Informal family and unpaid caregivers often sacrifice pay, benefits and their own health. Here's why

Caption

Jane Grillo encourages her son, Joe Grillo, to communicate by touching her hand.

Credit: Ellen Eldridge / GPB News

Paurvi Bhatt spent most of the last three decades as an unpaid caregiver for her parents.

"My father had early-onset dementia and Alzheimer's at 58," she said. "He passed away at 75. And alongside all of that, my mother had multiple cancers since I was 3."

Bhatt said she felt lost as a second-generation Indian immigrant because she didn’t have the experience of watching her parents care for their parents.

"My grandparents were in India and that was a whole set of other issues that my parents had to manage: the pain of not being right there as things were happening," Bhatt said.

Her 78-year-old mother died last year.

Now, at 56, Bhatt is realizing she may not have someone to care for her when she needs help.

There are currently about seven potential family caregivers per adult, according to the Centers for Disease Control and Prevention.

But that number drops to four by the year 2030.

That’s partly because the number of baby boomers, now in their senior years, grew by more than 50% over the last decade.

Almost 20% of Georgia's population is older than age 60, and about 10% of the state's seniors are living alone, but only about seven caregivers exist for every 100,000 residents, according to data analyzed by The Mesothelioma Center.

There are not enough caregivers available for the baby boomer demographic group, whose members over age 65 grew from 41 million people in 2011 to 71 million in 2019 — a massive 73% increase.

The U.S. Census Bureau estimates this number will keep rising, projecting it will reach 82 million by 2030.

The number of people available to help future generations also drops because, when people choose caregiving, it often means giving up paid work.

"I wish there was more like that for caregivers, because when you have an adult child and there are no services for them, that's when you really need that support." — Jane Grillo, parent mentor

People who need longterm care

Adults like Joe Grillo also need around-the-clock care.

The 21-year-old has difficulty vocalizing his needs, Jane Grillo, his mother, said.

"He has spastic quad cerebral palsy, which means all four of his limbs are impacted," Grillo said. "And spastic means that he's very tight and rigid."

Grillo left her career to provide the bulk of that support.

"Before Joe was born, I had a full-time career and I made a decent living," his mother, Jane Grillo, said. "And now I'm working part-time — and have been for 15 years."

She is a parent mentor for White County schools, helping other families in similar situations because finding out a child has a disability can be heartwrenching, Grillo said.

"I can come to them and say, you know, 'I'm on that road and we're going to walk down that road together,'" she said. "'I'm going to help you. You don't have to do this alone.' I wish there was more like that for caregivers, because when you have an adult child and there are no services for them, that's when you really need that support."

But Joe is lucky.

He had to wait six years for it, but a Medicaid waiver now provides 18 hours a week of in-home care. That, plus his hours at school, allows his mom to work.

But next year, when Joe is 22, he will no longer qualify for school-supported services. 

His mom is hoping for more direct support hours from Medicaid when Joe is out of school.

"This is a planning year and he may have a gap year next year," Grillo said.

She wants to find a community program where Joe can interact with others. Some place stimulating — that isn’t too far from home.

That’s the only way Grillo said she can continue to work.

"Because of Joe's level of support that he needs, technically, he has nursing home level support for care," Grillo said. "There are no day services programs for adults like Joe with his level of need in our community."

Paid leave policies could help

Research from the Washington Center for Equitable Growth shows paid family leave policies help employees balance work and family.

But Georgia does not require employers to offer paid time off.

That means for some caregivers, the only real option is to quit.

• MORE: Georgia may be best for business. But this 30-year-old policy is why some say it's worst for workers

Many unpaid caregivers leave professional careers or dramatically reduce their hours to help their elders — especially those diagnosed with dementia in their 40s or 50s.

The Alzheimer’s Association said diseases of dementia cost the nation $321 billion in 2022. And deaths have increased 145% over the last two decades.

Eileen J. Tell, a researcher concerned with aging and health care policies, said 70% of unpaid caregivers fear they’ll have to leave their jobs without more help at home.

That means sacrificing income, benefits, and, in the case of one of Tell's friends, their own health.

Her friend wanted more help, but finding aides proved difficult. So, he took on his wife's care while holding a job.

"He had a heart attack because he just was used up," Tell said. "He couldn't take enough time for himself to take care of himself, to get the respite care that they need and whatnot. And he ended up dying."

Tell said that her friend’s employer could have offered help with finding aides by using third-party company like Homethrive in Atlanta.

"The benefits to the employer are significant in terms of not only worker productivity retention and recruitment, but also the, in terms of their return on investment, in terms of their own health benefits," she said.

She notes that solutions are desperately needed because everyone is affected by the shortage of family and paid caregivers.

"As former first lady Rosalynn Carter says, 'you are either a caregiver, a care recipient, or someone responsible for caring for others,'" Tell said.

"We need to treat our direct care workforce better in terms of a livable wage," Tell said. "Some agencies have had good luck with worker retention and recruitment when they provide education, tuition reimbursement and education."

• RELATED: Survey says employer support of caregivers would boost productivity and retention

Cost of in-home care

For those who can’t quit working, there’s the cost of paying a caregiver to consider. 

Susan Brown owns Right at Home North Atlanta, an in-home care service for seniors.

Care can cost between $27 and $35 dollars an hour, she said, at a monthly rate of $1,745 to $6,575. Additional services could increase the cost of care.

"They get frustrated when I tell them it's not covered by Medicare," Brown said. "Families have to understand it's an out-of-pocket expense."

Brown said 70 to 80% of their clients pay out of pocket.

While the care may cost that much, the caregivers themselves don’t earn that. On average, home care workers in Georgia make only about $30,000 a year. 

Brown said that makes them hard to hire.

"Because, especially in the North Atlanta area, it's very expensive to live here and the caregivers can't afford to live here," she said.

So, caregivers might not be available even for those with the means to pay.

Nationally, that leaves almost three-quarters of working caregivers worried about balancing responsibilities of work and home.