Families of wounded veterans shoulder burden

The mother kneels at the edge of her son's bed and helps him tie his sneakers.

"Come on, Josh, you can do it," says Christine Cooley, urging on her son.

But Josh Cooley is no child. He is 6-foot-6 and weighs 280 pounds.

His life changed July 5, 2005, in Hit, Iraq.

As his big frame was squeezed into the turret of an armored personnel carrier, a bomb in an abandoned car erupted. Josh was badly burned. A piece of shrapnel pierced his skull, destroying the frontal lobe of the Marine's brain.

Christine Cooley's life now revolves around taking care of her severely injured son.

Providing such intensive care has come at a cost.

Cooley, 60, who was a hairdresser and a waitress, no longer works. Her health has suffered as she is unable to take the required rest after surgeries for blood clots in her left leg.

"I had to take a break and elevate my leg, but when your child is missing half their head, you don't sit down and take a break," she says.

A recently released study by the National Alliance of Caregivers shows that "Family caregivers of U.S. veterans sacrifice their own health and jobs to care for their loved ones."

Since the war in Afghanistan began in 2001, nearly 170,000 service personnel have suffered traumatic brain injuries. About 4,000 are considered severe or penetrating, according to the Department of Defense.

Cooley never thought she would make it to Germany to see her youngest son alive.

Since receiving the call about the bomb blast, she has been constantly at the side of a man who at first could not walk, talk or care for himself. For nearly three years, she "lived in the hospital" with him. She moved across the country as Josh, now 34, was transferred from facility to facility. She bathed him, changed his clothes, helped dress his wounds.

"I used to clean his head," she recalls, sitting in the dining room of the big house in Brooksville where she lives alone with Josh. "There was no skull, and I could see his brain. I learned how to clean his 'trake' " - the hole in his neck where the tracheotomy tube was inserted.

For the most part, Cooley, who is divorced from her husband, Ed, has been on her own.

Many people take care of loved ones. But for those such as Cooley, taking care of someone wounded in war is usually more intensive and stressful, according to the alliance study, called Caregivers of Veterans - Serving on the Homefront.

The study paints a bleak picture of what caregivers - 96 percent of whom are women - are up against.

•Those who look after wounded veterans are twice as likely to provide long-term care, 10 years or more, than non-veterans. They also are twice as likely to be in a high-burden caregiver role and to consider their situation highly stressful.

•A major source of a caregiver's burden is the veteran's health condition, which often includes traumatic brain injury (29 percent), depression and anxiety (70 percent) and post-traumatic stress disorder (60 percent).

•Nearly half of those caring for a veteran provide more than 40 hours a week of care, and nearly half of those who had jobs before becoming caregivers stopped working.

•Most of those caring for veterans reported a decline in their own healthy habits and an increase in depression and anxiety.

Cooley has had help. From the Marines, the Semper Fi Fund, local businesspeople, Palm Harbor neurologist Allan Spiegel who provided free hyperbaric oxygen treatment and her son's former colleagues at the Pasco County Sheriff's Office, where Josh was a sniper on the SWAT team.

Josh was a backstage guest when Toby Keith came to town and has a friend in George W. Bush.

She has had support from her two oldest sons, Ed and Chris, who, like Josh and their father, were Marines.

Cooley says she no longer cries herself to sleep.

But it wasn't always that way.

"In the beginning, when things were really hard for him, I didn't cry for me. I cried for him because he was so vibrant and vital and strong," she says. "I thought that would devastate him, but it didn't. His spirits are good so I don't feel imposed on. If he was nasty or not interactive at all, I'd still take care of him, but that would be draining."

Cooley is also buoyed by her son's recovery, which has amazed medical professionals.

The man with no frontal lobe - he needed a transplant of his lateral muscle to cover his open skull - gets up, brushes his teeth and shaves. He has a horse named Roxy that he rides.

After some help from his mom getting dressed, Josh puts his hand on her shoulder, leans on the 5-foot-5-inch woman who weighs 120 pounds, and ambles over to the Nautilus machine.

With his mom sitting in front of him on the exercise machine "so it doesn't move across the floor" Josh does something else no one expected. Planting his size 14 New Balance sneakers on the floor, he repeatedly pulls the lever toward him, lifting 100 pounds at a time.

As he does, Josh talks about why he works so hard.

"To help other Marines," he says, quietly, the words barely audible.

"Speak up, Josh," his mom says.

"TO HELP OTHER MARINES!" he says with authority.

As the polytrauma liaison officer and chairwoman of the Haley House Fund, she is on-call 24/7, helping families such as the Cooleys cope with the stresses of care and cutting through red tape to get the benefits they deserve.

For Harlan, it's not just a job; it's personal.

In 1962, her husband, Melvin Harlan, was shot down over Vietnam during a classified mission. He was paralyzed. From that moment, Harlan was a full-time caregiver until her husband died in 2003 after a seizure at James A. Haley Veterans' Hospital.

"You didn't sleep much," she recalls. "It was total care. Bladder care. Bowel care. I bathed him. I was totally immersed."

That involvement had serious consequences.

She has had cancer eight times and attributes it in part to the stress of caring for her husband.

There were other issues, too.

"Friends dropped away," she says. "They did not want to come see him like that. The kids say they will come down, but they only come once a year. It is a 24-hour-seven-day-a-week job."

For caregivers, it's a job made even more difficult, Harlan says, by the severity of the injuries experienced in Afghanistan and Iraq.

"Because of the bomb blasts, they are hurt a lot worse," Harlan says. "There are many more trauma injuries to the men and women, more traumatic brain injuries and spinal cord injuries than we have ever seen."

As a result, "families are stretched. Mothers and fathers have to lose jobs. Sisters and brothers are left to do for themselves because parents have to be" at Haley House.

There are other disruptions as well, Harlan says.

"Sometimes, wives and girlfriends see the injuries and can't handle them," she says. "Or there are conflicts with the mother."

The Cooleys know that story.

Josh was a newlywed when he went to Iraq. His wife gave up on him after Josh was injured, and he filed for divorce, his mom says.

Although the injuries from improvised explosive devices may be more debilitating than wounds suffered in previous conflicts, Josh has a big advantage over Melvin Harlan and even his own father, Ed Cooley, a Marine veteran of Vietnam.

Service members coming back from Vietnam were treated like pariahs, Mary Ellen Harlan and Christine Cooley say.

Not so now.

Men such as Melvin Harlan and Ed Cooley "never got the welcome home guys now get," Harlan says. "Now when they come home, people are clapping and coming up to them and thanking them for serving."

There have also been tremendous strides in medical care as well as a greater awareness of the strain on loved ones providing care.

The Tampa Bay area has been at the forefront of many of these changes.

Haley has hired additional occupational and physical therapists, and has forged a stronger relationship with the Department of Defense since U.S. forces entered Afghanistan, says Susan Ward, communications officer at Haley.

In the VA's Florida network, which includes Puerto Rico, there are 182 seriously injured vets living with families - 36 in the Tampa Bay area, Ward says.

"Each one has ongoing case management and a social worker on call constantly," she says.

There have been other changes at Haley and elsewhere in how the severely wounded are treated.

In 2004, the Polytrauma Rehabilitation Center at Haley opened. One of four in the nation, it is designed to deal with caring for the most serious traumatic brain and spinal cord injuries.

In 2005, Gen. Doug Brown, then head of U.S. Special Operations Command, saw a disconnect between families of wounded warriors and the information provided to them about benefits and services. He called for the creation of the U.S. Special Operations Command's Care Coalition, director Jim Lorraine says.

"Our biggest job, in my opinion, is to educate the families and service members to help them make informed decisions" about what services are available and what course of treatment to take, Lorraine says.

Since forces began actions in Afghanistan, about 3,800 wounded special operations force members nationwide have been assisted by the Tampa-based Care Coalition, Lorraine says. Of those, about 850 were severely injured, he says.

In 2008, Fisher House, where families of severely injured and ill vets can stay during treatment, opened at Haley.

President Barack Obama in May signed a new law expanding services for veterans of Iraq and Afghanistan and those who care for them.

The law gives a stipend to caregivers for the severely injured. They also receive lodging allowances and get the training they need to care for their loved ones.

Despite the hardships, Cooley never wavers in caring for her son.

"My son is not dead," she says. "I have to give him the best things I can in life, the happiest kind of life and most productive. If I was depressed, what's that going to do to him?"

haltman@tampatrib.com

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