher at Harvard University’s Kennedy School of Government.
If this survival rate is heartening, the flip side is that many of these injuries are fearsome and require extended and complicated care. Part of the reason is that the nature of warfare has changed: today’s troops face a constant threat of IEDs. When these makeshift bombs detonate, they throw off pressure waves so intense that bystanders’ brains literally bang around in their skulls. “These are enormous explosions,” says Glasser. “The physics are astonishing—they will turn over a 70-ton tank. Anyone caught in the blast wave is going to be in trouble.” Sometimes injured brain tissue swells so dramatically that part of the skull must be removed to let the brain expand.
As of April 29 the Pentagon counted 31,848 wounded service members in the current conflicts. Independent experts say that is a conservative figure. They estimate the number of brain injuries alone might total 320,000, or 20 percent of the 1.64 million who have served so far—a number that S. Ward Casscells, the assistant secretary of defense for health affairs, calls “plausible.” In addition to the physical injuries, there are thousands of cases of depression and post-traumatic stress disorder (PTSD). Last year military screeners detected psychological symptoms in 31 percent of Marines, 38 percent of soldiers, and 49 percent of National Guardsmen returning from war.
For many of the newly injured, most in their late teens and 20s, the logical direction to turn for care is toward Mom and Dad. Many of the wounded are still single. Others are married to partners who can’t or don’t want to care for gravely injured spouses. As a result, across the nation, parents end up scrubbing burn wounds, suctioning tracheostomy tubes, and bathing their adult children. They assist with physical and occupational therapy. They fight for benefits. They deal with mental health crises and help children who have brain injuries to relearn skills. They drive back and forth to Veterans Affairs (VA) hospitals for outpatient appointments. In short, they put their own lives on hold.
Patty and Bob Harvey, both 58, for example, were looking forward to retiring early and moving from the Los Angeles area to northern California’s Humboldt County. But their son, Private First Class Nick Harvey, returned from Iraq in April 2005 with a mental illness that requires him to live at home, under his parents’ constant supervision. With 27-year-old Nick’s health their top priority, relocating is now not an option. “We can’t take him away from his comfort zone,” Patty says. “We don’t know what might cause a psychotic break.”
Veterans’ groups say the Harveys’ story is not unusual. “I know many parents who are entering late middle age, some in their 50s and 60s, who are now full-time caregivers,” says John Melia, executive director of the Jacksonville, Florida-based Wounded Warrior Project, which assists severely injured service members and their families. “Lifelong dreams have been shattered. The things that you do in your golden years—they’re not getting to do that kind of stuff because they’ve now got another job: full-time caregiver.”
FOR SOME PARENTS, LIKE 81-YEAR-OLD FRANCISCA MARTINEZ, the upheaval of caring for a wounded veteran is temporary—but it is an upheaval nonetheless. In June 2005, Francisca learned that a suicide bomber had attacked her son’s convoy outside Kandahar, Afghanistan. Ramiro Martinez, 50, a first sergeant with the Texas Army National Guard, had gotten close enough to see his attacker’s face before the bomber’s yellow station wagon exploded. The blast burnt Ramiro’s arms and face and sent a two-inch steel fragment through his helmet into his brain.
Francisca had never lived outside Texas’ Rio Grande Valley, where she raised fifteen children, plus a niece, in a modest wood-frame house built by her late husband, Eloy. Even now, her home—on a dead-end street off a farm road outside San Benito, Texas—fills up every afternoon with the grandchildren she babysits after school. When Francisca found out about Ramiro’s injuries, however, she didn’t hesitate to travel to Brooke Army Medical Center in San Antonio, where she stayed with Ramiro’s wife, Mary Jane, for about four weeks. She knew her son’s wounds were going to be serious, but she was ready to do whatever needed to be done. “I have to be brave for my kids,” she says.
Doctors had to remove part of Ramiro’s brain, which paralyzed the left side of his body. Consequently, he had to undergo intensive physical therapy. During the time he was fighting to regain the use of his limbs, Francisca fed him, massaged his legs, and made sure he was comfortable. She also provided company and respite for 46-year-old Mary Jane. “If I was tired, she would tell me, ‘Why don’t you go take a nap and then come back?’” recalls the sergeant’s wife. “Or she would say, ‘Why don’t you go get something to eat?’” Together, the two women assisted Ramiro for 16 hours a day, until he gradually started walking again. Eventually he moved home to Austin, where he now receives outpatient care.
Unfortunately, not every parent’s story ends as well. Before he was injured in Al Anbar, Iraq, Marine Sergeant Shurvon Phillip told his mother, Gail Ulerie, 48, not to worry about his safety. “Everything is gonna be all right, ma,” he had said. “I’m reading my Psalms.” Then, in May 2005, Shurvon’s Humvee hit an IED. The resulting brain injuries left him quadriplegic and unable to speak. Gail, an immigrant from Trinidad, had to quit her two jobs so she could take care of her 27-year-old son.
Initially, the work overwhelmed her. “Lord, I don’t think I can do this,” she cried out one day while bathing Shurvon. But, many surgeries and infections later, Gail has resigned herself to her new life caring for her son. Her time is now spent ferrying Shurvon between hospitals, rehabilitation centers, and their home in Richmond Heights, Ohio. She keeps him clean and helps exercise his arms and legs. And because he is prone to frequent vomiting, she always stays near him to make sure he doesn’t choke. The VA pays for eight hours a day of home health care. The rest of the time Gail is on her own.
As with many parents in Gail’s situation, the stress can be crushing. Gail struggles to concentrate: “Sometimes I think I might have a brain injury myself,” she says. Occasionally she binge eats. She wears a hairpiece to cover the thinning hair on her scalp. Without a job, she cannot afford treatment for the cataracts doctors say could blind her. But she continues to resist moving Shurvon into a long-term care facility. “Nobody can take care of Shurvon like I can,” she says.
BACK IN LANDSTUHL, GERMANY, CYNTHIA LEFEVER’S PLEAS to her son not to die paid off. Despite the doctor’s grim prognosis, Rory Dunn did survive. One day after he arrived in Germany, he was transferred to Walter Reed Army Medical Center in Washington, D.C., still in a coma. “We were told he’s not gonna wake up,” Cynthia recalls. “Then we were told if he does wake up, he’s gonna be pretty much a vegetable.” But when he did regain consciousness six weeks later, Rory knew his name. When he said, through the speaking valve of his tracheostomy tube, “I’m all right,” one of the doctors lifted Cynthia and twirled her around in an impromptu dance of celebration.
Rory wasn’t all right, though. He was missing his right eye. He was blind in his left. He couldn’t walk, and he could barely hear. He needed surgery to repair his shattered skull. And the frontal lobe of his brain was damaged, which left him unmotivated to leave his bed and uninhibited about expressing anger. He threatened suicide, declaring, “I don’t want to live this way.”
Cynthia, who had packed just one bag before she left her home in Washington State, moved into a hotel near the hospital and remained there for ten months. Her husband, Stan, shifted his work schedule so he could visit her. As doctors worked to restore Rory’s body—rebuilding his forehead, transplanting a cornea, teaching him to walk again—Cynthia worked to restore his independence. She played games with him to exercise his brain. She corrected him when he made inappropriate comments. When Rory finally became an outpatient and moved into his mother’s hotel room, she pushed him to wash his own clothes and handle his own money. “I know you’re blind,” she told him, “but you know your way to the laundry room.”
It was a challenging time, emotionally and financially. Cynthia had given up her job, and Stan was missing overtime opportunities. Travel was expensive. When the couple talked by phone, “he’d have to listen to me moan and groan about the system and the Army and my frustrations,” Cynthia says. Even their biweekly visits grew strained. “We could hold each other, but Rory was in the room with us,” Cynthia says. “There was no lovemaking for a long time. That was very difficult.”
Equally challenging was Cynthia’s belief that the Army was trying to rush Rory’s discharge before he was ready. If he officially left active duty, Rory would be transferred from Walter Reed, which the military runs, to the VA medical system, which falls under a different branch of government. He would, therefore, be under the jurisdiction of a different health system. Cynthia was convinced her son still needed the care of Reed’s top-notch surgeons, but the Army wanted him to sign a form initiating the discharge process. “Within days of his coming out of his coma, the colonel at Walter Reed was at Rory’s bedside, putting a pen in Rory’s hand,” she says. “Rory had no forehead. No eyesight. No hearing. Couldn’t walk. He was doped on fentanyl.” Cynthia walked over and took the pen out of the soldier’s hand. “Rory’s not signing anything today,” she recalls saying.
Thus began a nine-month campaign to keep Rory at Walter Reed, with its depth of expertise in treating battlefield injuries. “You have to present a case, and it’s almost like being an attorney,” Cynthia says. “When I wasn’t with Rory, I was on the Internet researching. I was in the library. I was writing letters.” She attended meetings with hospital administrators. She sought the support of Senator Patty Murray (D-WA), who became a friend and an ally. And she collared politicians who visited Walter Reed for what she calls photo ops with the wounded. “They would come to Rory’s door, and I would say, ‘Who are you? Give me your business card. What can you do for my son today?’” All that “badgering,” as she calls it, paid off: Rory was not discharged until he felt well enough to enter an inpatient VA rehab program in Palo Alto, California.
Assistant Defense Secretary Casscells says he’s aware of early-discharge complaints, which he concedes are “legitimate for some people.” But he says he doesn’t know how widespread the problem is. “There’s a tendency of people to send good news up the chain,” he says. “Some of the bad news doesn’t reach me.” Casscells says the Defense Department does try to transfer service members from the military system to the VA system “as soon as it’s in [the patient’s] interest,” because many VA hospitals “are more modern than Army hospitals.” But he adds that parents need to speak up when they feel their children are being ill served. “On your team you need a champion,” he says. “You need a nag, a hysteric, someone with computer skills, and someone who can read the legal fine print. It’s daunting,” he admits.
Parents of injured combatants agree that advocating for their wounded children is one of the hardest—and most essential—parts of what they do. “I’m not badmouthing the armed forces,” says Colorado Springs resident Jerima King, 50, whose daughter, Army First Lieutenant Anna King-McCrillis, 26, suffered a brain injury in Iraq. “But a soldier can fall through the cracks if there is not somebody there whose only purpose is to make sure that they’re safe.”
CERTAINLY, CYNTHIA WENT TO EXTRAORDINARY lengths to make sure her son Rory was safe. While he was awaiting surgery at Walter Reed, he was temporarily admitted to Hunter Holmes McGuire VA Medical Center in Richmond,Virginia, for special brain rehabilitation. There, Cynthia says, he was confined, without a call button, to an enclosed bed (she calls it a “caged bed”). One time, Cynthia says, after Rory wet the sheets, a nurse called him a “dirty boy” and made him sit naked while she changed the bedding. As the month wore on, Rory grew increasingly demoralized. “I raised my hand to protect the U.S. Constitution,” he says. “They locked me in a cage.” After seeing her son in such distress, Cynthia would sign herself out, then sneak back to Rory’s room to make sure he wasn’t being mistreated. VA officials insist Rory received proper care while at McGuire. They say he was restrained for his own safety and provided with a call button, and nurses monitored him regularly. “To our knowledge,” the agency said in a memo, Rory was never treated “in a condescending manner.”
But military families and their advocates say Cynthia’s dissatisfaction with her son’s treatment is all too common. “For too many, the initials VA stand for ‘Veterans’ Adversary,’” says Representative Bob Filner (D-CA), who chairs the House Committee on Veterans’ Affairs. Patients can wait weeks or even months for appointments. Case managers often seem overloaded. Mental health treatment is inconsistent: In 2006 a VA deputy undersecretary, Frances Murphy, called it “virtually inaccessible.” And in many cases those who request specialized therapies at civilian hospitals are denied. For many parents, dealing with the VA becomes the most frustrating part of their child’s recovery. “You have to fight every single day to get your soldier what he needs,” says Valerie Wallace, 46, who lives in Odessa, Florida. Her son, Sergeant John Barnes, 24, suffered a brain injury in Iraq.
Michael Kussman, the VA’s undersecretary for health, says the department is striving to improve its care—cutting the waiting time for appointments to 30 days, hiring “transition advocates” to help patients through the system, and adding almost 4,000 additional mental health specialists. VA hospitals are equipped to handle the needs of most returning service members, Kussman says, but the agency will occasionally outsource care to civilian hospitals if it’s “the best thing for the patient.”
RORY DUNN’S MOTHER, CYNTHIA, DIDN’T KNOW what his life—or her own—would look like once they returned home to Washington State. His recovery, though, has exceeded doctors’ expectations. At 26, he lives on his own, 15 minutes from his mother and stepfather, and he spends much of his time traveling and meeting with other wounded soldiers. His cognitive skills have returned, but some of the brain damage from the blast remains. “My fuse is a lot shorter,” he says. “I don’t have much patience for stupid people. I get irritated.” He’s not having as many nightmares and flashbacks. He can watch fireworks without being spooked. But in other situations Rory remains vigilant. He can’t ride buses because of the strangers, and in restaurants he sits with his back to the wall. He has limited vision and hearing. Still, Rory says, he remains positive about his future.
Though Cynthia no longer needs to care for Rory 24-7, “the whole experience has made us closer and stronger,” she says. And it has given her a new cause. Cynthia now spends her time advocating for wounded veterans. She speaks at conferences, meets with families and government officials, and in 2007 spoke before a Defense Department task force studying the military’s mental health care system. “We need to get our priorities straight,” she testified. That includes setting up a more ambitious and responsive system for treating and rehabilitating warriors with brain injuries and PTSD. “There are many veterans falling through the cracks,” she says.
Cynthia knows she’s lucky because of the way things turned out with Rory. Not all veterans have families who can work the system as she did. Some don’t have families at all. And what happens when severely disabled veterans outlive the parents who are caring for them? “During the year we spent at Walter Reed, and our time in the rehab centers, we saw so many families who didn’t know what to do,” she says. “We’re all responsible now for this new generation of vets. And it’s not just the service members we have to be concerned about. There has to be care and support for their caregivers, too.”