What Our 42 Million Working Caregivers Need Most

It's hard to juggle a career and caregiving, but help is out there if you know how to ask for it

By Gary Drevitch
Originally Posted On January 15, 2014

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Gary Drevitch is senior Web editor for Next Avenue's Caregiving and Health & Well-Being channels. Follow Gary on Twitter @GaryDrevitch.

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When a mother has a heart attack, a father takes a fall or dementia leaves a family member unable to care for herself, a full-time worker often becomes a full-time caregiver. In the stress of the moment and the rush to help, the unprepared can sacrifice careers to aid their families. But they don't have to.

That's a core message of Juggling Work and Caregiving, a free new e-book from AARP aging and families expert Amy Goyer.

The author is one of the 42 million Americans who balance full- or part-time work with caregiving — about two-thirds of the nation's estimated 65 million caregivers. Goyer has been a live-in caregiver to her parents for several years. (Her mother recently passed away.) She shares her story and advice in the e-book.

"The statistics make you stand up and say, 'This is important,'" Goyer says. "Too many people don't know that help is out there because they don't identify themselves as caregivers and so they don't think to go looking for resources."

According to National Alliance of Caregivers research, about 57 percent of working caregivers took advantage of a flexible schedule in 2009. But Goyer believes that rate is too low, an indication that not enough employees are investigating alternative arrangements.

"Be as upfront as you can" with managers, she advises. "Many people don't disclose that they're caregiving because they're worried they could lose their jobs. But it's best to tell employers so they don't think you're showing up late because you're lazy."

One legally-guaranteed option for many workers is time off under the Family Medical Leave Act (FMLA). The law allows eligible employees at companies with at least 50 employees to take up to 12 weeks of unpaid leave to care for a family member, without losing their position or benefits. Smaller companies sometimes authorize similar leaves, Goyer says, and a number of states have enacted laws guaranteeing unpaid leave above and beyond the federal statute. "Find out what your possibilities are before assuming you have to quit your job," Goyer says.

Some large employers, though not many, also provide discounted rates for home health aides through arrangements with local agencies. Free or reduced-price emergency adult day care also may be available to employees on days when a home health aide calls in sick.

Plan Ahead So You Don't Have to Panic

Goyer urges anyone who thinks they may become a caregiver to explore all options before an emergency strikes. "You don't want to have stress make a decision for you," Goyer says.

The potential costs of caregiving are very real. According to the recent MetLife Study of Caregiving Costs to Working Caregivers — Double Jeopardy for Baby Boomers Caring for Their Parents, each woman who leaves the workforce or scales back her career to care for a parent forfeits more than $324,000 in wages and Social Security benefits; each man who does so leaves almost $304,000 on the table.

Still, many caregivers decide that their new role requires a significant career shift. Some choose to stay home once they realize they're working full-time just to pay for a home health aide. Others opt to change to a job that offers more flexibility, such as at-home work or entrepreneurial projects.

Few, though, think to ask if they can get paid for being a caregiver. Yet it is not unusual for families to compensate an adult child or sibling for caring for a loved one, especially if that person has surrendered other income to do so. Federal aid for veterans, some Medicaid programs and long-term care insurance can also help.

The study did not focus on the most heavily stressed caregivers — those who live with a care recipient full time, for example, or those whose loved one suffers from Alzheimer's disease or other dementia-related conditions. But Dr. David Roth, who heads the Hopkins center, told Reuters that his team wanted to "emphasize the positive message that caregiving is a healthy thing that we should be doing in our families."

Goyer points out that many caregivers do experience a decline in health, often linked to poor diet and a lack of exercise as they struggle to manage their stress. But she agrees that there are benefits to the role.

"You're intimately involved with someone in the later years of their life," she says. That up-close experience also pushes many caregivers to recommit to their own fitness regimen. "People say, 'Here are the choices I'm going to make later in life to optimize my independence as much as possible.'

"But the other thing is that people do feel good about helping," Goyer says, citing a recent AARP poll which found that found 8 out of 10 caregivers gained satisfaction from the role. "People often go into this seeing only the negative — and you don't want that to become a self-fulfilling prophecy. There are some amazing and positive things about being a caregiver and I try to get across that joyful part of it. I know I have integrated a lot of fun and joy into my life with my parents."

You can download Amy Goyer's e-book, "Juggling Work and Caregiving" for free, from AARP.