It was a difficult decision, made with love. After the fire, when Eva Bonilla’s father was released from the hospital, she quit her job, loaded his wheelchair and oxygen tank into her car and made a home for the 84-year old man in her living room.
He had lost everything in the tragedy: his house, his possessions, his wife of 60 years. And now he was losing his body.
It was a humbling experience for everyone involved. Bonilla had always considered her father a hero, the World War II veteran for whom a neighborhood park was named. But there she was, keeping track of his endless medications, scrubbing his dentures, cleaning up after the occasional accident. A modest man, Jesse Sandoval did not want his daughter to have to bathe him, so she called her brother for help. Sandoval, fluent in two languages, on most days had few words to say.
The circumstances of Bonilla's father's decline, from 2008 until his death in 2010, were unique. But her story is one version of an oft-told tale in Texas, where an aging population is living longer but requiring more expensive and sophisticated care, often provided at home.
Shifting demographics paint a troubling picture for the future of at-home caregiving. Growth of the state's elderly population is expected to outpace other age groups at a time when the cost of long-term care is projected to rise. Experts say experiences like Bonilla's will become even more common, as family members end up bearing much of the responsibility — and cost — of caring for their loved ones.
“I nearly lost him so many times,” Bonilla said in a telephone interview from her Fort Worth home. “It was unbelievably stressful. We’re not trained nurses, not trained caregivers.”
The Department of Aging and Disability Services estimates there are 2.7 million “informal,” or unpaid, caregivers in Texas, the vast majority family members. Most are middle-aged women, and about half are employed outside the home.
But that figure is certain to rise. In 2010, elderly Texans made up about 10 percent of the population. By 2050, researchers expect nearly one in five Texans to be elderly, as the adult population over 65 adds about 5.2 million people. The state’s 45- to 64-year-old population, by contrast, is expected to grow by just 3.3 million over the same time.
“The net result of that is that, as parents age and they start needing care, that care is shifted more and more to their children,” said Lloyd Potter, the state demographer.
“But one of the aspects of people living longer is they also live more years with disability,” he said. “They require additional care, because now we’re able to live longer with those conditions."
Bonilla, who lives with her husband and daughter, said it would have been impossible for her to continue her job at a pharmaceutical company while taking care of her father. There were the frequent trips to the doctor’s office, or to labs for tests. He had chronic obstructive pulmonary disease and arthritis of the spine, severely limiting the former athlete’s physical activity. Bonilla would check his toenails for infections, make sure he was receiving enough oxygen and watch for bedsores. Still, he would sometimes lose consciousness.
“I would panic,” she said. “I was not prepared for it.”
About 80 percent of elderly people receiving long-term care live in private homes, often with family members, according to the Congressional Budget Office. The other 20 percent live in institutional settings, like nursing homes.
But even for paid caregivers, like certified nursing attendants, the demands are high, said Teresa Albright, president of the Texas Medical Directors Association of Long Term Care. Pay is low and recruitment is difficult.
“The workforce stability’s not that great and turnover’s humongous,” she said. “The lowest-paid people are doing the hardest work."
Demand for those services will continue to grow as more elderly people seek long-term care, Potter said.
And the result? “It will likely drive up the cost for families,” he said.
Advocates for the elderly are pushing Texas lawmakers to consider legislation that would require hospitals to provide demonstrations for family caregivers about how to perform basic medical tasks at home, like dressing wounds. So far, no legislator has filed the bill, but similar laws have passed in Oklahoma and New Jersey.
“It’s really about making sure that unpaid family caregivers have what they need so that their loved ones can live independently, and longer, in the community,” said Amanda Fredriksen, a lobbyist with AARP Texas. “We’re not looking to replace trained medical professionals with unpaid family caregivers.”
Bonilla said she wished she had been better prepared to take care of her father. But if she had to do it all over again, she said, she would.
Still, the experience has changed her outlook on caring for the elderly. After her father moved in, she purchased long-term care insurance for herself “so that my daughters don’t have to deal with all that,” she said.
In the meantime, her focus is on the new house she and her husband are building. In the coming months, they’ll move onto the lot, which backs up to the park that bears her father’s name.
This story was produced in partnership with Kaiser Health News, an editorially independent program of the Henry J. Kaiser Family Foundation, a nonprofit, nonpartisan health policy research and communication organization not affiliated with Kaiser Permanente.
Disclosure: AARP is a corporate sponsor of The Texas Tribune. A complete list of Tribune donors and sponsors can be viewed here.