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Military Family Caregivers Share Their Triumphs, Pain

Decades after loved ones suffered battle injuries and illness, the caring continues

military caregiver providing personal assistance
Christian Cashmir / AARP

During the month of November, our nation honors military veterans who have served their country. In the past few years, that circle has widened to acknowledge and include military spouses and children, who often bear the stresses of caregiving and pay the day-to-day price of war.

Our family experienced this firsthand when my husband, Bob, was injured when a roadside bomb hit a vehicle he was traveling in while covering the war in Iraq. We founded the Bob Woodruff Foundation to ensure that our post-911 veterans have access to the highest levels of support and resources when they transition back to the home front.

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There are more than 5.5 million veteran caregivers in this country, according to the Rand Corporation, and this group provides an average of almost 24 hours of caregiving per week. Some 45 percent of unpaid adult caregivers reported signs of depression (compared with 17 percent of non-caregivers), and more than 30 percent said they’d had suicidal thoughts (compared with 3.6 percent of non-caregivers). “Much of the burden of care falls on these caregivers, the ‘hidden heroes,’ who pay a considerable personal price,” says Anne Marie Dougherty, CEO of the Bob Woodruff Foundation.

Spouses and family members from previous wars, including in Korea and Vietnam, have silently served in caregiving roles for decades. Most Americans assume that our government and the Department of Veterans Affairs (VA) cover many of these costs and services. But the work of a caregiver is often unpaid, and the duties involved make it difficult for the spouse to work outside the home without requiring additional care and cost. 

Sharing stories and experiences is a time-honored way to help ease hardship and form community. Here are the stories of four caregivers, all Elizabeth Dole Foundation fellows, that provide insight into the lives of those caring for Vietnam-, Iraq- and Afghanistan-era veterans. They credit the foundation for helping to ease the sense of loneliness and for connecting them to resources and caregivers across the country. Their inspirational attitudes and willingness to share their wisdom will help others on this path.

Caregiving through a degenerative disease

It was the second marriage for both Marty Douglass, now 71, from Jackson, Mississippi, and Ed Douglass, 75. They met in Houston, at a shooting range where Ed was working after his military service. “I was a traveling saleslady,” explains Marty, “so I wanted to learn how to protect myself and safely handle a firearm, and Ed was interested in giving me a few pointers.” They developed a shared passion around the recreational shooting of firearms patented before 1900. 

Marty and Ed Douglass
Marty and Ed Douglass

Ed had enlisted in the Marines, serving two tours from 1967-72, during which he participated in numerous missions. His home base was North Carolina’s Camp Lejeune, where, years later, it would be revealed that toxic water had led to numerous illnesses. 

Ed’s symptoms began with tremors, and he was ultimately diagnosed with Parkinson’s disease in 2018. The Douglasses owned a small advertising agency and were active in the local chamber of commerce. The illness meant that Ed could no longer work, and Marty would need to care for him. They sold both the business and their beloved camper, which had been a part of their recreational and weekend life.

“I knew he was changing, but this diagnosis came out of the blue,” says Marty. “Once we understood that this was real, I could no longer be in denial, because with a degenerative disease, I had to start changing things and planning right away.”

This past August, Ed underwent surgery to relieve serious back pain and came out of the operation unable to walk. “His Parkinson’s disease had progressed to the point where he needed to use a walker, was partially incontinent and was developing cognitive issues. Prior to the surgery, I could leave the house for stretches of time during the day, but after the surgery, he required continuous care and rehabilitation,” says Marty.

Marty eventually acknowledged that she could no longer provide the care Ed required, and he is currently being cared for at a state veterans home. “It’s so hard to suddenly have to do everything,” she says. “Sometimes the role of caregiver comes on fast and other times it’s slow, but I’ve learned so much about myself on this journey.” 

Becoming a sudden caregiver

At first, says Jennie Beller, 59, from Indianapolis, she and her husband, Chuck, 70, seemed like an unlikely match. They met through mutual friends after previous marriages had ended for both. “I jokingly called Chuck my blue-collar baby because he worked on a freight dock at Roadway Express and I had a master’s degree,” says Jennie. “But we just clicked from the start, and he always made me laugh.”

Jennie and Chuck Beller
Jennie and Chuck Beller

Chuck served in Thailand in the Air Force during the Vietnam era. “I don’t know very much about his service because he didn’t like to discuss it,” says Jennie. 

After they married in 2000, Chuck went back to school to work on an associate degree. Jennie started law school at night while working full time for the state of Indiana as deputy general in the Consumer Protection Division, caring for people suffering after the home loan crisis.  

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One night in 2011, Jennie went to bed before Chuck. When their barking dog woke her up, she went downstairs and found Chuck struggling on the floor. He was rushed to the hospital and treated for a stroke.

“That’s where the nightmare started,” says Jennie. “One night I went to bed, and the next day everything was different.”

The stroke left Chuck paralyzed on his right side and unable to communicate with words. Jennie began the journey of navigating the care system, first putting him in an acute VA rehabilitation facility and then finding a spot in a nursing home where she felt he could make better progress. Through it all, she continued working, adding more stress to an already difficult situation.

For the first five years after Chuck’s stroke, Jennie tried to hold on to everything in what she refers to as “some vain attempt to deny the reality of the stroke.” She worked full time, took Chuck to day care and cared for him in the evening — without taking any time off for herself. “I’d be up in the middle of the night doing whatever else needed to be done,” she says.

“Chuck is fully cognizant, but there are times I have to jump through hoops to get him to understand things,” explains Jennie. “He is as smart as he ever was, and aware, but he is also left with anger issues and PTSD [post-traumatic stress disorder] from his service, as well as effects from Agent Orange.”

She felt isolated and put on weight. When doctors discovered she had an ovarian tumor the size of a grapefruit, she finally realized she needed to take time off to heal her mind and body.

“I experienced a lot of suicidal ideations,” says Jennie. “I didn’t want to kill myself, but I wanted to die. It’s hard when the man you love can be verbally abusive. Dealing with that anger is so hard. I feel like I missed my whole 50s, and so I’m a little sad about turning 60 this January.”

Jennie focused on herself, working with a personal trainer and losing 100 pounds. “It’s the best thing I’ve ever done,” she says.

Despite it all, Jennie continues to try to see the silver lining and calls being her husband’s caregiver a privilege and a gift. “There are moments we laugh and moments when I sob, and there is grace in all of this. You just have to look for it.”

The long road to a diagnosis

Melissa, 51, and Sean Johnson, 51, of Aberdeen, South Dakota, met in 1995 and were married within the year when it looked like he’d be sent to Bosnia. He served in the Gulf War, then in the Army Reserves, and in 2005, he was deployed to Iraq, where he was injured by a mortar blast. He was “out” for a few minutes before getting up and walking away from the scene. The closed head injury he suffered at the time would take years to diagnose.

Melissa Johnson
Melissa and Sean Johnson

As a reservist spouse, Melissa didn’t have an extensive military network, and at the time, very little was known about traumatic brain injury (TBI) and PTSD. “I felt like we were the only ones dealing with the injury,” she says.

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When Sean first came back from Iraq for R&R after being injured, he experienced issues sleeping and had frequent headaches, something he and Melissa attributed to his having traveled across the globe. “He never even mentioned the bomb blast to me,” she recalls.

Finally, after recurring abdominal infections, Sean was sent home for good, though none of his doctors could figure out what was wrong with him. At Walter Reed Hospital, he was diagnosed with medically unexplained symptoms (MUS) — headaches, fatigue and chronic infections. “At the time we had three teenagers, and Sean had been deployed for nearly two years,” recalls Melissa. “He came home with anger and cognitive issues and then lost his job at the fire department. He failed the course he needed to take, where he had once been an instructor.”

In 2008, Sean’s TBI was finally diagnosed. Despite all the red flags, Melissa — like so many others in the early years of the war — didn’t know anything about the aftereffects of a brain injury.

With monthly counseling since 2010, Melissa and Sean have learned how to cope with post-injury life and emotions. Their children have struggled, too, with addiction issues and even a few suicide attempts, compounding Melissa’s burden and her private grief.

“I am in this for the long haul,” she says. “But one of the things I have struggled the most with is the loss of my partner. His TBI means that there are times he doesn’t understand what is happening with the kids and why we should be concerned.” 

His brain injury also means that in times of stress he can simply shut down and be absent. “I feel like I’m dealing with everything on my own, and that makes me very sad at times,” says Melissa.

‘Focus on your beautiful life’

Mary-Ella Majetich, 53, Ponte Vedra, Florida, is a quality management nurse in the prosthetics department in the North Florida/South Georgia VA System, proudly serving as the only known nurse in the nation in this specific role. She was taking nursing courses when she first met Jerry Majetich, now 52. They reconnected and became friends in 2012. At the time, she was dealing with the aftermath of a divorce and he had sworn off dating.

Mary Ella Majetich
Mary-Ella Majetich and her husband Jerry
Mary-Ella Majetich

Jerry was injured before they met. In October 2005, when he was in Iraq as a psy-op tactical team leader gathering intelligence on the ground, an IED exploded under his vehicle and it caught fire, burning 37 percent of his body and requiring his right hand to be amputated. His face was also badly burned, and he lost his ears and nose. This past September, Jerry completed his 83rd surgery related to the incident.

Jerry retired from the military and returned to work in the financial arena, working with other veterans as he and Mary-Ella began to get more serious. “I didn’t realize how bad his brain injury was until we were married,” she says. “He was putting out so much energy just trying to get through the day, and we were in the doctor’s office at least once a week.” Mary-Ella decided to take a nursing position with the VA so that she could learn more about how the system works.

“The struggle just keeps changing,” she says, noting that Jerry suffers ongoing vision and skin-care issues due to the burns. “You would think after the injury it’s going to get better, but it’s not. There are so many things to be on top of, so many medical issues, it’s hard to tease out what is normal aging versus the trauma and the injury. Jerry is having issues with his short-term memory. Sometimes we will have the same conversation 25 times. People think they are being helpful trying to minimize that, but I see the slow decline, and I know it scares him.”

There are many days when Mary-Ella feels as if she is at the end of her rope, but she’s learned not to be afraid to reach out to others. “I can’t do everything,” she says. “You have to give in to that and realize that everyone needs a battery recharge. When I met Jerry, I knew we’d have bumps in the road, but I had no idea. You just have to focus on your beautiful life. That’s the best thing all of us can do.”

Tips from Veteran Caregivers

Set realistic expectations about your abilities/endurance. Create a contingency plan and expect there to be disruptions. 

Choose to be with positive people who express gratitude.

You may have a different relationship with your spouse after an injury or illness, but there are so many other outlets where you can find joy, such as friends, children and grandchildren.

Once you know the progression of a disease or illness, start planning financial arrangements. Set up legal access or representation for your loved one and position it as a mutual step so that each person can legally take care of the other.  

Take care of yourself first. You can do that symbolically through small acts like taking your own medication or vitamins first in the morning.

Even though you aren’t the one who was physically affected, honor the fact that your life is altered. 

Give in to the bad days, because they allow you to understand what a good day feels like.

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