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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

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."

(MORE: Are You a Caregiver or Just a Good Child?)

Research by AARP and other groups has found that people who do not consider themselves to be caregivers often fail to take advantage of available aid. "We need to do a better job of reaching them," Goyer says. AARP polling shows that while 51 percent of caregivers cope in part by praying, fewer than half ask others for help. "They're not even asking siblings, to say nothing of going beyond their networks to local Councils of Aging or veterans groups."

Flexibility for Workers Who Step Up

The first place a working caregiver should look for support is his or her Human Resources department. While fears of losing one's job because of family commitments persist, Goyer says, the reality is that opportunities to work flexible hours are widely available.

The first step, though, is assessing where you stand. Too many caregivers hastily decide to leave a job before considering how much their work means to them or how crucial a regular paycheck is.

Many are able to balance their home and office responsibilities, for example, by starting their workday a little later, after helping parents wake, eat and dress. Some realign their hours to coincide with a home health aide's schedule or to allow themselves to take a parent to and from adult day care. Other possibilities detailed in the e-book: split shifts with co-workers, a workday divided between on-site and at-home hours, and a compressed four-day workweek.
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."

(MORE: The Tipping Points That Turn Us Into Caregivers)

Working caregivers should make it clear that they remain committed to their jobs. Hourly employees often have a more difficult time negotiating flexibility than salaried staff, Goyer says, "but you can't make generalizations. There may be some possibilities you're not aware of."
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.

(MORE: Should Your Family Pay You to Care for a Parent?)

As time goes on, Goyer says, "some people find that their caregiving creates interest in different kinds of work. They want to be in a job that's geared toward a helping profession or working with aging. Their experience as a caregiver can actually help them to a new career path. I know a lot of people whose eyes were opened and said, 'I want to do something else.'"

Discover the Benefits Amid the Challenges

A surprising new study from the Johns Hopkins University Center on Aging and Health has found that caregivers may actually live longer, healthier lives than others.

Contrary to popular assumptions, and a body of earlier research on the physical and emotional toll of caregiving, the study found that more than 80 percent of 3,500 subjects in that role reported little or no emotional strain. In addition, their mortality rate over six years was 18 percent lower than a control group — the equivalent of living nine months longer.
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.

Gary Drevitch was senior Web editor for Next Avenue's Caregiving and Health channels. Read More
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