Upside Down Lives

By the time Debbie Schulz got help, she had been her wounded son’s full-time caregiver for more than six years. She had lost her husband, her teaching career and her retirement. She lay awake at night wondering how she was going to get health insurance.

“That blast changed the fabric of our family,” Schulz says of the roadside bomb that inflicted a traumatic brain injury (TBI), partial paralysis and vision loss on 20-year-old Steven Schulz during his second tour with the Marines in Iraq. “It’s that sort of constant having to rewrite your life and what you are doing.”

Yet Schulz is fortunate among caregivers in some respects. Last year, she started receiving a stipend and health insurance under the Caregivers and Veterans Omnibus Health Services Act of 2010, the first federal program to provide assistance directly to families caring for veterans of the wars in Iraq and Afghanistan. “As everybody applies and settles into the program, we’re realizing how much we needed it,” Schulz says. “And we wonder how we ever got by without it.”

Schulz and other caregivers also hope that the program, championed by The American Legion and other veterans service organizations, will evolve to meet the realities of caring for injured veterans. High on the list: compensation. Caregivers receive a stipend for a maximum 40-hour workweek – far short of the around-the-clock care many provide, particularly to veterans with brain injuries. “It’s truly 24/7, even when they look fairly independent,” Schulz says.

Respite care and counseling provided by the legislation are also inadequate and difficult for families to access. In addition, many caregivers of post-9/11 veterans have no idea the program is available.

“I’m still hearing from people who don’t know about it,” says Karen Francis, an Army wife and military family advocate. “I can’t imagine it would be that hard to do phone outreach.”

New Realities. Sarah Wade helped start the drive for caregiver relief in 2005, about a year after her husband, Ted, was blown out of the back of a Humvee in Iraq and suffered TBI, a broken leg and amputation of his right arm. Then-Sen. Hillary Clinton introduced the Heroes at Home Act in 2006, but the measure died.

Wade, military families and VSOs kept up the pressure, and the Senate went to work on a new bill, says Ian de Planque, the Legion’s deputy director of legislative affairs. But VA opposed caregiver legislation – the agency insisted its mission was to help veterans, not assist families – and the program was painfully slow to launch. The agency didn’t start accepting applications until May 2011, a year after the act passed.

Despite this rocky start, the program is making a difference. “There’s a system in place, there are families who are getting benefits, and it’s doing what it’s supposed to be doing,” de Planque says.

The result, as Sen. Dick Durbin, D-Ill., noted in a speech marking the anniversary of the act, is that veterans “are home with someone they love at a fraction of the cost of institutional care.”

Today, Schulz and Wade are among no fewer than 5,150 caregivers receiving stipends through the post-9/11 veterans caregiver program – 1,000 more than VA had anticipated enrolling by 2015. They receive, on average, between $600 and $2,200 a month, based on care needs and local wage rates for home health aides in their area. About 1,200 caregivers also receive health insurance through the program.

The burden on these parents, spouses and siblings is considerable. Many are exhausted, overwhelmed and face decades in roles they never prepared for. “It’s a drastic shift to go from coping with being apart to being together 24/7,” says Wade, whose husband served with the Army in Afghanistan and Iraq. “And it’s not like I was eased into that transition.”

Even families with professional caregiving or mental health treatment experience are surprised by the demands. Schulz was a psychiatric social worker for the state of Texas for nine years before becoming a special-education teacher in a Houston suburb. “Both of these careers prepared me for some of the realities of traumatic brain injury,” Schulz says, “but not the realities of becoming a caregiver.” Her son required help with tasks as simple as getting dressed and brushing his teeth. “It was step by step,” she says. “I was exhausted those first six years.”

Schulz took a temporary leave from her teaching job after her son was wounded in April 2005, thinking she’d go back to work the following fall. She extended her leave twice – once for six months and then for a year – before she realized that she would never be able to return to the classroom. “Dealing with Steven was a lot like dealing with my class,” she says. “I know I couldn’t do that during the day and come home at night and deal with Steven’s needs.”

In addition, Steven couldn’t be left by himself. And Schulz didn’t have the resources to hire someone to help him, or the confidence that she could find someone who would take good care of her son. Then her husband died unexpectedly in March 2011.

Elements of Schulz’s dilemma are common to families helping injured veterans.

“People are really struggling with their role as caregivers,” says Joan Griffin, a researcher with the Minneapolis VA Health Care System and an associate professor of medicine at the University of Minnesota Medical School. She led a 2009 study of caregivers. “It’s incredibly hard.”

Post-9/11 caregivers deal with far different issues than those helping veterans from earlier conflicts, who are more likely to suffer from cancer or chronic diseases than combat-related injuries, Griffin says. Because they are helping Iraq and Afghanistan veterans, they are typically younger and face a lifetime of caregiving. They often take care of veterans with multiple injuries – such as TBI, amputations and other wounds – who might not have survived earlier wars. Because of their age, post-9/11 caregivers are unlikely to have peers also taking care of a veteran, leaving them isolated and invisible.

The strain goes both ways. “I think the level of stress is pretty great for veterans and caregivers,” Griffin says. “A lot of times with brain injuries, veterans can remember what they were like before the brain injury. The caregivers mourn who they’ve lost and the things they used to do, just as the veterans mourn who they used to be.”

“You are asking some very young people to take on something they never thought they would have to take on,” Francis adds. “You reach the point you want your own life too.”

Lonely Road. Count 32-year-old Lee Karcher among the frustrated. Her husband, Mark, came home from his third deployment with TBI, PTSD, and knee, back and shoulder injuries. He suffers from migraine headaches, a hernia, acid reflux, sleeplessness and depression. He has not been able to find a job since he was honorably discharged from the Army and returned to southern Oregon in September 2010.

“I sent him to war a whole, healthy strong man and they returned a broken shell of a man to me,” says Karcher, who cares for her husband and six children ages 6 to 13. “It can be a very lonely road. It’s like having another child – a disturbed child, on top of that.”

Negotiating the veterans benefits system has been arduous and confusing. “We’ve been told something different at four different VAs,” Karcher says. “Eventually you get to the right person, but we spend several hours a week chasing information.”

Karcher learned about the caregiver program from Mark’s VA psychiatrist. Lee, who was designated his official caregiver in August 2011, receives a monthly stipend of about $1,200 – the equivalent of about $8 an hour for a 40-hour work week. But that extra income cost the Karchers most of their food stamp benefits.

That’s an unfair trade, she says. “It’s like, ‘Thanks for your service to our country. Now get out of here.’”

High co-pays also prevent Karcher, who has Crohn’s disease, from using the health insurance she receives through the caregiver program. And she is too busy homeschooling children with special dietary needs, and getting her husband to medical appointments in four different cities, to take advantage of the caregiver respite or counseling programs.

Assuming the role of single parent, however, has been the hardest part of this upside-down life. “I need a second adult in the house to be an example, to be a disciplinarian, to give kisses and a hug, to be an extra set of hands,” Karcher says. “To have that go downhill is, as a mother, really hard to watch.”
Still, Karcher remains committed. “At times, things feel really bleak,” she says. “But I am a faith-based person. I feel the angels have been there pulling my load. There are still times of peace and love.”

This sort of resilience is typical among caregivers Griffin encounters in her research. “I am amazed by their spirit,” she says. “I never finish (a caregiver) interview without thinking, ‘I can’t believe how they have persevered.’ It’s heartbreaking and heartwarming at the same time.”

Griffin and her team surveyed 564 family members caring for veterans discharged from VA polytrauma treatment centers. The results are both encouraging and cautionary. Thirty percent of the caregivers said their veterans needed very little help. “That’s a sign that rehabilitation works,” she says. “My hopeful side is that a certain portion do get better and go on to lead functional lives.”

Even so, 22 percent are completely consumed by their roles. Half of these “high-intensity caregivers” are providing care more than 80 hours a week, Griffin says. “That is a pretty vulnerable group that needs a lot of support.” And their stress doesn’t subside over time, as some might expect.

“The take-home message is that the consequences of war extend far beyond the veteran who has fought, to families and communities,” Griffin says. “Those consequences will extend a long time, and families and communities are not well-prepared for what that takes. VA has a role in setting that up.”

Dignity and Equality. Going forward, families and veterans advocates hope that VA’s role will include revamping respite care and caregiver counseling. “Neither are easy to access or appropriately provided,” Schulz says.

Indeed, Wade’s options for respite care include leaving her husband at a VA hospital, nursing home or similar institution for up to 30 days a year. But he would be miserable in such a restrictive environment with an older population, she says. “I was adamant, because of our experiences, that respite care be age-appropriate for the veteran,” Wade says of her work to help draft the legislation. “That isn’t happening.”

For the Wades, another option is using a home health agency of VA’s choice. But Ted says he’s uncomfortable having a stranger caring for him at home, and Sarah is leery of leaving him with someone not well-versed in his needs. “They typically aren’t experienced with cognitive and neurobehavorial issues (such as TBI and PTSD) and they aren’t trained to deal with mental health issues,” Wade says. “Polytrauma care can’t be cookie-cutter. Each individual has unique issues that compound each other.”

The fix is straightforward, caregivers say. Families should be able to hire an approved provider of their choice to stay with a veteran when they need the help. “I don’t expect VA to be able to provide it all,” Wade says. “Leverage community resources to provide the best and most appropriate care.”

VA officials say they’re open to making changes. “We’re aware we have work to do in this arena,” says Deborah Amdur, VA’s chief consultant for care management and social work. “We are working with our community partners on alternatives.” VA also hopes to introduce an alternative telephone support program to help caregivers who cannot access the current counseling options.

VA and caregivers, however, are still at odds over increasing caregiver stipends to recognize the 24/7 strain on families. VA says it will contract with home health agencies to supplement family caregiving where it’s deemed necessary for more than 40 hours a week, Amdur says. “We understand the significant burden many of these families are under and want to support them with supplemental care in the home as needed. We know the stipend does not replace employment. It is meant to be a recognition of sacrifices the family caregivers make.”

For caregivers, however, this reinforces how poorly VA understands the situation. “We wrote this bill because home health agencies were either an inappropriate resource or limited as far as usefulness,” Wade says. “Ted’s doctor has said since 2005 that a home health agency is clinically inappropriate care. Shouldn’t that be enough?”

Caregivers are also mystified by VA’s willingness to spend huge sums of money on home health agencies instead of assistance appropriate for young veterans with a range of complex physical and cognitive injuries. “The idea isn’t to simply put the veteran somewhere and keep them alive,” Wade says. “If VA is willing to spend the money for Ted to be miserable with a home health agency or a group home and separate him from society, why would they not be willing to use that money to provide quality of life and further his independence as well?” she continues. “Our country owes it to Ted to treat him with dignity and equality.”

Outside of VA, meanwhile, there is broad support for expanding the post-9/11 caregiver assistance program to families caring for veterans of all eras.

“I know that would be very costly,” Schulz says. “But it sort of puts a rift between generations when one gets it and, for the others, it’s ‘Oh, no, you can’t have it.’”

“I’ve fielded a lot of calls from people who say, ‘I’ve taken care of my husband since Vietnam,’” de Planque adds. “I have a lot of sympathy for that. We hope to get that changed and are working toward that goal.”

VA will present a report to Congress on the feasibility of expanding the program next spring, but there’s no indication where that will lead. Despite the flaws in the caregivers act, families of post-9/11 veterans can’t imagine being able to do this work without the assistance.

“Without the caregiver stipend and attached benefits,” Schulz says, “I would probably be much like I was for the first six years – treading water, but never knowing what event may come along and sink me.”

Ken Olsen is a frequent contributor to The American Legion Magazine.