Perhaps the most memorable moment of President Obama’s State of the Union address in January was when he introduced Sgt. First Class Cory Remsburg. Nearly killed by a massive roadside bomb in 2009 during his 10th deployment to Afghanistan, the Army ranger was found facedown in a canal. After nearly three months in a coma and dozens of surgeries, Remsburg — who was blinded in one eye — tried to acknowledge the standing ovation on Capitol Hill by standing up. But he needed help. At his side was his father, Craig, who lifted his son from his seat. Once up, Cory flashed the cheering crowd a thumbs-up.
It was a high-profile spotlight on this country’s tens of millions of family caregivers, whom Obama has called “humble heroes” who toil quietly, caring for loved ones: a child with autism, a parent or spouse with Alzheimer’s disease, or a wounded warrior.
“We are heading toward the caregiving cliff,” says John Schall, chief executive of the Caregiver Action Network. “Family caregivers are the backbone of long-term care services in this country, and I’m concerned that we won’t have the capacity to meet the demand, especially as the country ages.”
The Pew Research Center found last year that nearly 4 in 10 American adults identified themselves as a family caregiver and the need is only growing.
Once Craig Remsburg got the news that his son was going to have a “lifelong recovery” from his war injuries, the family scrambled to put a plan in place to help him 24/7 with family members and paid aides. At first, Craig and his wife, Annie, commuted from their home outside Phoenix to Tampa, where Cory was at a veterans’ hospital. With the joy that their son survived came the challenge of helping him live — and no training manual for caregiving.
“As a father, probably my toughest moment was every time I had to get on an airplane and go back to work, ” Craig Remsburg said. But while in Tampa, “I was able to watch my son come out of a coma, slowly emerge into consciousness and start doing things.”
Annie Remsburg ultimately quit her job to help Cory with his physical therapy full-time. After more than two years in Tampa, Cory was transferred to a California facility for intensive physical and occupational therapy. Last year, he moved back to his parents’ house and over the summer to a specially equipped home nearby to provide a “feel of independence,” although he still needs someone around the clock to help him with daily living.
In some ways, Craig and Annie Remsburg are among the lucky ones. Their employers, Telgian and Kelly Services, have been flexible in allowing time off and Annie was given the chance to take an extended unpaid leave and work as a consultant.
Seriously wounded veterans are entitled to many benefits for caregivers that the private sector doesn’t offer. In his State of the Union address, Obama urged businesses large and small to offer employees more flexibility to all types of family caregivers: “A mother deserves a day off to care for a sick child or sick parent without running into hardship — and you know what, a father does, too. It’s time to do away with workplace policies that belong in a ‘Mad Men’ episode,” he said.
Schall said that in the past three to five years, businesses have begun recognizing the need to help employees who are also caregivers. “We’ve gone from zero miles per hour to 10 miles per hour,” he said, noting that there is still a long way to go. But, he adds, “if businesses are smart, they don’t want to lose employees who are caregivers, because to lose them, hire and train someone else, is actually more costly than providing flexibility.”
For parents of the growing number of children with autism, “overwhelming” is the most common word used to describe caregiving. But that’s about all that is common across the autism spectrum. Jennifer Berzok of Bethesda, Md., whose 9-year-old son, Ben, received an autism diagnosis at age 21 / 2, was told by a doctor, “When you meet one kid with autism, you meet one kid with autism.” Unlike cancer or other diseases that have a prescribed treatmentbacked by science, caregivers for kids with autism face a bewildering menu of expensive therapies that may or may not be effective for their child’s issues. Autism spectrum disorder may have some common behaviors — difficulty with social interactions and language deficits — but there’s no one-size-fits-all standard of care.
“Given that autistic children often have sleep disorders, parents are exhausted,” said Julie Fisher, executive director of the New York Center for Autism Charter School (NYCA) in East Harlem. But, she said, the “culture of the ‘super parent’ makes it hard for them to ask for help.”
Shaniqua Gregg said she feels lucky to have “won the lottery” that allows her son Joshua, 14, to attend NYCA. But it’s still difficult at home. “Each year becomes harder because his hormones are raging, he’s unable to express himself and he’s 5-8 and more aggressive,” she says. “We don’t have a lot of down time or a moment to regroup or get away from it.”
Gregg works in the admissions office of a skilled-nursing facility near her home. When she interviewed for the job, she explained that she and her husband were raising a teenager with autism and a toddler. “At first, my boss seemed to have compassion, but she says when she needs to adjust her schedule slightly to meet her son’s needs, “they make me feel as though I have to choose between caring for my child and taking care of my job.”
As exhausting as it is now, perhaps the hardest part of caregiving for a child with autism is the realization, as Berzok says, that “this might be forever. Ben might always be dependent.”
In 2006, when Jacques Benjoar of Silver Spring, Md., was 52, he was driving down a road he had taken countless times, but had to think about which exit to use. At the same time, he started to struggle with the bookkeeping part of his courier business. Without telling his wife, Kathleen Lockhart, he had a doctor do a full work-up, and eventually found out that he was one of about 200,000 people younger than 65 in whom so-called younger-onset Alzheimer’s is diagnosed each year.
Because there is no cure or effective treatment for Alzheimer’s, caregiving becomes increasingly challenging as your loved one loses the ability to communicate. “It was an honor to help him get dressed. He never said ‘thank you,’ but I knew he appreciated it,” said Lockhart who had to split her time between her husband and making sure their two daughters weren’t negatively affected by their father’s illness, continually wondering, “Should I be up there with him or down here with the girls?”
The girls were 12 and 6 when Benjoar’s condition was diagnosed, and as it worsened, Lockhart says, “our older daughter even joined me at asupport group. The kids helped Jacques change the channel on the TV, made him a sandwich or were always on the lookout for him getting lost in the house and they would redirect him.”
Benjoar eventually transitioned to a care facility and died last spring at age 59. “We were supposed to grow old,” Lockhart says. Given Lockhart’s experience, she tells others dealing with loved ones with Alzheimer’s: “Get help and get it early. There is often so much denial in many families it often takes an outsider to help.”
One of the hardest moments for her came when she overheard an older woman at a pool talking about just getting back from a fjord cruise in Norway with her husband and another woman mentioned that she was doing this and that with her husband. “All I wanted was to take my hands and dunk these two senior citizens,” she said.
Although some studies have shown that the typical American caregiver is a middle-aged mother, raising children while caring for an aging parent, many young people also are pressed into caring for a loved one. Connie Siskowski, founder and president of the American Association of Caregiving Youth, says, “We’re supposed to be taking care of kids. They’re not supposed to be taking care of us.” There are no hard data on young caregivers, but Siskowski estimates that as many as 10 million young people have some caregiving role, given the economic pressures on families, including the rise in single-parent households and grandparents raising grandchildren.
The most recent study, from 2008, by the public policy firm Civic Enterprises, found that 22 percent of young adults (ages 16 to 25) who say they drop out of high school for personal reasons did so to care for a family member.
When Bernise Luzincourt was 10, she began caring for her younger sister, who was partly paralyzed. Luzincourt, now 19 and a community college student in Boca Raton, Fla., stepped in because her mother, a nurse, and father, a landscaper, were working long hours. Not long after her sister began to walk again, her mother, a diabetic, had a stroke. “Saturdays were the hardest,” Luzincourt said. “I would wake up, clean the entire house, make my mom a low-salt breakfast, get her insulin, go in the shower with her, pick her clothes, help her put them on. It was overwhelming. I never had time for myself. There were times I would go to church just to get away.”
As Jill Biden recently warned, “as baby boomers age, as injured troops return home from the battlefield, as more people live with chronic illnesses,” the number of caregivers needed is only going to increase. But that won’t be easy. As boomers age, fewer caregivers will be available for them.
An AARP study said that in 2010 there were seven potential caregivers (typically adult children ages 45 to 64) for adults older than 80. But by 2050, that ratio may drop to 3 to 1.
Unpaid family caregiving was valued at $450 billion a year by AARP’s Public Policy Institute in 2009, more than the federal and state Medicaid budgets combined. To help family caregivers, legislation was introduced in Congress late last year that would guarantee up to 12 weeks of paid family and medical leave annually that would provide partial wage replacement for working caregivers. “This law is absolutely needed — it’s just the right approach — but given the current climate, I wouldn’t give it great odds,” Schall says.
“It may be time for a bold idea,” he says. Because of the coming demand for caregivers, he’s mulling over a “Caregivers Corps,” modeled after the Peace Corps. He thinks such a program could recruit from recent college graduates by offering debt forgiveness, retirees looking for new challenges or from the ranks of experienced caregivers who want to help others when their own responsibilities have ended because their loved ones have improved or passed on.