Jacquie Johnson moved from her home in South Shore to Oklahoma in 2018 to care for her ailing mother, who had chronic kidney failure and dementia. It wasn’t a difficult decision to leave her job as an environmental services supervisor at an Indiana hospital.
“It was my mom,” Johnson, 59, said.
For two years, she cared for her mother and took a pay cut while working at an Oklahoma urgent care center. In addition to the emotional cost of caregiving, it also drained her savings.
“Financially, it takes a toll,” she said. “Honestly, your savings will be depleted.”
Many adults are caring for aging parents or relatives, and some like Johnson must quit their job, or take time off or work reduced hours. And the number of workers taking on caregiving duties is expected to increase.
The fast-aging U.S. population is one of the country’s most important demographic trends. All baby boomers will be 65 or older by 2030. Cook County’s population of adult households aged 65 and above grew nearly 20% between 2012 and 2019, according to the Institute of Housing Studies at DePaul University.
Meanwhile, exhausting caregiving duties are typically unpaid, even as medical bills pile up.
After Johnson’s mother died, she moved to Chicago in 2020. She had already started applying for jobs but had no luck.
“It was such an uphill battle. It was challenging,” she said.
Johnson, a Chicago native with two graduate degrees, including an MBA, applied online for about 20 jobs every day but only got a couple responses.
“It really put me in a state of depression,” she said. “How will I be able to pay my bills and go back to the life I was living? It seemed very hopeless.”
Johnson was grieving and managing her mother’s affairs while struggling financially. She couldn’t afford her car so she left it in Oklahoma. In Chicago, she found herself imagining losing her home. She could barely buy food. “It was a very, very dark time,” Johnson said.
Caring for an aging population
In spite of a national labor shortage that worsened during the pandemic, nearly 20% of adults ages 25 to 54 don’t work, said the Bipartisan Policy Center. The reasons are varied and not completely understood but that gap hurts labor productivity and economic growth.
While the challenges of new parents leaving the workforce — especially mothers — to raise children are well-known, there is far less attention paid to people leaving because of eldercare.
“Too often, employed family caregivers leave the workforce or reduce their hours to fulfill their caregiving duties, which can result in a loss of income, retirement savings, benefits and career mobility,” advocacy group AARP said in a policy brief.
Among caregivers, 53% report going to work late, leaving early or taking time off to provide care, according to a 2020 report from AARP and the National Alliance for Caregiving. About 15% cut back on work hours; 14% took a leave of absence and 8% got a performance warning.
Older caregivers can also struggle when they try to return to work. Even under normal circumstances, people over 50 spend twice as long to find a position after becoming unemployed, researchers have found.
And the costs of providing unpaid eldercare go beyond lost wages. The median direct and indirect costs of caregiving are $180,000 over two years, according to researchers at the University of Pennsylvania’s Perelman School of Medicine. The majority of caregivers are daughters caring for their mothers, researchers noted. That could worsen the gender pay gap, which widens after women have children.
In the U.S., about 48 million family caregivers provide more than $600 billion annually in unpaid care, according to AARP.
Some of them are also simultaneously juggling childcare. Nearly one-quarter of U.S. adults are part of the “sandwich generation” — those with a parent age 65 or older who are also raising or supporting at least one child, according to a Pew Research Center survey.
President Joe Biden spotlighted those challenges when he signed an executive order in April 2023 to support family caregivers. At a White House ceremony for the signing, Biden said, “No one should have to choose between caring for the parents who raised them, the children who depend on them or the paycheck they rely on to take care of both.” Yet many people do.
Returning to work
When eldercare responsibilities end, outside support can help people re-enter the workforce.
Johnson’s job search seemed fruitless, but while taking a computer class, she heard about a program with AARP Foundation and the Chicago Cook Workforce Partnership called Back to Work 50+.
It connected her to career coach Sherri Chrisman, who sharpened Johnson’s resume and helped her refine a brief elevator pitch about herself to prospective employers.
In early 2020, Johnson was offered an office manager position at a Chicago doctor’s office through a temp agency. At first, she didn’t want to take a job that paid slightly above minimum wage. However, Chrisman encouraged her, saying it could lead to other opportunities. Johnson accepted the temp position and performed so well that they offered her a permanent role.
AARP Foundation backs the Back to Work 50+ program in six states, including Illinois. Since it launched in 2016, it has helped more than 100,000 people 50 and older hone their job skills and find employment through workshops and coaching.
In addition to programs, government policies could help caregivers on a broader level. Starting Jan. 1, a new Illinois law will bar employers from discriminating against caregivers.
And in early 2024, lawmakers reintroduced the Credit for Caring Act in Congress. It proposes a federal tax credit of up to $5,000 to eligible working caregivers of parents, spouses and others who need long-term care, though the bill has not advanced.
‘Whole lot of praying’
In 2020, South Side resident Shari Lewis, 52, learned her octogenarian father was diagnosed with bladder cancer. She went on unpaid leave from her job as vice president of strategy at a Chicago home health care company.
For two years, Lewis cared for her father during his chemotherapy, took him to doctor’s appointments and shouldered duties like cleaning and cooking.
When her father’s cancer went into remission, Lewis started looking for a new job in November 2022. She applied for hundreds of positions but got little response. “I guess it was [my] age,” Lewis said.
Her job search continued for months, and she nearly depleted her savings. While paying her mortgage, Lewis struggled with rising costs for groceries, gas and other expenses as inflation spiked. Sometimes she had to decide whether to pay her electricity or gas bill. She stopped paying off credit cards.
As her savings dwindled, she anxiously wondered what would happen next. “You start doing a whole lot of praying,” Lewis said.
After a friend recommended a career coach, she landed a job in July 2023 as director of business development for St. Bernard Hospital.
“When you’re talking about your parents, it’s a no-brainer. You have to take care of them and do what you need to,” Lewis said. Today, her father is cancer-free and living in Tinley Park.
But two years out of the workforce and an arduous job search surprised Lewis — and put her in a financial hole.
“It was definitely a struggle financially,” she said. “I probably should have saved more money. It makes you aware of things you need to have in place.”
Illinois workers caring for family members get legal protections
People with caregiving responsibilities can face bias at work that denies them equal opportunities.
A new state that goes into effect Jan. 1 bars employers from discriminating against people who have to care for children, aging parents and other family members, including those with disabilities
Caregiver discrimination affects all employees, but women, people of color and low-wage workers are most severely affected.
Liz Morris, co-director of the Center for WorkLife Law, said Illinois’ law is the strongest in terms of the family relationships that are protected. It includes employees who care for a child, stepchild, spouse, domestic partner, sibling, parent, mother-in-law, father-in-law, grandchild, grandparent or stepparent.
For more details on the law, click here.