Karla Seijas holds this memory close. Her husband had just come home from Iraq. Life was good. One day, they turned their car south and followed California's Highway 1 wherever it would take them. They dipped their toes in the surf at Pismo Beach and stuck wads of chewing gum to Bubblegum Alley in San Luis Obispo.
“There was no sense of time,” she says now. “No worry or hurry. As long as we were together, that was all that mattered.” It was one last moment of peace before the toll of war started to become apparent. “There are no more trips without an itinerary,” she says. “No more carefree days without the worry of time.”
Seijas is now her husband's caregiver—his planner, his champion, his guard against big crowds or unfamiliar places that might trigger his post-traumatic stress disorder. There are millions of people like her, a recent RAND study found: parents caring for injured children, children caring for aging parents, neighbors checking in on veterans whose wars were fought long ago. They provide services worth billions of dollars every year, often at tremendous financial and emotional costs to themselves. And they rarely get the recognition or support they deserve.
Karla Seijas
Photo courtesy of Karla Seijas
“I'm dedicated. I will never give up,” Seijas said. “As much as my husband supports me, I try to support him. But I feel like sometimes I've put myself on the back burner. I'm very good at hiding behind a smile—'Everything is okay!'—but inside I know it's not.”
RAND published a report ten years ago that awakened America to the sacrifices borne by military and veteran caregivers. It provided the first detailed account of the challenges they face—the emotional strain, the lives disrupted and careers put on hold, the isolation. It called them “hidden heroes.” The Elizabeth Dole Foundation sponsored that report and has used it ever since as a blueprint to fight for new laws, better policies, and more programs to support caregivers.
The foundation decided it was time to take another look. That first study “was transformative, to say the least,” CEO Steve Schwab said. “It has changed so many parts of government and society. It's improved conditions for military and veteran caregivers and their families. As we look ahead to the next ten years we wanted to be driven by that same kind of evidence.”
This time, though, RAND didn't just ask people if they were caregivers. It asked if they had helped a loved one get dressed or take a bath; if they had treated an injury or helped someone remember their medicine; if they had helped a friend or family member live with depression or PTSD. Researchers especially wanted to capture the experiences of people like Seijas who help with mental health conditions. Most previous studies have focused on physical caregiving tasks.
Their approach revealed that the number of people doing the work of caregiving has been undercounted for years. RAND estimated as many as 105 million Americans are providing care for someone, roughly 40 percent of the adult population. Many don't see themselves as caregivers at all. They're just doing what friends and family members do.
RAND estimated as many as 105 million Americans are providing care for someone, roughly 40 percent of the adult population.
But what they do would be worth at least $119 billion a year if they made minimum wage for the hours they spend caregiving, RAND found. If they were paid as nursing assistants instead, it would be worth more than $200 billion a year. And if they were paid like registered nurses for giving injections, replacing catheters, administering oxygen, then the work they do as caregivers would be worth nearly half a trillion dollars every year.
“This is a group of people who represent close to half of the adult population in America, and too often they're invisible,” said Alexandra Drane, a member of the RAND Social and Economic Policy Advisory Board, who advocates for unpaid caregivers through her organization, ARCHANGELS. “Almost no one is paying attention to them. But they are the backbone of our economy and our health care system. They are the backbone of our communities.”
More than 14 million of those caregivers are helping a service member or veteran. RAND divided them into two groups. Those caring for veterans older than 60 looked very similar to those caring for older people in general. They were mostly wives or adult children caring for a husband or father managing a chronic condition like diabetes.
Those caring for younger service members and veterans—many of whom had served during the wars in Iraq or Afghanistan—were much different.
Who are America’s military or veteran caregivers?
They, too, were dealing with a high share of chronic conditions. But nearly two-thirds of them were also helping a loved one manage a mental health condition or a substance use disorder. More than one in five were helping someone cope with the effects of a traumatic brain injury. Their duties went well beyond dispensing medicine or helping someone up the stairs. They were confronting PTSD triggers, anxiety, memory loss—and, often, huge amounts of paperwork to get their loved ones the care they needed.
And they were struggling. More than 40 percent of these caregivers showed signs of depression. More than 20 percent said they had thought about suicide in the past year. One in three said they had gone without the mental health care they needed—usually because they just didn't have time. Most were struggling to pay their bills every month, and 40 percent said they had trouble affording food.
In part, that was because they were literally paying to be caregivers. The researchers estimated that caregivers of all ages, military and civilian, spend an average of $8,500 a year on out-of-pocket caregiving expenses. They also forgo around $4,500 a year in income by taking time off work or letting opportunities for advancement slip by.
“That makes the value of what they're doing so much more important to consider,” said Rajeev Ramchand, a senior behavioral scientist at RAND and codirector of the RAND Epstein Family Veterans Policy Research Institute. “This is not just emotionally taxing. It's financially taxing. That came out of our survey as something that was really, really concerning.”
Karla Seijas' husband has no physical wounds that require care. He doesn't need help driving to his appointments or filling out paperwork. He deployed to Iraq twice as a combat medic, and came home haunted by the faces of American and Iraqi service members he had tried to save. He told her about trying to get to the injured as bullets zipped past him.
He retired after 20 years in the Army, with the rank of sergeant first class and a diagnosis of PTSD. The care that Seijas provides is more about managing his PTSD, avoiding unfamiliar situations that might trigger his anxiety—and always planning ahead to make sure there are no surprises.
“It's just a learning process, day by day,” she said. “He's my best friend, and to see the changes in him has been hard. We try to look at the positives and not let a diagnosis or a war define us. We learn to live and persevere.”
America's caregivers need better access to mental health care, RAND's study concluded. They need more financial support, including compensation for the work they do as caregivers. They need programs for their children, who often share caregiving duties and have unmet mental health needs themselves. They need employers willing to work with their schedules. And they need doctors and other health care providers who value them and include them as the partners in care they can be.
America's caregivers need better access to mental health care. They need more financial support, including compensation for the work they do as caregivers.
The Elizabeth Dole Foundation has already begun to implement RAND's findings and recommendations, to further improve the lives of military and veteran caregivers. Its goal, Schwab said, is to “create an impact in every corner of this country.”
“Caregiving is going to impact almost every American family in some way, now or in the future,” he said. “This study validates how essential—foundational—caregivers are to the health, wellness, and recovery of our veterans. Their success is our success. Their success is that veteran's success.”
Karla Seijas sometimes thinks back to that road trip down the coast, when life seemed so easy. She knows her husband can't just jump in the car anymore. He can't take their two young children to Disneyland, or sit through a movie in the dark. That's all been part of the learning experience. They go camping instead.
She's working on her Ph.D., with a focus on how public policy can better serve American veterans and their families. She wrote and helped pass a law in California last year that expands educational benefits for children of injured veterans. Her husband is working on his master's degree.
She will be on the front lines as the Elizabeth Dole Foundation works to translate RAND's recommendations into law and policy. She was recently named a Dole Caregiver Fellow, part of a community of advocates in every state working to improve the lives of fellow caregivers. “It's exciting to know that I'm not alone,” she said. “I'm not alone as a caregiver, and I'm not alone in trying to make a difference for the next generation.”
