By Yen Duong

Within five minutes of meeting her, Jessica Knavel had poured out her heart about her grandfather’s death.

“My mom passed away two years ago, and he was really the only connection I still had with her,” Knavel said. She and her husband encouraged him to leave Florida and move closer to them.

“He [said] ‘If I pass, I want to be at my home,’” she remembered.

“He passed away in his home where he wanted to be.”

Knavel’s experience and her desire to share is common but rarely discussed, said Peter Wong, author of the book The Caregiver’s Toolbox.

“One of the challenges that people don’t realize [is] that caregivers quite often don’t ever get a chance to tell their story,” Wong said. “There’s a connection point, there’s a common denominator and it’s a huge one.”

According to the National Center on Caregiving, around 43.5 million Americans act as unpaid caregivers, or about one in six adults.

In 2015, Wong and co-author Carolyn Hartley wrote their how-to guide for caregiving which covers everything from requesting second opinions and managing passwords, to wrestling with medical bills and planning funerals. He spoke at a fundraiser for Healthy Charlotte Alliance at the Myers Park Country Club in Charlotte on Oct. 25.

“Sometimes people don’t realize the task that they’ve taken on is normal,” Wong said. “It’s the new normal.”

‘Club sandwich generation’

Knavel and Wong first met two weeks before the fundraiser. Later that evening her grandfather died.

Knavel said she was moved by something Wong told her when they met.

“Something [like ‘my] legacy from my mother and my grandfather lives through me,’” she said. “I never thought about that. The caring that you give to other people come from the generations before you and the generations that will be after you.”

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But those generations are under stress.

Caregivers in the U.S. are often part of a “sandwich generation,” caring for their parents and their children, said Redia Baxter of the Western Carolina chapter of the Alzheimer’s Association. Some are even in a “club sandwich,” with the added burden of caring for grandparents.

The Alzheimer’s Association 24-hour helpline is staffed by trained social workers who can direct callers to local resources and help. 800.272.3900
“We encourage caregivers to reduce their stress and be healthy and know that they aren’t alone in that journey,” Baxter said.

The Alzheimer’s Association offers a 24-hour helpline for caregivers of dementia patients, staffed by social workers and mental health professionals.

“We are here and more than happy to help them as they take this caregiving journey,” Baxter said.

Baxter emphasized that caregivers also need reprieves from their duties and they need to find a team of supporters who can step in, if only for a few minutes. For example, caregivers can find someone to sit with their charge while they go grocery shopping for half an hour and get “the moment you need to get away from that caregiving,” she said.

Alzheimer’s Association has a list of recommendations for caregivers:
  • See Your Doctor: Visit your physician regularly and listen to what your body is telling you. Any exhaustion, stress, sleeplessness, or changes in appetite or behavior should be taken seriously.
  • Get Moving: In addition to helping you stay healthy, exercise can help relieve stress, prevent disease, and make you feel good.
  • Eat Well: Heart-healthy eating patterns, such as the Mediterranean diet, are good for overall health and may help protect the brain.

That’s what Baxter did. For years, she drove from work in Charlotte to Columbia, S.C. on the weekends to help care for her aging mother.

She said she had a break from caregiving during the week when home in Charlotte, unlike her father, who watched after her mother all the time.

“My dad was my mom’s primary caregiver, he needed a form of respite. He needed a team of people around him,” Baxter said.

Lonely, and expensive

In North Carolina, an estimated 466,000 unpaid caregivers take care of Alzheimer’s and dementia patients, according to a press release from the Alzheimer’s Association. The estimated 531 million hours of care that caregivers provide annually are worth more than $6.7 billion.

“We charted out that average caregivers [spend] between 15 to 20 hours at work while they’re doing caregiving tasks,” Wong said.

Caregivers who work outside the home still need to set up appointments, provide or arrange transportation to medical visits, and wrangle with insurers over medical bills, which may contain errors.

“The time and effort for people trying to deal with that because the concern over finances and getting those bills taken care of take a couple hours each week,” Wong said. “Those are just health care issues; we’re not even talking about non-health care issues, [like] how do you get your mom in the car seat-belted correctly because she has a hip issue?”

Business cultures can intimidate caregiving workers from asking for family leave or seeking help from their employer, Wong said. But if those employees wait until a crisis and abruptly take time off because they are uncomfortable sharing their caregiving stories, they can leave employers in a lurch.

As reported by the National Center on Caregiving, 69 percent of workers who are engaged in caregiving said that those responsibilities caused them to change their work hours or take unpaid leave.

“That’s part of our conversation today, the crisis that’s going across the United States,” Wong said.

Graphic credit: Caregiver Action Network

Looking for options and support

Many caregivers who need to take time off from work are entitled to 12 weeks of unpaid leave through  the Family Medical Leave Act. But FMLA applies only if workers have worked at least 1,250 hours in the previous year, have worked at their employer for at least one year, and the employer has more than 50 employees.

Local Area Agencies on Aging exist in all parts of the state to act as resources for help and advocacy on caregiving.

The Agencies on Aging differ by county, but can include support for in-home aides, transportation for grocery-shopping or medical trips, or hot meals, said Sara Maloney of the Centralina Area Agency on Aging. She said Centralina works with a network of around 50 providers who offer services at no cost to qualifying caregivers.

“Anytime a caregiver needs resources, we welcome them to give us a call and we can talk about different options and get them connected to the right resources,” Maloney said.

North Carolina AAAs may be able to help caregivers find respite funds so their charges can go to adult day programs, skilled nursing facilities or take advantage of other options to give caregivers a break through the NC Family Caregiver Support program, Maloney said. Many programs are limited to caregivers for older adults, but some programs cater to caregivers of patients of all ages, Maloney said.

AAAs can also help caregivers of Alzheimer’s disease or related dementias get support from Project C.A.R.E., Caregiver Alternatives to Running on Empty, another North Carolina program.

Many people can find solace and support by recognizing their role as a caregiver, Wong said. Knavel, who moved home to care for her mother after college, didn’t recognize herself as a caregiver, she said.

“Anybody [would] take care of your parents or make that emotional [investment],” Knavel said. “I mean, it was my mother, so I have to take care of her.”

Baxter added, “You do what you have to do for the people you love the most. It’s about the quality time you spend with them. That’s what’s the most important.”

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Yen Duong

Yen Duong covers health care in Charlotte and the southern Piedmont for North Carolina Health News.