Norman resident Chloe Flanagan spent nearly a decade quietly caring for her aging grandmother. That meant having a phone that never left her hand, the ringer turned all the way up at night, and a second household’s worth of responsibility layered on top of her full-time job.

It worked for a long time.

However, Flanagan’s grandmother, Nadine Followill, known as Mimi, a smart, strongwilled and independent former office manager, became injured and incapacitated after a series of falls. She passed away recently in hospice care. Mimi’s passing at 96 showed the strength of Flanagan’s commitment, but also the years of sacrifice it took to keep Mimi alive, healthy, and independent.

“For me, the goal was always to keep her at home and as independent as possible,” Flanagan said. “That shaped almost everything.”

Flanagan did not plan to become a caregiver, but someone had to do the work. And Flanagan isn’t alone. A recent study shows that Oklahoma ranks third in the country for adult caregiver burden.

The national analysis by Seniorly found that unpaid family caregiving has reached unprecedented levels, with caregivers spending an average of nearly four hours per day providing care. The study shows that Washington state has the highest caregiver burden and the highest cost for in-home health care. Number 2, Montana, has 2,776 people on the Medicaid home-based services waiting list, compared to 7,100 enrollees.

Oklahoma’s high rank is driven by a heavy reliance on family caregivers, the high cost of adult daycare services, and few, little-known resources for families. Oklahoma’s rates for adult daycare are $171, compared to Delaware’s, for instance, at $25.

The problem is also national. Fourteen percent of the civilian noninstitutional population age 15 and over, or 38.2 million people, provided unpaid eldercare, according to the U.S. Bureau of Labor Statistics. About one-fourth (28%) of eldercare providers engaged in unpaid eldercare on a given day, spending an average of 3.9 hours providing this care.

The work that accumulated quietly

Before Mimi’s health declined sharply, Flanagan estimated they spent two to three hours per day managing medications, delivering meals, refilling prescriptions, and checking in. As Mimi’s mobility and cognition worsened, that grew to five or six hours per day, with hospital days stretching much longer.

The work was not only physical; it came with constant vigilance.

“Every night before bed, I made sure I’d hear the phone,” Flanagan said. “I turned the ringer all the way up and adjusted the settings so nothing important would be silenced. It’s been weird not having to do that anymore.”

That low-level, everpresent anxiety is a defining feature of unpaid caregiving and a major contributor to burnout. Caregivers often describe the burden of care as never fully resting, even when they are not actively providing care.

When Flanagan’s grandmother was temporarily placed in a rehabilitation facility after breaking her hip, Flanagan expected the pressure to ease. Instead, it revealed the limits of institutional care and added different burdens and an additional system to learn. One day, Flanagan arrived at the hospital to find Mimi on the floor with a bruise on her head – another fall – and no personnel around to notice. Mimi had gotten up to go to the bathroom and an alarm that would have brought in medical personnel did not function properly.

At a second facility, her grandmother fell again while trying to go to the bathroom unassisted. That fall broke her other hip and eventually led to her entering hospice.

“To prevent that completely would have required someone in the room watching her all the time,” Flanagan said. “That wasn’t the level of care they were there to provide.”

Flanagan sees the incident as part of a larger reality: families are often forced to bridge the gap between what loved ones need and what the system is designed to deliver.

“I didn’t realize she needed 24-hour care until we were already in it,” Flanagan said.

A burden that’s often invisible Like many caregivers, Flanagan never formally identified as one. Under 50, working fulltime, Flanagan handles responsibilities for other family members as well.

“You don’t really think of it that way,” Flanagan said. “You’re just doing what needs to be done.”

That invisibility is one reason caregiver strain is easy to underestimate. According to the AARP, 27% of adults in Oklahoma, approximately 835,000 people, provide unpaid care to loved ones, contributing an estimated $6.6 billion in labor each year, work that would otherwise fall on nursing homes, hospitals, or public programs.

Brenda Strahan, director of Oklahoma’s Area Agency on Aging network, said Flanagan’s experience reflects what agencies across the state are seeing.

“There are many, many people in Oklahoma providing caregiving services for relatives — and sometimes even for friends,” Strahan said. “You may not call that caregiving because it’s not 24-7, but you’re still providing care or doing things that they can’t do that they could have done previously. It’s very common for people to be caregiving for their older relatives. Sometimes it’s a neighbor that they’re caregiving for.”

One of the clearest signals of rising strain, Strahan said, came during the pandemic. Requests for caregiver respite — short-term services designed to give caregivers a break from caregiving to run errands, have a calm meal, or even just a nap — increased sharply midway through the pandemic and they never went back down.

”They were getting more stressed and feeling it more, and were reaching out and requesting services more than what they had in the past,” Strahan said.

Respite services are offered statewide through Area Agencies on Aging for caregivers of adults 60 and older who meet eligibility requirements. The help is limited, often about eight hours per week, and is meant to provide relief, not to substitute for paid employment.

“We tell caregivers: go take a nap, go to the park, do something for yourself,” Strahan said. “It’s designed to give some relief from the load they’re under.”

But funding constraints limit how much help agencies can provide. Strahan said some funding categories declined this year, even as demand remains high. Staffing shortages, especially in rural areas, further complicate service delivery. Strahan said that even when services are approved, staffing shortages can prevent families from actually receiving care.

The information gap

Strahan emphasized the lack of information.

“I think a lot of people just don’t know what’s out there and they’re afraid to ask for help,” Strahan said.

Many caregivers do not call the agencies designed to help them, either because they don’t know those agencies exist or because they assume they won’t qualify for assistance. As a result, families shoulder more on their own until they reach a breaking point.

Flanagan echoed that frustration. Even after years of caring for Mimi, Flanagan still doesn’t know what help is truly available.

“Even searching on Google, I felt overwhelmed trying to figure out what was actually available and what applied to us,” Flanagan said.

Policy responses and limits

Oklahoma has taken some steps to acknowledge caregiver strain. The state’s Caring for Caregivers tax credit, enacted in 2024, allows eligible caregivers to claim 50% of qualifying expenses, capped at $2,000 per family member, or $3,000 for veterans or individuals with a dementia diagnosis. While the new credit recognizes unpaid caregivers’ out-of-pocket expenses, it obviously does not address the time, stress, or personal effort required for caring for a loved one.

Another tool is the ADvantage Waiver, a Medicaid program designed to help eligible adults receive services at home instead of entering nursing facilities. The program can cover in-home care, housekeeping, and other support, but Strahan said the program is strained. Demand has surged, and the program depends on having workers available to provide hands-on care, something that is increasingly difficult in small towns and rural areas.

“It’s really taxing that system because so many people are needing those services,” Strahan said.

A crisis that’s already here

For families like Flanagan’s, the caregiving crisis is not theoretical or looming. It is already shaping daily life, careers, health, and finances, often quietly.

“You don’t realize how much it’s taking out of you until something changes,” Flanagan said. “Then you look back and think, ‘Wow. That was my whole life for a long time.’” As Oklahoma’s population continues to age, experts say the pressure on unpaid caregivers will only grow. Whether the state can keep pace with funding, workers, and accessible information remains an open question. According to Oklahoma’s aging statistics, adults aged 65 and older comprise 16.4% of the state’s population, similar to the national rate of 16.8%. In Oklahoma, however, family caregivers are the ones shouldering the burden.

That burden is longlived. Even after Flanagan’s grandmother died, the work did not simply stop. Estate matters, housing decisions, paperwork, and emotional fallout followed.

“In a lot of ways, it’s not over,” she said. “It’s just different now.”