Caregivers do heavy duty on the homefront

Jessica Allen has slept about six hours since Monday.

With tax season weighing upon her, the 34-year-old tax preparer home-schools her two young daughters while providing full-time care for her husband — a former soldier who lost both legs to a roadside bomb in Afghanistan in 2011.

As a report about military caregivers points out, she has little if any time for herself.

“You feel like you’re out in the middle of the ocean, and you feel like you’re treading water. It’s exhausting, I’m not going to lie,” said Mrs. Allen, a resident of Clarksville, Tenn. “But at the end of the day, no matter how tired I get, I just sit down and I’m just thankful he’s here.”

Hundreds of thousands of Americans face similar challenges in caring for loved ones who have returned from war with mental and physical wounds, according to a report by the Rand Corp. of Santa Monica, Calif.

More than 275,000 caregivers work as many as 80 hours a week, providing full-time care for their wounded spouses, children or other relatives, and “often toil in relative obscurity,” says the report, titled “Military Caregivers: Cornerstones of Support for our Nation’s Wounded, Ill, and Injured Veterans.” It was commissioned by the Elizabeth Dole Foundation.

But the real number of caregivers could be as high as 1.1 million, said Terri Tanielian, the report’s lead researcher.

Despite that high number, the public is largely unaware of the challenges military caregivers face, Ms. Tanielian said.

“Often you’re dealing with multiple complex injuries — multiple physical injuries, mental and cognitive disabilities like traumatic brain injury and post-traumatic stress disorder,” she said. Unlike most civilian caregivers, most military caregivers live with those they are caring for, making their duties a 24/7 responsibility.

“They’re helping them eat, dress, bathe, and dealing with things like paralysis, vision loss, hearing loss,” Ms. Tanielian said. “They’re also providing transportation, tending to the house, managing personal and legal affairs. And they’re also navigating multiple and complex systems of health care.”

The physical, mental and emotional toll can be staggering, if not crippling.

Military caregivers tend to have higher rates of health problems and disease, and greater health and emotional challenges of their own, the researcher said.

“They put the health and well-being of the veteran that they’re caring for before the health of their own, and do so to their own detriment,” Ms. Tanielian said. “If they are caring for their spouses, they are often also caring for children and sometimes their parents at the same time. It’s an enormous burden.”

Mrs. Allen said she makes sure to start each day with breakfast; otherwise, she would forget.

Her husband, retired Army Staff Sgt. Chaz Allen, 33, was injured in January 2011 when he stepped on a roadside bomb while on a patrol. He lost both legs above the knee and suffers from post-traumatic stress disorder.

Mrs. Allen has become the main income provider for her family and is responsible for teaching their daughters at home and driving them to dance lessons — all the while caring for her husband, who recently had a painful bout of shingles.

At first, she said, it was like being “dragged through the hallway of hell.”

The Allens began home-schooling their daughters after they had been teased about their father’s condition at school, sometimes by other military children.

Mrs. Allen said she sometimes feels isolated in their Clarksville community, shunned by active-duty military families.

“We’re the reality check,” she said.

She starts each day at 6 a.m. and works until lunchtime, when she home-schools her daughters for three hours and then shuttles them to and from dance class and other extracurricular activities. Afterward, she makes dinner, continues her tax preparation work and nonprofit work and takes care of her husband, who also helps teach the girls and aspires to return to college.

The Rand Corp. study shows that about two-thirds of caregivers have suffered some kind of emotional stress. Others showed a higher rate of depression — from 40 percent to 70 percent — and an incidence of chronic health conditions almost twice that of non-caregivers.

“There is no support for caregivers. It’s all put together by nonprofits,” Mrs. Allen said.

She said she manages with the support of family, friends and her faith as a Christian Baptist. She also is receiving some help from nonprofit groups, one of which is helping build a house for the Allens to better accommodate her husband, who has difficulty getting around their two-story home.

Other programs exist to help caregivers, such as online resources, respite care, training and support networks, but Ms. Tanielian said there’s not enough information to assess whether they are effective, since this generation of military caregiving is relatively young and little is known about them and their experiences.

Mrs. Allen, who maintains a blog about her experiences, says she has been invited to the Pentagon to talk to now-retired Gen. Peter W. Chiarelli, former Army vice chief of staff, and also serves as director of caregiver services for the Yellow Ribbon Fund program in Bethesda, which provides assistance to wounded warriors.

But Kristy Kaufmann, executive director of Code of Support, worries about the military caregivers who are not as vocal as Mrs. Allen.

“The ones that don’t call and go off the grid those are the ones I worry about the most,” Ms. Kaufmann said, adding that she has known caregivers who have committed suicide because they could no longer cope. “They do this day in and day out with little understanding or support. There is the stigma that they need to be strong. Everybody reaches their breaking point.”