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Family caregivers face growing challenges

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By Christina Lee Knauss

Johnny Belissary recently met a woman trying to care for her husband, who suffers from Alzheimer’s disease. The man had recently started waking at midnight and walking to the kitchen, where he’d pull every dish out of the cabinets and then repeat the process multiple times. His wife, in her 80s, had not had a good night’s sleep in weeks.

Her difficult situation led her to seek help from New Generations Adult Day Care Center, where Belissary serves as administrator. New Generations has facilities in Florence and Marion and plans to expand to Greenville this year, said Belissary, who also works with the S.C. Institute of Medicine and Public Health on issues involving long-term care.

The 80-year-old woman struggling to help her husband is just one of thousands of S.C. residents serving as family caregivers.

According to statistics compiled by AARP and the National Alliance for Caregiving, about 43.5 million caregivers nationwide provided unpaid care to children or adults in the past year. That adds up to an estimated 37 billion hours of care, including 34.2 million for an adult 50 or older.

The S.C. Department on Aging estimates that there are more than 770,000 caregivers in South Carolina, with that number likely to grow as the population ages and more people move to the state, particularly those close to or at retirement age.

The S.C. numbers reflect a nationwide trend. Data from the 2016 U.S. Census showed that in 2035, the number of people age 65 and older will outnumber those 18 and younger for the first time in U.S. history, with older adults making up 23.5% of the population to 19.8%.

“If you’re asking if we’re at the tip of the spear or if we’re behind the curve, I think, depending upon the issue, we are at different points of the continuum,” said Dale Watson, director of S.C.’s Long-Term Care Ombudsman Program. “We understand that our population is graying, and we understand that they will require resources. That’s why we make a continuous effort to make legislators aware, because it will require resourcing, but we also make the community aware so that they can begin to plan locally on the things they need to do to address these concerns.”

Experts say people take on the challenge of caregiving for many reasons — financial necessity, love, or a desire to help loved ones avoid having to enter a nursing home. Being able to stay at home, or “age in place,” can be a comfort and a benefit to a senior adult because they can stay in familiar surroundings and carry on with established routines, according to Hank Page, outreach director for the S.C Department on Aging.

“We’ve heard from all kind of committees and testimony that seniors really like staying at home, and our programs are designed to help them with that if they so choose,” Page said. “If they would like to go to facility and have the resources to do so, then by all means, they can do that, too.” 

In-home caregivers can face daunting problems. Many take a financial hit because they have to reduce work hours or leave work altogether, while their physical and mental health can also suffer because most caregivers are on the job day and night, according to a 2015 AARP national study on caregiving in the U.S.

SOURCES OF HELP

As the number of caregivers grows, organizations around South Carolina are stepping up efforts to help. The state was recently one of five selected to join Helping States Support Families Caring for an Aging America, a multi-state learning group with the goal of enhancing programs to support caregivers of older adults.

The 18-month initiative is funded by charitable foundations and will be run by the Center for Health Care Strategies. South Carolina’s participants will include Medicaid staffers as well as workers from the Governor’s Office, the S.C. Department on Aging and Health and Human Services. 

The Department on Aging is increasingly making outreach to caregivers a priority and recently launched a website called getcaresc.com, which offers information about service providers statewide for senior citizens, family caregivers and adults with disabilities, according to Page.

Supporting caregivers has been one of the biggest priorities of South Carolina AARP for more than a decade, director Teresa Arnold said. Arnold said the organization has consistently lobbied the legislature for increased funds to help seniors and their caregivers with a wide range of services, including meals and transportation.

“A lot of times, if we did some stuff on the front end — providing meals in their home or someone to come into their home and help them with their daily tasks — we would probably end up spending less money than we do now,” Arnold said.

A big need of family caregivers is also one that many don’t make a priority, experts say: respite care. Through respite, a caregiver can take a few hours for themselves while someone else steps in to look after their loved one.

Belissary said respite is essential because burnout is a huge problem for caregivers.

“I tell people that caregiving is like a battery — if you don’t charge it up, it’s going to go dead,” he said. “Study after study has shown that caregivers who go without rest end up withdrawing from society and become depressed. A lot of them also deal with self-applied guilt. They feel guilty if they take a break, but that’s what they need. We encourage people to find time to get away and do something for themselves.”

Respite care can be provided by relatives and friends or by an agency offering in-home care. Senior citizens who are able to leave their homes can go to adult day care facilities, while some assisted living facilities offer temporary respite stay programs which can be especially useful if the caregiver needs to go out of town.

Respite care funding assistance is available through the South Carolina Respite Coalition (SCRC), an organization that provides information and support for caregivers.  People can apply for a $500 respite care voucher through the program and receive reimbursement of money paid for respite care.

“We tell caregivers that the commitment they have made is fantastic, but they have to establish the habit of taking regular time off,” said Janet Altman, executive director of the coalition. “Many people will tell us that they can’t trust anyone else to take care of their loved ones, but they have to open their minds to the possibility. Nobody can be a 24-7 caregiver constantly.”

This article first appeared in the March 11 print edition of the Columbia Regional Business Report. 

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