The Vital Support of Post-9/11 Military Caregivers

By Stephanie O'Neill (@ReporterSteph)

It's 6:30 in the morning, and the Allen family of McMinnville, Tennessee, is a swirl of orchestrated chaos. Jessica Allen is directing the before-school rush hour with the skill of a veteran air traffic controller—stepping over dogs and around her kids while packing lunches and taking breakfast orders.

It's a scene you might find in Any Home U.S.A., except for the wheelchair that Jessica's husband, former Army Staff Sergeant Chaz Allen, maneuvers expertly around the kitchen.

In 2011, Chaz stepped on a buried bomb while on patrol in Afghanistan. The blast left him a double amputee with no legs below the knees and only one fully functioning arm.

And it put Jessica among the more than one million family members and friends nationwide who now provide vital caregiving to post-9/11 service members wounded in war.

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Improvised explosive devices (IEDs) became a ubiquitous part of post-9/11 combat about the time that Chaz Allen was deployed to Iraq in 2005.

“Two-thousand-four–2005 was really when the IEDs started to come about... and that was a real big issue,” said Chaz, a powerful, high-energy man who spent more than 14 years in the service, including several combat tours.

During that period of warfare, he said, militia units and foreign fighters were everywhere: “We were (fighting) people who... weren't there to help Iraq, they were there just to kill Westerners.”

For Jessica, at home with the couple's two baby girls, anxiety was a constant companion. She even got to a point where she stopped watching the news whenever her husband was in combat. But that did little to ease her worries.

“You can't help but wonder if you're going to be a widow because... it was real. It was in our face,” Jessica said, adding that more than two dozen men in Chaz's unit died in combat. “I just remember I stopped counting, and I couldn't go to any more memorials. It was just horrible.”

For a number of years, she counted herself among the lucky ones. But on January 22nd, 2011, that luck ran out.

At that time, Chaz was on deployment in Afghanistan. His unit on that day was set up in a dry creek bed, providing backup support to a sister platoon staging a village raid.

“I was walking back and forth between my men, just checking positions, making sure they're staying awake, alert, pulling security,” Chaz recalled. “And that's when it happened. Stepped right on it.”

It was an IED buried so well that a bomb-sniffing dog and metal detectors failed to find it. The explosion sheared off Chaz's legs, blew out his right elbow, and left him buried waist-deep in the blast hole.

He remembers it in vivid detail because, oddly, he said, he didn't lose consciousness. And as his soldiers stared in disbelief, Chaz—adrenaline racing through his veins—began shouting orders at his men—to stay focused on their security detail.

“I'm (yelling), 'Pull security!'” he said, explaining that IED blasts are often precursors to enemy fire. “And at the same time my medic grabs me and my team leader grabs me and they pulled me out of the hole, down to the low ground, and they immediately begin putting tourniquets on my thighs.”

Chaz remained alert long enough to radio his own injuries to the Med Evac helicopter, which flew him to Kandahar. About 24 hours later, he was back in the United States, in surgery at Walter Reed Army Medical Center in Washington, D.C.

And that's where he stayed for months, undergoing repeated surgeries and rehabilitation.

* * *

Jessica was at home when she learned that Chaz had stepped on a bomb.

“I had it set up to where if Chaz was catastrophic, that they would call my mom first, so that way my mom could be with me,” Jessica said.

But when the Army called, her mother fell apart.

“Luckily, my sister was there,” Jessica said. “And so, my sister takes the phone and says, 'The Army called, what does this mean? because Mom is literally in shock.' I said, 'It means Chaz is probably going to die.'”

Later, she got a call from the Army telling her Chaz was alive and on his way back to the United States.

The Army flew Jessica from Tennessee to Walter Reed. And when she walked into his room and saw Chaz awake, relief and gratitude washed over her.

“He could have been a quadruple amputee. He could have been paralyzed. He could have been on a feeding tube, could have been brain-dead. There were so many things on that floor room to room to room. We're seeing it live,” she said. “So, you go into our room, and we're missing a couple legs and an elbow, we got mentally [faculties] intact. I didn't care.”

But while the military teaches family to brace for death, it doesn't prepare spouses like Jessica for a lifetime of caregiving.

* * *

“I got that phone call—that phone call out of the dark when life was just moving forward—that Bob had been hit by a roadside bomb,” said author and speaker Lee Woodruff. “They told me originally he had taken shrapnel to the brain and he was going into surgery—it wasn't clear if he would make it.”

Woodruff became a national advocate for military caregivers after her husband, Bob Woodruff, a long-time war correspondent and newly appointed anchor of ABC World News Tonight nearly died in Iraq.

It happened when his armored vehicle hit a roadside bomb in late January 2006. The blast caused a traumatic brain injury that required a long and arduous course of physical and cognitive therapy.

“Adrenaline is this incredible thing, and it's coursing through your body when you first get the news,” Woodruff said.

The couple had four young children at the time Bob was wounded. And Lee—a freelance journalist and now best-selling author—recalls falling into a netherworld between the life she expected and the life war served up.

“You're not allowed to grieve as a caregiver,” she said. “You're not allowed to grieve in our society, because you're supposed to be so lucky that they're alive. And so, you negate that grief. And I think that creates so many issues for caregivers, whether it's ulcers or migraines or cancer or all of the things that caregivers are so much more prone to.”

And that's especially true for post-9/11 caregivers, said Terri Tanielian, a senior behavioral scientist with the RAND Corporation.

Tanielian is a co-author of RAND's 2014 Hidden Heroes study—the largest-ever study on military caregivers, which found that post-9/11 caregivers differ dramatically from all others.

For one thing, the more than one million caregivers who provide vital support to post-9/11 veterans tend to be the veteran's parent or spouse. And many spouses, like Jessica, are also raising children.

Studies show caregivers in general and those who support pre-9/11 veterans tend to be adult children providing support to the elderly. Post-9/11 caregivers, by contrast, are often supporting veterans with decades of life still ahead of them. And that means many are committing their own lifetime to caring for these vets.

What's more, Tanielian said, these caregivers provide indispensable services that save the nation millions of dollars in both long-term care and health costs. For one in five, it's a full-time job that takes 40 hours a week, or more, according to the Hidden Heroes study. The overall economic value this care provides society: about $3 billion a year.

And that, said Tanielian begs the question: Who is caring for the caregivers?

Research shows post-9/11 caregivers to be more susceptible than other caregivers to health problems, strained family relationships, and workplace problems. And that adversely affects the wounded veteran they're caring for, Tanielian said.

Still, most relevant programs and policies that serve military caregivers do so incidentally—meaning the help or support caregivers get is only as a consequence of their relationship to the veteran they care for, the RAND researcher found.

“There are studies that have demonstrated that if you support the caregiver, it helps improve the outcomes of the care recipient,” Tanielian said.

Woodruff agrees.

“It's the old oxygen mask analogy,” she said. “When the plane is going down, if you don't put it on yourself first and get the oxygen, you're not going to be able to help anybody else around you.”

But finding that time can be challenging for post-9/11 caregivers—two out of three of whom, like Jessica, hold jobs while caregiving.

* * *

Each morning, before the Allen girls are awake, Jessica's up, dressed for work, and helping Chaz with his daily routine.

“I get his bath set up for him, make sure everything is within reach,” said Jessica. “I help him get dressed, because you know how hard it is to button a button with one hand. So, I have to help him with that... Really just helping him adapt is what I do.”

Sometimes Chaz wears prosthetic legs that Jessica helps put on. But his back injuries makes them painful to wear. So, you'll typically find him in his lightweight wheelchair.

On school mornings, the couple splits driving duties, each taking one daughter to school. Chaz can drive himself, thanks to a van modified with hand controls.

This particular morning, he takes their youngest daughter, Ryann, to her school while Jessica drives about 15 minutes in the opposite direction to drop off Deryn.

Mother and daughter chat amiably on the drive, listening to music on the local radio station while catching up on Deryn's schedule, on her upcoming tests, and on the day's after-school plans.

“Go have a fabulous day,” Jessica tells her daughter as Deryn climbs out of the car. “Love you.”

Usually, Jessica would head to her office where she works for herself as an accredited financial planner. But this morning, she drops her car off at a nearby mechanic. It needs an oil change. She's arranged for Chaz to pick her up. And about 30 minutes later, he pulls up in his Dodge Caravan.

Driving it, he said, is easy.

“It's just a simple hand control… hard-mounted to the center of the vehicle. Literally, just a push-and-pull rod system,” he said. “Push is brake; pull is gas. It works pretty good. My chair is adjustable up, down, forward, backward, spin it around.”

Many people, the Allens say, ask them if the U.S. Department of Veterans Affairs provides the van.

“Oh no,” Chaz said with a laugh. “No, no.”

A nonprofit called Help Our Military Heroes gave it free of charge to the Allens, as it does for all wounded soldiers who need one, he said.

Without it, Jessica and Chaz said, running their family as smoothly as they now do wouldn't be possible.

But the van is just one example of the philanthropic generosity the Allens received and that is now available to wounded veterans.

In the first months after Chaz was wounded, another nonprofit group called Hero Miles was a godsend, Jessica said. It provided donated airline miles that made it possible for her to commute back and forth. For months, she spent one week at home with the girls and one week with Chaz at Walter Reed. And it was there she caught the attention of the Obama White House.

“I was very vocal about things,” Jessica said. “I spoke up and raised a little cain here and there and got some stuff done... and one of the guys in charge of Chaz's hospital wing told the president that I was very unusual, because I wasn't angry, and I could talk and make sense and explain things.”

Soon she was working on wounded veteran issues alongside Michelle Obama's staff. And that led to a paid job as director of family caregiving with a D.C.-based veterans group. While there, she learned about the heavy burdens post-9/11 caregivers routinely face.

“I had a mom that was fired by email while her daughter is sitting there in the hospital,” said Jessica. “Another mom, they called her down to the lobby while her son's in surgery. They fire her in the lobby.”

Jessica said she finally had to leave that job, because it required more than her limited time allowed. But the experience gave her a roadmap of organizations that provide assistance to wounded veterans. And that, she said, proved invaluable.

“I think what people assume is because a veteran has access to the VA and care, they just assume that if you want a house, you can just tell the VA and they'll build you a house. No, that's not their job,” she said.

The Department of Veterans Affairs did give the Allens a $75,000 housing grant. That and an outpouring of donations from local businesses and national companies helped the couple crowdsource the building of their wheelchair-accessible home.

“These windows were all donated,” Jessica said, while sitting in her house with a visitor. “A company was following us on Facebook. And... donated all these windows and these beautiful doors, donated all of this. And then a sheetrock company heard about us, they donated all our sheetrock. The brick company heard of us, they donated all our brick… and the HVAC system was donated... Home Depot Foundation came in and donated.”

Lee Woodruff says the military needs more women like Jessica to stand up and rattle some proverbial cages on behalf of military caregivers.

“I had no problem standing in the hall and going, ‘I need this right now!” I call it the Nurse Ratched phenomenon,” Woodruff said. “But you think of the wonderful military family… the last place in our society where manners are required, and they're used to sort of taking orders. They're not used to demanding things.”

Like Jessica, Woodruff spent weeks in the hospital as her husband recovered from his serious injuries. While there, she met new caregivers who were unable to take time off from work to be with their wounded service member.

That inspired the Woodruffs to create the Bob Woodruff Foundation. The organization is a nonprofit that funnels grants to groups that help wounded post-9/11 veterans and their families.

“We step in after they have used and received all their benefits owed to them by the government,” Woodruff said. “And our mission is really just to sort of lead the charge in identifying and finding organizations that already exist out there that are doing great work on the ground and provide grants and stay involved.”

Jessica Allen said that kind of help kept her marching forward during the darkest moments of her early caregiving days. And now, nearly a decade later, her family and marriage are thriving, and her career is growing.

Yet there still are moments when it all becomes overwhelming.

“Every once in a while I really hate this life,” Jessica said. “Every once in a while it really sucks.”

But she said, she's blessed with a supportive network of friends who understand.

“Like my friend, Andrea. I'll be like, 'Alright, it's time,' because she's in the same boat,” said Jessica. “And so, we'll just go set up a trip and hang out with each other and just kinda vent about what the war has done to us and that kind of thing, and we just get it out. But we go have fun.”