Sharing the Costs of War – Military Caregivers

They are wives, husbands, mothers and fathers, good neighbors who check in, best friends who help. They sacrifice their time, their work and even their health to provide a multi-billion dollar service to America, often without any recognition.

These are caregivers of active and retired military: not paid professionals, but loved ones struggling with panic attacks, traumatic brain injuries, or just the day-to-day bureaucracy of American healthcare. RAND's research in recent years has helped shed light on their stories:

Who they are, what they do and, most importantly, what they need to succeed. These studies have highlighted the enormous sacrifices millions of military nurses make every day and the shortcomings of the support programs designed to help them. It has helped define military nurses as their own public servants, America's “unsung heroes.”

A story of great need left untold

Elizabeth Dole spent most of 2010 in her husband Bob's hospital bed, recovering from a long illness at Walter Reed National Military Medical Center. Walking the halls, the former senator realized that behind every door was “a silent, untold story of deep distress,” a treatment crisis that went almost entirely unnoticed.

He asked RAND to investigate. At the time, the United States had been at war in Iraq and Afghanistan for nearly a decade. Yet few studies had focused on the people who care for deployed soldiers when they return home. The best RAND could find was 275,000, or more than a million.

This was the starting point for the most comprehensive study of military caregivers ever conducted. RAND researchers surveyed thousands of military households and interviewed dozens of individual caregivers in one-on-one focus groups. They scoured resource guides, websites, and word-of-mouth information to identify all known support programs available to caregivers and their dependents.

They concluded that 1.1 million people offered support to veterans in Iraq and Afghanistan after the Sept. 11, 2001, war. In addition, 4.4 million people cared for veterans from previous eras. If they were all professional caregivers, they would be worth about $14 billion a year.

The people who cared for aging veterans were very similar to other caregivers in the civilian world. In most cases they were older adults who were helping a family member with a physical disability due to age or illness, and who had support networks in place to assist them. After September 11, 2001, caregivers were very different.

1.1 million people support veterans of the Iraq and Afghanistan wars since September 11, 2001.

After 9/11, caregivers are younger and have less support

They are primarily spouses (33%), family members (25%), or friends and neighbors (23%); about 40% are men. More than a third were under 31 years of age. Most of them were employed and reported having been absent from work for caregiving reasons for an average of 3.5 working days per month. Almost half of the respondents reported having no support network. Nearly 40% met clinical criteria for major depression.

The needs of caregivers also varied. Nearly two-thirds suffered from mental health problems, such as post-traumatic stress disorder (PTSD), or substance abuse. One of the most common tasks of their caregivers was to help them cope with stressful situations or other triggers.

However, the researchers found that, too often, programs designed to help military caregivers were not tailored to their new situation. Many still focused on older veterans with physical illnesses such as dementia, rather than younger Iraq or Afghanistan veterans with depression or substance abuse. Other programs were only open to service members or immediate family members of veterans, not friends or neighbors.

The researchers found that almost none of the programs offered financial support to caregivers or helped them access health services. Only a few programs offered caregivers the time off they needed to get away from their responsibilities.

The researchers saw even more cause for concern when they looked into the future. They estimated that in little more than a decade, a significant proportion of caregivers will simply be too old to fulfill their duties. Marriages will break up, friends and neighbors will move away. Moreover, many potentially helpful support programs are run by relatively young nonprofits that are not guaranteed funding as long as they need it.

The RAND study sheds light on caregivers

RAND published its key findings in 2014. The impact was immediate. Former Senator Dole described the report as a “clarifying study.” At a White House press conference, she unveiled a coalition of nonprofits, political leaders and others committed to supporting and empowering military nurses.

Since then, the Elizabeth Dole Foundation has partnered with Public Counsel and other legal groups to offer free legal and financial services to caregivers planning for their future. It has partnered with the American Chamber of Commerce Foundation to expand employment and job placement services for caregivers. It has also rallied hundreds of caregivers to lobby Congress and states to make support programs more accessible.

Former Senator Elizabeth Dole described the RAND report as a “clarification.”

The RAND study “has been instrumental in clarifying the number and characteristics of military and veteran caregivers,” Terri Tanielian, a behavioral scientist, told the U.S. Senate Committee on Aging earlier this year. But much work remains to be done.

Tanielian, director of RAND's Heroes in Disguise study and herself the daughter of a veteran and a former caregiver, recently released a 10-point plan to help military caregivers. She calls for more research on how support programs work, whether caregiving needs affect each person-including children-differently, and how caregiving needs change over time.

He was a keynote speaker at last year's Invictus Games (International Olympics for Wounded Warriors and Veteran Athletes). He attended the opening ceremony with his wife, who was assisting her triple amputee husband.

“The way she made sure he was OK and seeing his encouragement was inspiring,” he says. “You see these caregivers, you meet them, and they're not data, they're not statistics. “I'm always inspired by what they do every day and the sacrifices they make. And I always hear about the challenges they face. We can make their lives easier if we focus on improving programs and practices based on sound research.”

Who are the Caregivers of Military?

“I'm still overwhelmed”

Jessica Allen recently found herself in the middle of some parents' frustration when a flight change disrupted their children's travel plans. One parent approached her, “Why are you being so quiet? She shrugged. “My husband survived a 40-kilogram bomb,” she said. “That's nothing.”

Her husband Chaz, a soldier in the 101st Airborne Division, came home from Afghanistan with no legs and an elbow fused to his right arm. His recovery required months of treatment at Walter Reed National Military Medical Center near Washington, D.C.; Jessica and her two daughters lived in Tennessee.

Every two weeks, she would leave the girls with her family, fly to Washington, spend a week with them and then fly home to pick them up in time for school. His youngest daughter was 5 years old at the time, and even now she recounts her memories of when her father had legs and when he didn't.

In the midst of all this, Jessica, a well-known financial advisor, continued to work; she had just opened her own office. Now Chaz can drive to physical therapy and take his youngest daughter to school. He has a fancy lawn mower to cut his 10-acre lawn.

“It still surprises me, all the time,” he says. “I'm human. There are days when you think, oh my God, one more thing and I'll break down. You have a normal life, which is stressful, and then you have parenthood, which is very stressful, and then you have a spouse who is very dependent on you, so there's another stressor.”

“That's the definition of love”

Ask Brian Vines when he first realized the extent of his caregiving role, and he'll tell you about the afternoon he heard a click in his bedroom. He and his wife Natalie were in the military: both were serving in Mosul, Iraq, in 2009 when Natalie suffered a head injury. He met her at the base hospital; when he and the doctors asked her if she remembered the names of the two Boston Iterians, Libby and Freda, she just shook her head.

Brian, who continues to suffer from severe migraines, cognitive impairment, balance problems and severe post-traumatic stress disorder, has learned to plan his day the night before, map out routes and organize his clothing to avoid surprises that might upset it. At the restaurant, she knows to always ask to sit at the end of the table, away from the noise, and to have a clear view of the door so Natalie can see who is coming in.

But it wasn't until that evening, when he heard the clicks, that he really understood what he was up against as Natalie's caregiver. He rushed into the room and found Natalie convulsing on the floor. He bit his tongue. The rumbling was her watch crashing against the bedroom mirror.

“I realized this could be the rest of my life,” she said. “But you know, being a caregiver isn't necessarily a big step up from being a husband. If you love your spouse, you do these things for them. I never thought of it as a label: ‘You're a caregiver.' It's when you love someone so much that you put their needs before your own. That's the definition of love.”

“It's like pushing a button”

A phone call woke Roxana Delgado. It was 3:30 in the morning. “Are you driving, can you talk?” the caller asked. And then, “I'm afraid I have to tell you: ……” Her husband, Victor, was driving a convoy in Iraq when his armored vehicle was hit by an explosive device. He later said it was as if someone had hit him over the head with a baseball bat and then sucked all the oxygen out of his air.

“Like a switch had been flipped,” Roxana says now. “Life changed completely that day.” Victor couldn't talk without screaming, couldn't put a fork in his mouth without shaking, couldn't tie his shoes. Roxana was working full time as a health researcher and had just started her PhD.

She would get up early, take Roxana to rehab, go to work, pick her up and take her home, go study, come home to put her to bed and then study. “Didn't I tell you my days don't have 24 hours?” she says.

She says she was able to do this because of the incredible support she received: classmates who understood the demands she had at home and teachers who allowed her to participate in classes via Skype.

He also praises Victoria, who gave him a card promising that he would fall in love with the “new me” and then worked long hours in rehab to make it happen. He recently passed his driving test. “When the community supports caregivers and is able to meet their needs, we can excel,” she says. “I am an example of that. Today, eight years later, our lives couldn't be better.”

She wrote her dissertation on the experiences of service members who have suffered a brain injury. Her research now focuses on caregivers: their health, their well-being and what they need to cope.

“They can't do it alone…”

Emery Popoloski knew her husband Charlie had survived a mortar shell explosion during two deployments to Iraq while serving in the Army. But he seemed unharmed when he stepped off the plane in 2012, ready to return home. Only later did he begin to notice changes.

He was agitated and angry, and sometimes had trouble remembering things. One night he collapsed in the living room and she had to call a neighbor for help. He was diagnosed with head trauma, post-traumatic stress disorder and a seizure disorder, which temporarily prevented him from driving.

Emery became her unofficial case manager, driving her to doctor's appointments, making long-term life insurance and financial plans, and arguing all too often with insurance company callers about policy details. During this time she also worked as a criminal defense attorney and raised two young children. She was not even 30 years old.

Her vision of the future had to be modified to reflect the new reality. She calls it the “ambiguous loss” of caring for an injured loved one. “It's the loss of hopes and plans,” she says.” He said. “It's the loss of what you hoped for.” “It's the loss of what you hoped for.” Since then, he and Charlie have adjusted to their new life. They've reached out to their mother for help.

Since then, Emery has worked with the Elizabeth Dole Foundation to coordinate a fellowship program that brings military nurses together to advocate, mentor and represent the foundation. She is pursuing a master's degree in public administration. “We've had tremendous support,” she says. “I've seen other nurses who have no support and are falling apart. They can't manage on their own.”