Deborah Capers was in the midst of a promising auto insurance career in Texas when she got the call in 2005 that her mother, a dementia patient, had crashed her car into a tree near Summerville.
Capers was 44 at the time and her mother, Evelina, was 76.
The car was totaled, but Caper’s mom survived the crash with very few injuries. Still, the accident convinced Capers that she needed to move back to Charleston.
She held on to her career as a claims adjuster for several more years before letting it go 2014 and becoming a full-time caregiver for her mom, who is now bedridden and uses a feeding tube to eat. In that time, Capers battled breast cancer herself in 2006 and again in 2009.
Capers is one of an estimated 43.5 million adults in the United States who have provided unpaid care to a family member in the past year. The National Alliance for Caregiving published in a 2015 report that most of them, like Capers, are female and middle-aged.
A new study released this month by AARP found that the average caregiver is spending $7,000 in out-of-pocket costs each year on their loved one and up to $10,000 if the patient suffers from dementia.
“My mother always took care of us so I felt like it was my turn to take care of her,” said Capers, the youngest of seven kids. “That said, the bills still need to get paid so I have to be conservative.”
Capers said she uses retirement and savings to pay bills. But other caregivers struggle to make ends meet, according to the AARP report.
Dr. Robert Lake, a palliative medicine physician with Roper St. Francis, said he often sees family caregivers having trouble taking care of their loved for various reasons.
“Assisted living facilities are too expensive,” he said. “As a result, an enormous number of Americans provide this unpaid assistance to families and they don’t really have the support they need.”
Other researchers are offering suggestions on how to help caregivers. Richard Schulz, a professor at the University of Pittsburgh, spearheaded a study released this month by the National Academies of Science, Engineering, and Medicine.
Schulz said state and federal agencies haven't properly addressed ways to assist those who use money and resources to care for their loved ones. One of his suggestions is to provide a stipend each month for these caregivers.
“You would get a Social Security credit as if you were working,” he said.
Beginning in 2017, Shulz said President Donald Trump’s administration should “take steps to address the health, economic, and social issues facing family caregivers of older Americans.”
He added that states should employ similar programs to help caregivers.
The South Carolina Office on Aging has started some work in that arena. According to the office, 770,000 family caregivers in this state provide $7.4 billion in unpaid services each year.
In July, the Aging Office received grant money to create social programs for Alzheimer's patients and their caregivers. In addition, the office now receives $2 million each year from the state government to provide counseling for caregivers.
Elizabeth Ford, a program manager with the Aging Office, said the funding also gives caregivers a respite voucher that allows them to have an aid come take care of their loved one so they can take a break.
"The goal is to take care of the caregiver so the caregiver can keep their family member in the home as long as possible," Ford said.
Capers added that any assistance would be a step in the right direction to help those in her position. She says taking care of her mother is the “hardest job she’s ever done,” but also the most rewarding.
“It would be very beneficial if family caregivers were provided compensation to help with their financial and medical situations,” she said. “We go through a lot and we do it out of love. But we could always use the extra help.”