NC braces for a boom in seniors, but caregivers are already exhausted

When her husband’s stage 3 oral cancer spread to his tonsils in 2021, Leigh Anne Staton stepped in as his main caregiver. Her care for him consists of everything — bathing, mixing up his nutrition shakes to satisfy his poor appetite, helping him get to the restroom and more.

Two months ago, PET scans showed that the radiation and chemotherapy helped rid his body of the cancer, but also caused severe damage to his mouth and overall health — resulting in a “failure to thrive” diagnosis, Staton said.

Becoming a caregiver for her husband, Eric, has taken an emotional toll. Staton, 70, had plans for this stage in her life. Plans to travel and be social with her husband. But now the money saved for their golden years is being spent picking up out-of-pocket costs their insurance won’t cover.

“It’s emotionally exhausting to have the person that you shared your life with all these years and had plans to travel with and go out and be social with, and you look around and see other couples your age that are doing that, and it is devastating to not be able to do that, and lonely,” Staton said.

More than 2 million adults in North Carolina — more than a quarter of the adults in the state — are family caregivers.

It’s a demanding role that asks for a significant amount of time and energy to help a loved one with everything from treating complex medical conditions to everyday activities such as eating, bathing, getting around and going to the restroom. And outside a few rare exceptions, it’s done without compensation.

In the past 10 years, the number of caregivers has increased by 20 million nationally, according to the American Association of Retired Persons. That increase has come with a financial strain and emotional stress for families across the country and in North Carolina.

A recent AARP study found that more than half of North Carolina’s family caregivers experienced at least one financial hardship because of their care responsibilities. Families have stopped saving, incurred debts and put off their own retirements to help care for their loved ones.

This comes as the state’s senior citizen population is expected to explode by 2050 — pushing more individuals into a caregiving role.

In response to the study and the expected increase in the senior citizen population, experts are urging families to prepare now, not later, to ensure their loved ones have the best options and caregivers are able to limit their financial and emotional stress.

Becoming a caregiver is something that many stumble into rather than plan for, experts say. This leads to families having to make tough decisions, said Cindy Kincaid, family caregiver program manager at Centralina Regional Council.

“They start to have to prioritize care over daily living for themselves,” Kincaid said. “Do I pay my mortgage or do I buy mom’s medicine? Learning how to prioritize that and then the stress that all of that causes on a caregiver,”

Tough financial choices

Getting older is inevitable, but many people aren’t prepared to give or get care, state aging experts say.

By 2043, North Carolina’s population of adults 85 and older is expected to increase by 142%. In Mecklenburg County, it is expected to jump by 200%. This population is most likely to need the assistance of caregivers.

Sometimes an unexpected event lurches family members into becoming caregivers. Other times, families can tell when their loved one is approaching an age when they are no longer able to be independent, but often don’t want to face the realities, says Mary Bethel, board chair for the North Carolina Coalition on Aging.

“Denial is a great coping mechanism,” Bethel said. “If you deny it and you just kind of don’t face it, then things kind of go on for a while. Lots of times, it’s that precipitating event that happens that you can’t deny anymore.”

Those who aren’t prepared are forced into difficult financial choices.

According to AARP, 38% of North Carolina caregivers had to stop saving, 27% had to take on more debt, and 22% left bills unpaid or late to ensure they can provide care for their loved one.

Many of these financial hardships are caused by an increased cost of care and the decision by some to leave the workforce to take care of their loved ones, says Jennifer Szakaly founder and CEO of Caregiving Corner.

In 2023, the average cost of a private room in a nursing home was upwards of $116,800, according to Genworth – the largest long-term care insurance provider. The average cost of a home health aide is around $6,000 a month. According to Bankrate, a couple with one or more children on average has $12,500 in savings.

For many, those costs are insurmountable.

“We see that same kind of decision-making split happen with working moms after they have a baby. And they’re trying to figure out, is it worth it for me to go back to work? And they’re up against the daycare cost,” Szakaly said. “And so we kind of see that in later life, when a daughter typically is, you know, considering like, gosh, OK, it’s going to cost $8,500 to put dad in care. But if I’m making $6,000 a month, wouldn’t it make just more sense for me to stop working and for him to stay with us?”

Emotional impacts

Caregiving can not only impact finances, but it can also put a strain on family relationships and dynamics without the proper preparation, experts say.

More than a quarter of North Carolina’s caregivers are “sandwich generation caregivers” — meaning they care for an older adult and someone under 18 at the same time. And more than half of North Carolina’s caregivers also work, according to the AARP study.

“Caregivers find themselves in multiple roles without potentially the support of those other family members. You know ‘You’re doing a great job!’, ‘Keep it up.’ ‘God bless you.’ ‘We couldn’t do it without you.’ You know is great to hear. But it doesn’t really assist me as a caregiver in easing my burden,” Kincaid said. “I think oftentimes being able to have those open and honest conversations with the rest of the family at the onset of a caregiving situation, and not waiting until you’re so overwhelmed…”

Staton, whose husband Eric had the oral cancer, has been able to get help from hospice and a family friend to help look after him and give her a break from his day-to-day care. Aside from finding ways to take breaks, she stressed the importance of having a community to help with the emotional challenges caregiving can bring.

“I read something once that said when life is like a storm, you’re on a highway and the rain is coming and the wind’s blowing, and you go under an overpass, or go under a bridge, there’s that moment of silence and that moment (where) you can take a breath. And it’s peaceful,” Staton said. “And then you come out on the other side of the bridge, and you’re back in the storm. So find a bridge. Find people who are bridges for you. Because you have to breathe, you have to take care of yourself. If you don’t take care of yourself, then you can’t take care of them.”