They are wives, husbands, mothers and fathers, a good neighbor checking in, a best friend helping out. They sacrifice their time, their jobs, even their health to provide a service worth billions of dollars to the United States, often with no recognition whatsoever.
They are caregivers to active or retired military service members — not paid professionals, but loved ones thrown into battle against panic attacks, traumatic brain injuries, or just the everyday bureaucracies of American health care.
RAND research has helped bring their stories to light in recent years — who they are, what they do, and above all, what they need to succeed. That research has revealed the enormous sacrifices that millions of military caregivers make every day, as well as the gaps in support programs meant to help them.
It has helped define military caregivers as public servants in their own right, America’s “hidden heroes.”
An Untold Story of Profound Need
Elizabeth Dole spent most of 2010 at the hospital bedside of her husband, Bob, as he recovered from a long illness at Walter Reed National Military Medical Center. As she walked the halls, the former senator came to realize that a “quiet, untold story of profound need” was playing out behind every door — a caregiving crisis that had gone almost entirely unnoticed.
She asked RAND to investigate. By then, the United States had been fighting wars in Iraq and Afghanistan for the better part of a decade. Yet few studies had looked at the people caring for service members when they came home. The best data RAND could find suggested there might be 275,000 of them — or there could be well more than a million.
That was the starting point for what became the most comprehensive study of military caregivers ever undertaken. RAND researchers surveyed thousands of military households and interviewed dozens of individual caregivers in face-to-face focus groups. They worked through resource guides, websites, and word of mouth to identify every known support program available to caregivers and their care recipients.
1.1 million people provide support to veterans of the post–9/11 wars in Iraq and Afghanistan.
They concluded that 1.1 million people were providing support to veterans of the post–9/11 wars in Iraq and Afghanistan. Another 4.4 million people were caring for veterans of earlier eras. The value of that, if they were all professional caregivers, would approach $14 billion a year.
Those caring for older veterans looked in many ways like other caregivers in the civilian world. They were most likely to be older adult children helping a parent with the physical disabilities of age or illness, with well-established networks of support to help them.
The post–9/11 caregivers were much different.
Post–9/11 Caregivers Are Young and Have Less Support
They were most often spouses (33 percent), parents (25 percent), or unrelated friends and neighbors (23 percent); around 40 percent of them were men. More than one-third of them had not yet turned 31.
Most were employed, and they reported missing an average of 3.5 days of work every month because of their caregiving duties. Nearly half said they had no support network.
Nearly 40 percent met the clinical criteria for major depression.
The needs of their care recipients were different as well. Nearly two-thirds had some kind of mental-health disorder, such as post-traumatic stress disorder (PTSD), or were struggling with substance abuse. One of the most common tasks their caregivers performed was helping them cope with stressful situations or other triggers.
Yet all too often, the programs meant to help military caregivers had not adjusted to those new realities, the researchers found. Many were still focused on older veterans with physical illnesses such as dementia, not younger veterans of Iraq or Afghanistan haunted by depression or substance-use disorders. Other programs were only open to immediate family members of service members or veterans, not friends or neighbors.
Almost none of the programs provided financial support to caregivers, or helped connect them with health care, the researchers found. And only a handful provided respite care, to allow caregivers a much-needed break from their responsibilities.
The researchers saw even more cause for concern when they looked to the future. In little more than a decade, they estimated, significant numbers of caregiving parents will simply become too old to carry on their duties. Marriages will fail; friends and neighbors will move on. And many of the support programs that could help are run by relatively young nonprofits, with no guarantee their funding will last as long as the need.
RAND Research Shines a Light on Caregivers
RAND published its major findings in 2014. The impact was immediate.
Former Senator Dole described the report as a “clarion call.” At a White House press conference, she introduced a coalition of nonprofit groups, political leaders, and others who had committed to support and empower military caregivers.
Former Senator Elizabeth Dole described the RAND report as a “clarion call.”
The Elizabeth Dole Foundation has since partnered with Public Counsel and other legal groups to provide free legal and financial services to caregivers planning for the future. It has worked with the U.S. Chamber of Commerce Foundation to expand employment and workplace services for caregivers. And it has rallied hundreds of caregivers to lobby Congress and the states for greater access to support programs.
RAND’s research has “been critical in shining a light on the number and characteristics of military and veteran caregivers,” senior behavioral scientist Terri Tanielian told the U.S. Senate’s Special Committee on Aging earlier this year. But much more work remains.
Tanielian, the leader of RAND’s “Hidden Heroes” research and, as the daughter of a veteran, a former caregiver herself, recently released a ten-point blueprint to further help military caregivers. It calls for more research into how well support programs are working, whether the demands of caregiving affect different people — such as children — differently, and how caregiving needs change over time.
She was a featured speaker at last year’s Invictus Games, the international Olympics for wounded military and veteran athletes. She attended the opening ceremonies alongside a woman who was helping her husband, a triple amputee.
“Watching her make sure he was OK, just seeing their spirit, was inspiring,” she says. “You see these caregivers, you meet them, and they’re not a data point, not a statistic.
“I continue to be inspired by what they do on a day-to-day basis, the sacrifices they’ve made. And I continue to hear about the challenges they face. We can make their lives easier if we focus on improving programs and policies based on sound research.”
— Doug Irving
Who Are Military Caregivers?
“I still get overwhelmed.”
Jessica Allen was standing recently in a crowd of parental frustration, after a flight change threw off the plans of their traveling children. A father turned to her: Why are you so calm?
She shrugged. “My husband survived a 40-pound bomb,” she told him. “This is nothing.”
Her husband, Chaz, a soldier with the 101st Airborne, came home from Afghanistan with no legs and his right arm fused at the elbow. His recovery would keep him for months at Walter Reed National Military Medical Center near Washington, D.C.; Jessica and their two daughters were living in Tennessee.
Every other week, she would leave the girls with family, fly to Washington, spend a week with him, and then fly back home in time to pick them up from school. Their youngest daughter was 5 at the time; even now, she divides her memory between when her dad had legs, and when he didn’t.
Through it all, Jessica, an accredited financial counselor, kept working; she just opened her own brick-and-mortar office. Chaz can now drive himself to his physical therapy appointments and takes their youngest daughter to school. He has a fancy riding mower so he can cut their 10 acres of grass.
“I still get overwhelmed all the time,” she says. “I’m human. You’ll have days when you’re just like, oh my gosh, one more thing and I’m just going to break. You have regular life, which is stressful, and then you have life as a parent, which is very stressful, and then you have a spouse who is heavily dependent on you, and so there’s another stressor.”
“That’s the definition of love.”
Ask Brian Vines when he first realized the enormity of his role as a caregiver, and he’ll tell you about the afternoon he heard a clicking sound coming from his bedroom.
He and his wife, Natalie, were both in the Army — both serving in Mosul, Iraq, in 2009 when she suffered a head injury. He met her at the base hospital; when he and the doctors asked if she could remember the names of their two Boston terriers, Libby and Freda, she just shook her head.
She still has severe migraine headaches, a cognitive disorder, balance issues, and severe PTSD. Brian has learned to plan out every day the night before — mapping routes, laying out clothes — to avoid any surprises that might distress her. At restaurants, he knows to always ask for a table at the back, away from noise, with a clear view of the door so Natalie can see anybody coming in.
But it wasn’t until that afternoon when he heard the clicking sound that he really understood what he was up against as her caregiver. He rushed into the bedroom to find her on the floor, convulsing with a seizure. She had bit her tongue. The clicking sound was her watch hitting a bedroom mirror.
“I realized it may be like this for the rest of her life,” he says. “But you know, being a caregiver is not necessarily a big stretch from being a husband. I mean, if you love your spouse, you’re going to do those things for them. I never thought of it as a label — ‘you’re a caregiver.’
“It’s that you love someone so much that you put their needs before your own. If anything, that is the definition of love.”
“It’s like a switch flipped.”
The phone call jolted Roxana Delgado awake. It was 4:30 in the morning. “Are you driving? Are you in a position to talk?” the caller asked. And then: “I regret to inform you….”
Her husband, Victor, had been riding in a convoy in Iraq when an explosive projectile hit his armored truck. He later said it felt like someone swung a baseball bat into the back of his head, and then sucked all the oxygen out of the air. “It’s like a switch flipped,” Roxana says now. “Life just changed completely that day.”
Victor couldn’t talk without stuttering, couldn’t raise a fork to his mouth without shaking, couldn’t tie his own shoes. Roxana was working full-time as a health scientist and had just started a Ph.D. program. She would wake up early, take him to rehab, go to work, pick him up and get him home, go to class, come back home to get him in bed, and then study. “I didn’t tell you that my days were not 24 hours?” she says.
She was able to do it, she says, because of the extraordinary support she received: Colleagues who understood she had demands at home, professors who let her attend class by Skype. She also credits Victor, who gave her a card promising to make her fall in love with “the new me,” and then put in long hours of work at rehab to make good on it. He recently passed his driving test.
“When you have a community that supports caregivers and is able to accommodate their needs, we can be extremely successful,” she says. “I’m an example of that. Today, eight years later, our life couldn’t be better.”
She wrote her dissertation on the experiences of service members with brain injuries. Her research focus now is on caregivers: their health, well-being, and what they need to succeed.
“They just can’t do it alone.”
Emery Popoloski knew her husband, Charlie, had survived a mortar blast during his two deployments to Iraq with the Army. But he seemed unharmed as he stepped off the plane in 2012, ready for home.
It was only later that she started noticing changes.
He was anxious and angry, and sometimes had trouble remembering things. One evening, he collapsed in the living room, and she had to get a neighbor to help. He was diagnosed with a traumatic brain injury, PTSD, and a seizure disorder that temporarily cost him his driver’s license.
Emery became his unofficial case manager, shuttling him to medical appointments, setting up life insurance and long-term financial plans, and all too often arguing with some insurance call-taker about coverage details. At the time, she was also working as a criminal-law paralegal and raising two young children. She hadn’t even turned 30.
Her ideas about the future had to change to accommodate her new reality. She calls it the “ambiguous loss” of caring for a wounded loved one: “It’s the hopes and plans you lost,” she says. “It’s the loss of what you had expected.”
She and Charlie have adapted since then to what she describes as her new life. They moved closer to his mother so she could help. Emery has since worked with the Elizabeth Dole Foundation to coordinate a fellows program that brings together military caregivers to advocate, advise, and represent the foundation. She’s pursuing her master’s degree in public administration.
“We’ve had an insane amount of support,” she says. “I’ve seen other caregivers with no support, and they just crash and burn. They just can’t do it alone.”
This originally appeared on The RAND Blog on October 30, 2017.
