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Beyond the Battlefield: As Wounded Veterans Struggle To Recover, Caregivers Share The Pain

First Posted: 10/14/11 09:31 AM ET Updated: 10/18/11 12:14 PM ET

"Beyond The Battlefield" is a 10-part series exploring the challenges that severely wounded veterans of Iraq and Afghanistan face after they return home, as well as what those struggles mean for those close to them. Other stories in the series can be found here, and listen to reporter David Wood discuss "Beyond The Battlefield" with NPR's Terry Gross here.

Army Staff Sgt. Bryan Gansner was lucky: The IED that exploded beneath his vehicle in Iraq one hot night in July 2006 didn't kill him. It did, however, shatter his heels and ankles and shred his legs, and the concussion bruised his brain, dimming his cognitive and emotional abilities. Jagged shrapnel also peppered his body, leaving him bleeding heavily. Forty of his fellow 101st Airborne troopers lined up to donate blood, and medics and surgeons patched the holes and saved his leg. Medevac planes sped him homeward for advanced surgery.

But as his wife Cheryl, then 24, raced from Kentucky to meet her wounded husband at the former Walter Reed Army Medical Center in Washington D.C., neither she nor he knew that as painful and terrifying as the past few hours had been, the very worst lay ahead.

At first, "he was like an infant, he was so sweet and so doped up," Cheryl recalls. "We didn't have any idea of what was going to happen."

How could they?

When Bryan left with the 101st Airborne for Iraq, Cheryl had tried to prepare herself for the possibility that he would be killed in combat. "I never thought too much about him being wounded," she says. "I was stuck on the part of, if something happened, he'd be dead."

No one, a decade ago, anticipated that the wars in Iraq and Afghanistan would produce more than 50,000 battle casualties, among them some 16,000 young Americans so badly injured -- "ripped out of the hands of death" by advanced trauma care, as a Navy surgeon put it -- that many of them would require lifetime care.

Yet despite all the training and preparation lavished on combat-bound military personnel, there is no training for managing the realities of being severely wounded. Not for the combat troops. Not for their families.




Like thousands of other young Americans, Bryan and Cheryl, married for less than a year, were thrust into the unanticipated roles of "severely wounded soldier" and "full-time medical caregiver."

The first hours can be a traumatic shock: Wounded soldiers often arrive in a coma and swathed in gauze and tubes. Their wives, or mothers, often face immediate decisions about how long to keep them on life support, whether to amputate a shattered leg, or whether to donate the body to medical science if the soldier dies.

Newcomers to this daunting new world often don’t understand that military medicine is terrific at addressing immediate problems -- patching holes, repairing crushed bones, healing the stump of an amputated limb, grafting skin and muscle -- but not so good on the long-term physical consequences of severe wounds. Few families reckoned that those consequences, including chronic pain, abnormal growth of jagged bone and swelling tissue, nerve damage, arthritis, headaches, infections, drug addiction and many others, would persist or even increase over a long lifetime.

Traumatic brain injury and post-traumatic stress disorder, with their accompanying frustrations and emotional storms, also aren’t widely understood by the wounded and their families. Few are prepared for the outbursts of violence, the disorientation and confusion, that persist or can unexpectedly erupt months or years after a patient leaves a hospital.

And it’s certainly not widely appreciated that the primary responsibility for taking care of these long-term problems gradually shifts from the professional staffs of the military and the Department of Veterans Affairs to families -- and specifically to wives and mothers.

For those left to care for a severely wounded or disabled soldier, the stress, over time, can become severe. Caregivers and medical professionals say that it isn’t uncommon for some to eventually feel that suicide is their only way to escape lives that have become traps.

"We've all thought it," says Cheryl, a strong, lively and capable woman with an easy laugh and an ability to minimize the hard times. "Most of the women have felt that way, that the only way out is to kill herself."

"We fought so hard, but there comes a point where it seems you can't live like that anymore, there's no where to turn … it gets so bad."

SHREDDED IDENTITIES

"One of the things everyone missed is that there's a life afterwards, a 'rest of their lives,'" says Sarah Wade. An IED in Iraq blew off her husband Ted’s right arm and left him with traumatic brain injury. After doctors at Walter Reed and at the VA Polytrauma Center in Richmond, Va., tended to his immediate wounds, "we realized that the normal medical model ended, that we didn't know what to do with the rest of our lives."

As time went on, the shape of Sarah’s new life emerged.

"It became more and more obvious I needed to step up to the plate and be a full-time caregiver for the rest of my life," she says.

For all partners of severely wounded veterans, it is a common, and obviously life-altering, realization.

Luana Schneider, an artist and mother living in Atchiston, Kan., wasn't prepared for what happened halfway around the world on a Saturday afternoon in November 2006, when her son, Scott Stephenson, drove over an IED constructed of four 155 mm artillery shells and 10 gallons of gasoline in his Humvee near Iskandaria, Iraq. Shrapnel from the blast punctured her son's body and internal organs and almost severed his left arm.

Bleeding badly, he was soaked with fuel that ignited into a fireball, severely burning him over two thirds of his body. He flatlined twice and suffered several strokes, but the military got him from the wreckage into intensive care at Brooke Army Medical Center in San Antonio by Monday evening.

He was barely alive, but he was alive, and when Schneider got to his bedside, he struggled against the tubes in his throat and mouthed the word, "Mom!" From then on, his mother started down a new path as his primary caregiver.

Having shed their own identities, women like Cheryl Gansner, Sarah Wade and Luana Schneider, find themselves redefined as caregivers. In intensive care wards and long afterwards they eat and sleep beside their injured husbands or sons, empty bed pans, change wet, soupy dressings, feed and bathe them, schedule appointments and manage medications.

They learn to soothe pain and confusion and depression. They struggle with the arcane language of trauma surgery, neuropsychiatrics and pharmacology, and with the military's often-bewildering bureaucracy. Doing everything they can, as Cheryl put it, "to find treatments, research symptoms, compare medications and figure out why things weren't right."

Though many have had to quit their own jobs, they have to continue to pay the bills at home, too. In many cases, they also have to parent and manage the children.

These full-time caregivers often say they feel like enlisted soldiers themselves -- but without the structure, the camaraderie and the institutional support that soldiers have. Many of them find counseling available for their husbands' PTSD -- but not for their own stress and the anger, fear and guilt that often plays out in nightmares.

The wounded receive Purple Heart medals and are called heroes. Too often, the caregivers stand in the shadows -- unacknowledged and unsung.

"I am not only my husband's caregiver, non-medical attendant, appointment scheduler, cook, driver, and groomer but I am also his loving wife faced with my own stresses and frustrations," Crystal Nicely, whose husband, Todd, is a Marine quadruple amputee, told the Senate Veterans Committee in July. "What is upsetting is the lack of support, compassion and benefits" for caregivers, she added. "Helping him through his treatment is what I want to do. But I need the system to help me do that."

After a long struggle, Congress, with the help of Sarah Wade and others, finally prodded the Department of Veterans Affairs to officially recognize, train and pay small stipends to family caregivers. Those certified by the VA will have access to their own mental health services, according to the VA -- and a paid vacation.

Unveiled with fanfare earlier this year, the program is off to such a slow start that Crystal Nicely, whose husband is one of only four Marines to lose both arms and both legs in combat, said that she has "gotten hardly any information on how to participate."

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