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A soldier back home and damaged, a family interrupted

A growing number of spouses, parents and partners are dropping most everything in their own lives to care for loved ones back from war who can no longer do for themselves.
/ Source: The New York Times

April and Tom Marcum were high school sweethearts who married after graduation. For years, she recalls, he was a doting husband who would leave love notes for her to discover on the computer or in her purse. Now the closest thing to notes that they exchange are the reminders she set up on his cellphone that direct him to take his medicine four times a day.

He usually ignores them, and she ends up having to make him do it.

Since Mr. Marcum came back in 2008 from two tours in Iraq with a traumatic brain injury and post-traumatic stress disorder, his wife has quit her job as a teacher to care for him. She has watched their life savings drain away. And she has had to adjust to an entirely new relationship with her husband, who faces a range of debilitating problems including short-term memory loss and difficulties with impulse control and anger.

“The biggest loss is the loss of the man I married,” Ms. Marcum said, describing her husband now as disconnected on the best days, violent on the worst ones. “His body’s here, but his mind is not here anymore. I see glimpses of him, but he’s not who he was.”

Ms. Marcum has joined a growing community of spouses, parents and partners who, confronted with damaged loved ones returning from war who can no longer do for themselves, drop most everything in their own lives to care for them. Jobs, hobbies, friends, even parental obligations to young children fall by the wayside. Families go through savings and older parents dip into retirement funds.

Even as they grieve over a family member’s injuries, they struggle to adjust to new daily routines and reconfigured relationships.

Enduring the strain
The new lives take a searing toll. Many of the caregivers report feeling anxious, depressed or exhausted. They gain weight and experience health problems. On their now frequent trips to the pharmacy, they increasingly have to pick up prescriptions for themselves as well.

While taking comfort that their loved ones came home at all, they question whether they can endure the potential strain of years, or even decades, of care.

“I’ve packed my bags, I’ve called my parents and said I’m coming home,” said Andrea Sawyer, whose husband has been suicidal since returning from Iraq with post-traumatic stress disorder. “But I don’t. I haven’t ever physically walked out of the house.”

Those attending to the most severely wounded must help their spouses or adult children with the most basic daily functions. Others, like Ms. Marcum, act as safety monitors, keeping loved ones from putting themselves in danger. They drive them to endless medical appointments and administer complicated medication regimens.

For many U.S. vets, life becomes a revolving door of war, home, then back to combat — where they again face the same dangers and stresses.

One of the most frustrating aspects of life now, they say, is the bureaucracy they face at the Department of Defense and the Department of Veterans Affairs, from problems with the scheduling of medical appointments to being bounced around among different branches of the system, forcing them to become navigators and advocates for their loved ones.

A variety of care services are offered to the severely injured. But many family members do not want their loved ones in nursing homes and find home health services often unsatisfactory or unavailable.

Despite Ms. Marcum’s cheerful manner and easy laugh, she has started taking antidepressants and an anti-anxiety medication when needed. She has developed hypertension, takes steroids for a bronchial ailment that may be stress related, and wears braces to relieve a jaw problem.

“I just saw all of my dreams kind of vanishing,” she said.

Trying to help financially
Over the past few years, advocacy organizations like the Wounded Warrior Project lobbied Congress to pass a law providing direct financial compensation and other benefits to family caregivers of service members. In 2010 they succeeded, and by mid-September, the veterans agency had approved 1,222 applications, with average monthly stipends of $1,600 to $1,800. Caregivers can also receive health insurance and counseling.

“We know it doesn’t replace full lost income,” said Deborah Amdur, who oversees caregiver support for the agency. “It’s really a recognition of the kinds of sacrifices that are being made.”

While families express deep gratitude for the help, questions remain about who will qualify and how compensation is determined, advocates for veterans say. Furthermore, the law applies only to caregivers of service members injured in the line of duty on or after Sept. 11, 2001, eliminating help for thousands who served in earlier conflicts.

And the emotional strain is still palpable as families struggle to adjust to what many call their “new normal.”

Role reversals
In a reversal of the classic situation in which adult children help out ailing parents, a substantial number of the caregivers of post- Sept. 11 service members are parents caring for their adult children.

Rosie Babin, 51, was managing an accounting office when a bullet tore through her son Alan’s abdomen in 2003. She and her husband rushed to Walter Reed Army Medical Center and stayed at his side when Alan, then 22, arrived from Iraq. He lost 90 percent of his stomach and part of his pancreas. His kidneys shut down and he had a stroke, leaving him with brain damage. He eventually underwent more than 70 operations and spent two years in hospitals, his mother said.

Ms. Babin fought efforts by the military to put her son in a nursing home, insisting that he go into a rehabilitation facility instead, and then managed to care for him at home.

But since her son’s injuries, her doctor has put her on blood pressure medication and sleeping pills. Now, while deeply grateful for her son’s remarkable recovery — he gets around in a wheelchair and has regained some speech — she sadly remembers the days when she looked forward to travel and dance lessons with her husband. Instead, she helps Alan get in and out of bed, use the bathroom and shower.

“I felt like I went from this high-energy, force-to-be-reckoned-with businesswoman,” she said, “to a casualty of war. And I was working furiously at not feeling like a victim of war.”

'They feel stuck'
Research on the caregivers of service members from the post-Sept. 11 era is just beginning, said Joan M. Griffin, a research investigator with the Minneapolis V.A. Health Care System who is leading one such study. (The V.A. estimates that 3,000 families will benefit from the new caregiver program; 92 percent of the caregivers approved so far are women.)

What makes the population of patients receiving care different, Ms. Griffin said, is their relative youth. “The V.A. has not had a significant influx of patients of this age group since Vietnam,” she said, with a result that caregivers are looking at a “long horizon of providing care.” And one in five returning service members, a previous study found, report symptoms of post-traumatic stress disorder or major depression.

Ms. Griffin’s research shows that many family members spend more than 40 hours a week providing care. Half feel that they do not have a choice.

“They feel stuck,” Ms. Griffin said.

Some walk away.

'It's my job'
For Ms. Marcum, 37 — who has an 18-year marriage and two sons, ages 14 and 11, with Tom, 36 — there was never a question of leaving. “I’m his wife and it’s my job, whether he’s hurt or not, to make sure he’s O.K.,” she said.

When she first asked for a leave of absence from work to care for him, she expected it would be for just a few weeks, while doctors got to the bottom of the migraines keeping him in bed for days on end. When he was up, he often seemed confused and sometimes slurred his speech. After 12 years in the Air Force, where he worked as a weapons specialist, he was suddenly having trouble taking a phone message or driving home from the base.

Mr. Marcum, who endured several mortar attacks in Iraq, one of which knocked him unconscious, eventually was given diagnoses of traumatic brain injury and post-traumatic stress disorder.

“My wife, I would imagine, probably felt as if she was a single parent for a while,” said Mr. Marcum, who is now medically retired from the Air Force. “She had to raise two boys. And now at times she probably thinks that she’s raising three boys,” he added with a laugh.

Ms. Marcum has found relief at a weekend retreat for military wives in her situation, and on a private Facebook page where caregivers vent, offer emotional support and swap practical advice. Participants say online communities like these are often more supportive than their extended families, who sometimes retreat in the face of such overwhelming change.

Financially, at least, things are looking up for the Marcum family. Ms. Marcum was awarded the highest tier of coverage through the veterans agency’s new caregiver program, giving her a monthly stipend of $1,837. Physical, occupational and speech therapy have all helped Mr. Marcum improve, but she worries that his progress has plateaued.

“We kind of have been in the same spot for a while,” Ms. Marcum said.

As proud as she is of her husband’s service, Ms. Marcum feels guilty that neither of them now works, and hopes that one day she will again hold down a job, while continuing to care for him. She pictures herself working somewhere relaxed, like a Hallmark store, where she could chat with people and help them with cards and gifts. It would be an escape, she said, from the stress at home.

This article, first appeared in The New York Times.