Caregivers are taking care of their parents, their jobs and their kids. But who is taking care of them?

Ashley Smith, 35, has been caring for her mother, who suffers from dementia, with her 29-year-old sister ever since their father dropped off their mother and left two years ago. The Irving, Texas sisters were working 60- to 70-hour weeks in real estate and coding; now they’re down to 40 as they pause their careers to take care of their mom, who’s just 61. They don’t date. They don’t see friends. “I don’t have the emotional capacity to sustain a relationship,” Smith told Moneyish. “I’m always apologizing: ‘I’m sorry I’m such a crappy friend.’”

But the Smith sisters know that this is the right thing to do, for however long they need to do it. “My mom did the same thing for me 35 years ago,” Smith said. “I just didn’t expect to have to do this for her so soon.”

She’s one of more than 43.5 million Americans who provide regular care for an older adult (usually a relative, spouse or partner) as an unpaid, informal caregiver, according to the National Alliance for Caregiving and the AARP. And 10 million (about one in four) are millennials 18 to 34.

More than 43.5 million Americans provide regular care for an older adult, and one in four are millennials. (asiseeit/iStock)

To do so, 69% of them must rearrange their work schedules, cut their hours or take unpaid leave, according to a recent “Taking Care of Caregivers” report from Facebook and caregiver support program Cariloop. The average working caregiver spends 20-plus hours a week on caregiving responsibilities — essentially an unpaid side gig — and pays $6,954 a year out-of-pocket, almost 20% of her income, on caregiving costs.

That’s a conservative estimate. Smith is spending $4,000 a month alone on a professional caregiver to watch her mom on weekdays while she works. She carries a $10,000 to $15,000 balance on a credit card that she opened for her mother’s meds, adult diapers and other expenses, such as a $250 specialized shower chair. Their insurance deductible is so high that almost everything is out-of-pocket. “I can manage to pay off $5,000 to $7,000 each month, but the costs keep going up, even though I’m trying to keep my total debt managed,” she said.  

Debbie Rhodes, 64, from Spokane, Wash., has taken care of her parents for the past seven years. Her dad was diabetic and passed away two years ago; her mother has Alzheimer’s. She lives on the same property as her parents, and her job as an HR specialist at her county library was just two blocks away, so she was able to juggle caring for her parents and working 40-plus hours a week, for a time. Her mother’s long-term insurance policy has covered the $5,200 a month for professional caregivers seven hours a day, so Rhodes could work, and she was close enough to dash home if something came up. Which she has had to do, a lot. “I had a very, very understanding boss, which really helped,” she told Moneyish. “I could come in late if I needed to, or come in on a Saturday.”

About half (49%) of working caregivers also report coming to work late, leaving early or taking time off to care for their loved ones. Fifteen percent have had to take a leave of absence, and 14% took a demotion or cut hours to hang onto their jobs, while 5% have had to turn down a promotion, Cariloop reported. Four percent took early retirement, and 6% quit working entirely.

Working caregivers struggle to juggle taking care of their loved ones with their jobs. (PeopleImages/iStock)

That hurts businesses’ bottom lines, too. Companies lose between $17.1 billion and $33.6 billion annually on lost productivity, depending on the level of caregiving involved, Cariloop noted, or $2,110 for every full-time worker who cares for an adult.

Six months ago, Rhodes lost her job of more than 19 years after a new, less sympathetic boss came in and took away that flexibility. “The work culture changed, and I could no longer work and care for my mom,” she said. “It’s hard losing your job. It’s hard finding a job at 64. And it’s really hard to make up that $45,000 salary.”

Kay Bransford, 54, had a lucrative marketing career when she started caring for her parents in 2012; her mom was diagnosed with vascular dementia, and her dad with Alzheimer’s. But caregiving commanded all of her attention — especially since she was part of the “sandwich generation” that also had young children (then ages 4 and 9) to look after, along with her parents. “I wasn’t at the top of my game at my job, as a mom, or as a daughter. I felt like I was failing everyone,” she said. So Bransford left her corporate job. “When I asked myself, ‘What is it that I need to do right now?’ it was, ‘I need to help my parents,’” she said. Her parents have passed, but she has since founded MemoryBanc, a service to organize the documents and details that a caregiver needs to assist a loved one.

These devoted daughters are not alone. Women make up the backbone of this unpaid caregiving community; the majority (66%) of caregivers are female, and the value of the informal care that they provide ranges from $148 billion to $188 billion annually. But it’s costing them in career opportunities and retirement savings. The negative impact on a caregiver’s retirement fund is approximately $40,000 more for women than it is for men, the Family Caregiver Alliance reported, and women also lose the equivalent of $324,044 in lost wages and Social Security benefits when caregiving during their prime working years. In fact, a recent Merrill Lynch study found that women may save up to $1,055,000 less than men by retirement age due to their lifelong pay gap, as well as workplace interruptions such as caring for a sick parent or spouse.

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And if you haven’t been a caregiver yet, it’s probably only a matter of time: The number of people over 65 in the U.S. is expected to increase by 111%, from 45 million in 2010 to 86 million in 2050, as life expectancy continues to increase. But longevity doesn’t necessarily mean living better; a 2016 report warned that most age groups are living longer with a disability or other health problem. And those call for caregivers.

More than 43.5 million Americans provide regular care for an older adult, and one in four are millennials. (asiseeit/iStock)

But this is rarely a change people are prepared for; debilitating injuries or terminal diagnoses often blindside families, and someone may suddenly need full-time care for years.

“When you get pregnant, there’s basically nine months to prepare for that baby to arrive, to get the nursery ready, to buy bottles and diapers, and to talk to your employer,” said Jisella Dolan, 42, the global advocacy officer at the Omaha, Neb.-based Home Instead Senior Care, which runs a Daughters in the Workplace program for working caregivers. “But when a parent or a loved one needs you, it’s usually in a crisis situation — your mom broke her hip, or your dad has dementia — and you have a second to figure out what you’re going to do.”

In fact, the day that Home Instead gave Dolan a job offer 11 years ago was the same day she learned that her father had a rare lung disease and was given six to 18 months to live. She almost turned down the job, because the paid-leave policy wasn’t generous enough at the time for her to help care for her father, who lived seven hours away. But then she had a candid discussion with her potential boss about her dilemma. Her employer was flexible, and she was able to accept the position and still support her father in his last six months of life. Daughters in the Workplace offers tips to speaking with your employer about your caregiving needs here.

“Flexibility can be so helpful,” said Dolan, “such as working remotely or telecommuting, which we’re seeing more and more. Or even if your mom is having a bad day, and the (professional) caregiver can’t come until noon, letting someone work from home in the morning with their phone and laptop, and come into the office in the afternoon, can be a lifesaver. The accommodations don’t have to be radical.”

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Some workplaces have expanded their paid leave policies and offered flexible schedules to help employees caught between work and caregiving. Bristol-Myers Squibb Company recently announced that employees would get expanded paid leave for critical life events, including caregiving for seriously ill family members. Cigna Corp.’s new Caregiver Leave Program gives up to four weeks of paid leave for its U.S. employees caring for others, including seriously ill family members. Microsoft offers four weeks of paid leave for caregivers, with eight additional weeks of unpaid time off. And Starbucks announced paid time for its hourly wage workers to take care of sick family members, plus paid parental leave, for the first time this year.

Five U.S. states (California, New Jersey, Rhode Island, New York and Washington) and the District of Columbia have enacted laws guaranteeing paid family and medical leave as of January 2018. And hope is on the horizon with the bipartisan Recognize, Assist, Include, Support and Engage (RAISE) Family Caregivers Act passed by Congress and signed by President Trump last January, which requires the U.S. Secretary of Health and Human Services (HHS) to develop a national strategy to support family caregivers within 18 months.

But in the meantime, many caregivers are struggling to get by one day at a time. Rhodes’ mother’s long-term insurance policy runs out in a few weeks, so she won’t be able to cover the $5,200 for professional caregivers to help her anymore. “I can’t afford the $8,000 to $10,000 a month to put her in a facility, so at that point, I just don’t know,” said Rhodes. “We’re just doing the best we can.”