MYRTLE BEACH, S.C. (WBTW) – Lynda Schwanekamp tries to keep every morning the same. She cleans the bathroom. She makes sure her husband’s clothes are set out. She places his daily incontinence products in the same spot, reminds him to take his pills, and gets his Cheerios, orange juice and a banana.

“Routine is my friend,” she said. 

That daily list helps her husband, who was diagnosed with Alzheimer’s disease in 2017, stay independent. And to help her have the same, she uses respite care – a service designed to give caregivers a break from what can be nonstop stress of caring for a loved one with a disability or medical condition. 

“It gives you the confidence to do things,” Schwanekamp said. “Being a caretaker, your confidence can go down the hill quickly.”

It’s estimated that 770,000 South Carolinians are caring for a family member who is chronically ill or disabled, according to data from the U.S. Department of Health and Human Services. 

Caregivers are twice as likely to develop a chronic condition themselves, and they have higher divorce rates and symptoms of depression and anxiety, according to information in a South Carolina Lifespan Respite State Advisory Committee report.

A year of respite care would cost about $3,600 annually for a family, according to the report. 

About 57% of caregivers in the state are caring for a child, 22% are caring for a spouse or partner and 13% are caring for a parent or in-law, according to the 2020 South Carolina State Advisory Committee report. Among those being cared for, 54% have an intellectual or developmental disability, 28% have Alzheimer’s disease or dementia and 23% have a physical disability.

About 76% of the caregivers surveyed said they were worn out and had a decreased social life. More than a quarter said they had never had respite care to give them a break from caregiving.

But for some South Carolinians, help may be years off. 

The number of respite providers in the state was already low before the pandemic, and the problem has only gotten worse, according to Nicholas Julian, the executive director of the South Carolina Respite Coalition. That means that if someone gets care funded through a Medicaid waiver, they might be on a waiting list for one to five years.

“The benefits aren’t always there for family caregivers,” Julian said. 

That leaves paying privately for respite care, which Julian said can range from $25 to $35 an hour. A caregiver going to a doctor’s appointment for themselves, he said, could cost $70 to cover respite care alone.

That constant attention can wear families down. 

“We hear stories all the time of maybe a dual-income family, where they have a child with a disability or special needs, so one of the parents leaves their career and provides those care services,” Julian said. “The hard part is that there’s never a clock-out time for those parents, because they’ve chosen to provide that care for their child throughout the day.”

With pay for respite care workers often barely over the minimum wage, and it being a job people can be nervous about, it’s hard to attract employees.

“Some people are hesitant to get into that because of the vulnerability and fragile-type nature or aspects, or behavioral issues they may come across,” Julian said. 

There are also barriers where the families are involved. Many families didn’t use respite care during the pandemic because they were worried about bringing someone into their home to care for their at-risk loved one, Julian said. Families can also see caregiving as a private issue.

He said the South Carolina Respite Coalition is writing a grant proposal for five-year funds to work with workforce development training and to create a public registry that would list people who have gone through caregiving training. 

Creating policies that open up availability for families to access benefits, he said, could lead to a positive domino effect to help the worker shortage.

“You would probably see more families taking breaks because of the affordability aspect, and with more families looking to take respite care breaks, then, by nature, you would see more people enter that workforce, because the demand would increase,” Julian said. 

A potential solution for recruitment may be an apprenticeship agreement that started earlier this month between the South Carolina Technical College System and the South Carolina Department of Disabilities and Special Needs. The apprenticeship, while not specific for respite care workers, hopes to boost the number of professions in both the nursing and behavioral analyst space.

The apprenticeship is designed as an “earn while you learn” talent pipeline for people who don’t have experience in a certain career field. It is also for existing employees who want to move up in their current jobs. 

“It’s a win-win for DDSN, and for potential job-seekers because DDSN serves a critical need in the state, and they need individuals who are dedicated with skills and are highly passionate with those in South Carolina who need these services the most,” said Amy Firestone, the vice president for the South Carolina Technical College System’s Apprenticeship Carolina program. “When DDSN can’t find people to do the job, then South Carolinians suffer.”

The program is starting with a pilot at Midlands Technical College. Firestone said it’s one of the first of its kind in the nation. 

“DDSN is really paving the way, not just for South Carolina, but for the entire country,” she said.

The program is open to anyone older than 18. It uses mentors, provides credentials and offers a $1,000 stipend that can be used for childcare and transportation. 

While the five new apprenticeships are not specific to respite care, any time workers are added who can help support people with disabilities, it helps, according to Michelle Fry, the state director of the South Carolina Department of Disabilities and Special Needs. 

“We are already familiar with the workforce shortage that many people are battling in the health care space, but for us, it is even more exciting because it’s investing and creating, and demonstrating the investment in our employees, and growing our pipeline internally, showing that we support them and want to support them and want to be able to enable them to grow and provide those supports,” Fry said. 

She’s excited for the program to be replicated statewide and said that increasing access to care will also lead to a better quality of life for people with disabilities.

The first time she used respite care services, Schwanekamp went to the grocery store. It took her a while to notice that she had been mentally exhausted and her body was tense.

“Then, I realized, well, it’s because I make myself numb because you can’t be on that stress – up and down, up and down – and then I was like, ‘wait a minute, I start to feel normal now,’” she said. “That’s huge.”

She uses care through the Area Agency on Aging at the Waccamaw Region Council of Governments, which does not currently have a wait list.

She uses a system of measures to help manage caregiving. She puts notes at eye level reminding her husband to flush the toilet or brush his teeth. He’s obsessed with stop signs, so she’ll write his serial number with Project Lifesaver on the one in front of their house. Her therapy goldendoodle, Scarlett, is also trained to track down where he’s hiding when she’s asked “Where’s Daddy?”

“He can be anywhere in the house, and she looks at me and goes straight to him,” Schwanekamp said. “If he goes out the door, she’ll bark and come to me.”

After getting respite care, Schwanekamp’s son said he could tell a difference in her demeanor and facial expressions.

“I can’t believe the difference it made,” she said. “Especially after COVID, because you are together 24/7 –- to be able to have your identity is so important.”