by Eric Brandner

Justin Larsen left the room with the men as his wife, Joy, settled into her chair with the women.

It was one of the first seminars they’d attended that dealt with post-deployment caregiving. As Justin did team-building activities with many of the men who’d been injured in the wars in Iraq and Afghanistan, Joy sat in the room listening to their female counterparts unload stories of hardships and the daily trials of learning to deal with a husband, boyfriend or son who’d come back from war a very different man.

“What happened in that room was a lot of venting, a lot of unloading sorrows and issues,” Justin said. “Unfortunately, she was at the very end. And by the time it got around to her [to speak], she was beside herself.

“And she said ‘I am the person you are complaining about.’ ”

In his relationship, Justin Larsen—a veteran of two Afghan War tours who has also been diagnosed with post-traumatic stress disorder—is the caregiver. His wife was injured flying in Afghanistan in 2006, when her plane took evasive action. There were unsecured items in the cabin, and “something or someone,” as Justin puts it, hit Joy’s head. He said she was medevaced out upon landing, spent time getting treatment at Bagram Air Base, and eventually went back on duty at a U.S. detention facility in Bagram, where she served as the night noncommissioned officer in charge.

Her depression grew as her deployment went on. She had debilitating migraines from the traumatic brain injury. And even after she returned to Utah and eventually married Justin in early 2008, they still struggled to find ways to effectively deal with her situation.

And that’s the short version of how she ended up in the wrong room.

“That [experience] took her down so many notches,” he said. “She came back to me and she said ‘I’m sorry I’m such a burden.’ ”

Photo credit USO photo by Eric Brandner

Justin Larsen, an Afghan War veteran who has also been diagnosed with post-traumatic stress disorder, is his wife’s caregiver.

A New Approach to Life

Thirteen years after America’s October 2001 retaliatory strike on Afghanistan, there are hundreds of thousands of American troops who were injured to some degree—whether physical or invisible—while serving in the wars there and in Iraq.

You read their stories in the local paper and hear about well-meaning donors and charities doing great things to give them an advantage. They deserve to be written about, helped and honored. They are part of the less-glamorous 1 percent who volunteered to serve.

But the people you don’t read about are the ones who were standing in the kitchen the day after those service members, who could no longer live independently, were officially discharged.

A RAND Corporation study sponsored by the Elizabeth Dole Foundation and released in 2014 estimates there are 1.1 million caregivers tending daily to post-9/11 veterans. The study says the post-9/11 generation of caregivers is more ethnically diverse, more likely to be employed than their predecessors and also more likely to be helping their veteran through an emotional or drug-related issue.

Larsen is a fellow at the Elizabeth Dole Foundation, which is dedicated to empowering military caregivers and educating the public about issues facing this quiet-yet-large community.

People can conceive the lifelong issues some wounded warriors face—especially those with physical injuries whose stories have been shared across television screens and social media the last decade. The plight of their caregivers, however, is still something few outside the veteran community understand.

At the April USO Caregivers Seminar in Colorado Springs, Colorado, Larsen spoke about the foundation’s spring trip to Capitol Hill to try and influence legislators. During one office visit, Larsen said an elected official asked him “What’s TBI?”

“I think one of the most dramatic statements I’ve heard in a long time is that caregivers as a family—they mourn,” Larsen said while speaking during a panel session. “They mourn for the life that they had. They mourn for the life they wish they had. And they mourn for the life they have now.

“Because everything is different. PTSD never goes away.”

Larsen said one of his family’s most complex issues is dealing with Joy’s memory loss. He has to remind her to take medication—and what specific doses—to make sure she doesn’t accidentally overdose. He believes her traumatic brain injury has gotten worse over time, making her forget to do the simplest things, like shower.

“She’s not a dirty person,” he said. “She’ll just forget.”

‘My Life Became What Happened to My Husband’

Advances in military medicine have saved the lives of many American service members in the past decade. And while loved ones back home have the momentary relief that their loved one survived, they quickly learn their lives have changed permanently, too.

Melissa Novoa’s husband Danny was nearly killed in November 2008 in Iraq when a roadside bomb exploded near where he was standing. | Photo credit Courtesy photo

“Your first instinct is: ‘I want to fix it. I want to make things better,’” Melissa Novoa, wife of medically retired Marine Sergeant Danny Novoa, said last year in an interview at Camp Pendleton, California. “And then you’re acting like a mom and you’re acting like a nurse.

“As it is, I almost lost him. So all I want to do is make it better—fix him.”

Novoa’s husband was nearly killed in November 2008 in Iraq when a roadside bomb exploded near where he was standing. He suffered a traumatic brain injury, was blinded in his left eye and continues to deal with epilepsy and permanently embedded shrapnel.

Once home and stabilized, the Novoas and their children lived vicariously through Danny’s ups and downs at rehab, turning the once fiercely independent mother of three into someone she didn’t recognize anymore.

“My life became what happened to my husband,” she said. “I’m very independent. I have my master’s degree [and] I didn’t go to school for nothing. But yet I was a full-time caregiver.”

Novoa’s story is poignant, but not unique. The rows of chairs at USO Caregivers Seminars are filled with spouses nodding in agreement as panelists and presenters talk about the challenge of losing core tenants of their personality in the quest to take care of a loved one. And for every story someone shares, left out are the thousands of hours they spent in waiting rooms, consulting with medical professionals, researching strategies and trying to keep life as normal as possible for everyone else in the house, even as it’s spinning out of control.

It’s one thing to push hard to do your due diligence on the part of your spouse. But many caregivers consistently delay personal gratification—even basic luxuries like going to a movie for a few hours—because of the fear of what might happen if their significant other was left alone.

“I don’t do anything for myself,” Larsen said when asked how he takes breaks. “I guess I find what I do for myself is whatever I can do that helps make her happy. And I know that’s the wrong answer, and I’m trying.”

So Now What?

Part of caregiving—whether they say it or not—is acceptance.

Caregivers can’t alleviate the trauma or pain of their spouse losing a limb. They can’t heal their significant other’s brain injury. They can’t teach their son to block out the PTSD triggers ingrained when his battle buddy’s MRAP hit a roadside bomb.

Instead, they rely on situational strategies, support systems and programs that help them come up with the best solutions within the limitations of their new situations.

Donate today to help the USO give caregivers the tools and resources they need to care for their wounded service member.

“I always thought of myself as a very strong person,” said Trish DeGrace, caregiver to her husband, medically retired Army Staff Sergeant Conrad DeGrace. “And no matter what I did, it wasn’t about what I was doing, or how much I loved him, it was about ‘I can’t connect with him the way he needs to be connected.’”

The couple deals daily with the repercussions of Conrad’s post-traumatic stress disorder and major depressive disorder that drove him to the brink of suicide while he was in Iraq during a 2007-08 deployment. They credit multiple programs for introducing a support system into their lives.

“She said, ‘I thought it was all about your problems,’” Conrad recalled while looking out onto the Gulf of Mexico from their Galveston, Texas, home earlier this year. “‘And I realize [now] it’s me learning about how to deal with your problems.’

But when your life seems to be spinning out of control, even accepting help can become a challenge.

“That’s one thing that my wife has always brought up. When you turn down someone else’s offer for help, we are denying them a blessing,” Larsen said. “Unfortunately, she and I are pretty good at that. … We don’t like to ask for help. We don’t like to accept it. And I think that’s one thing that we both force ourselves [to do] is to allow that person’s blessing to happen.”

– Eric Brandner is the USO’s director of story development.