Employee caregivers find no easy choices, fewer supports

Changing faces, changing benefits - The impact of demographic shifts on the benefits landscape

Employee Benefit News - November 2007 - by Kelley M. Butler

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This article is the last in a six-part series, "Changing faces, changing benefits," which chronicles six growing workforce populations and arms employers with information to shape benefits to attract and retain workers in those groups. The previous five installments appeared in the June 1, July, August, Sept. 1 and October issues of EBN, and are available online at BenefitNews.com.

Two years ago, Carol Hickman, 68, and her husband were living a "very free lifestyle." She was the senior director of compensation, benefits and HRIS at Wild Oats, a Colorado-based supermarket chain (recently purchased by Whole Foods), and not only did she enjoy her work, "my husband and I traveled, and we had built a community of friends," she recalls. "People always told us we were living the good life and I would say, Yes, we are.'"

However, in 2005, circumstances quickly changed. Hickman's daughter, living in Maine as a single mother of four, fell seriously ill. At the same time, Hickman's mother, who had been living with one of Hickman's sisters, began calling asking to move back to her home in New York - "not because she was not being well cared for, but because she just wanted to be in her own home." 

Hickman and her husband talked many times over several weeks about whether to move back east to care for her mother and daughter. "We were on a seesaw," she remembers. "One day we said, We should do it,' and the next day we said, No, we shouldn't.'" However, as her mother's calls asking to go home became more frequent and her daughter grew sicker, Hickman and her husband decided to leave their jobs, home and the "good life" to move themselves and her mother into her mother's home in New York and become full-time caregivers. 

Fighting the stigma 

Hickman is one of the nation's 44 million caregivers and among the 2.4% of employees that MetLife says leave the workforce entirely to meet caregiving responsibilities. 

"There's no way I could have worked," she says of the time she spent as a caregiver. "Although I felt young enough to keep working, I just couldn't. My mom and daughter were on my mind constantly, and my husband and I would trade off spending days with one or the other. It just takes the wind out of your sails." 

As someone who has been on both the employer and employee side of elder care, "employers need to understand their demographics," Hickman asserts. "If they have an aging population - as most do - they need to be looking at this. Almost every employer has an EAP, but they have to really be looking at what benefits they offer specifically for caregivers and potential caregivers. I know it would have helped us."

Caregiving expert Cindy Carrillo, founder and president of Work Options Group, which aids caregivers in finding backup elder care, couldn't agree more. 

"Baby boomers went from working and having children to working and caring for their parents, grandparents and other family members. It's a dynamic our country has never seen before," she says. 

Sandra Timmermann, director of MetLife's Mature Market Institute, says that despite the current and growing need, elder care doesn't get the attention it deserves in the workplace because "there's still a stigma in caring for an elderly parent." 

Carrillo agrees, "In our society, child care stresses are acceptable, but we don't accept aging and death, so employees aren't talking about elder care as readily. Employers are saying, Employees aren't complaining about it, so it's not an issue here.'" 

Plus, Carrillo says, elder care "is hard for employers to handle because companies want things they can predict and control, and life just isn't that way." 

The flux of caregiving is something Hickman knows all too well. After spending six months caring for her mother in New York and daughter in Maine, a battle between Hickman and her siblings resulted in the sale of her mother's home and her mother moving to live with one of Hickman's sisters. 

Now, with her daughter on the road to recovery and mom once again living far away, Hickman and her husband have relocated to Maine, where she works as a consultant and author on benefits issues. Although she says she'd like to find a full-time position, "when you leave to care for an elder, it's hard to go back and find a position with an employer. They say employers are seeking boomers with wisdom, expertise and knowledge, but they aren't making themselves known," she says. "I hear it, but I don't see it." 

Sadly, Hickman reports that she continues to have a strained relationship with her siblings and has lost touch with her mother. Thinking of her mother and time spent caregiving brings forth difficult emotions, but "we're okay with life now. We're at peace." 

Search for support 

Although Hickman is in a place where she's come to terms with her mother's situation, many employee-caregivers aren't as fortunate. 

"Most boomers have or will go through this, so there needs to be a greater sensitivity to it," Timmermann asserts. "There's still a disconnect [with employers] in terms of providing more support." 

The disconnect hit home with Arianna (last name withheld), 49, when she found herself in a dual caregiving role - a single mom raising her son, 10, and daughter, 16, while caring for her mother, 77. In 2001, her mother experienced a severe stroke, leaving her completely paralyzed on her right side, without speech and wheelchair bound. 

Working at the time as a teacher in a Boulder, Colo., school district, Arianna used her three-week winter vacation to travel to Colorado Springs and oversee her mother's care in the hospital. Over the course of the next year, Arianna and her mother shuttled between Boulder and Colorado Springs for rehabilitation. For several months, she also brought her mom to live with her and her children. 

During that time, though, her employer "was not very involved in what was going on with me," she says. "I had personal days, and I took the time off that I had, but it never occurred to me to ask for more [leave or elder care benefits and resources] - which is strange, because I have no problem asking when it's for one of my kids. But when it comes to children, [my employer] is extremely compassionate." 

Arianna was left alone to find care for her mother and support for herself and her children. Although she found an adult day care program for her mother during the day, mixing caregiving with full-time work and motherhood was "more than any of us anticipated. 

"It was so draining, physically and emotionally," she says, adding, "I had a hard time finding support groups for me and my children. I checked with the hospital and hospice, but I couldn't find anything for our situation, because those groups all deal with death. Even though my mom was gone in the way we all knew her, there was nothing for the in-between of what we were going through." 

Ultimately, the strain became too much, and Arianna moved her mother back to Colorado Springs to live, enlisting professional in-home caregivers and a network of friends to care for her. "I felt so much guilt, but I had to scale back and let go," she says. "The guilt still comes and goes, but I've made my peace with it. But it took me a long time." 

What employers can do 

Experts say - and caregivers affirm - that resources, flexibility and support are highest on caregivers' benefits wish-lists.

Flexible hours, paid time off and the option to telecommute all will win points for employers. "Having someone using their vacation time to care for a parent is not the thing to do," Hickman says. 

Timmermann adds that employers also would do well to consider offering legal and financial services to caregivers. "They may need help understanding Medicare and Medicaid eligibility," she says. "Plus, financial education can help them watch out not to derail their own security - understand the consequences of leaving a job before getting the 401(k) match and potential loss of income, or explaining long-term care insurance." 

On the legal side, both Arianna and Hickman experienced issues concerning their mothers' power-of-attorney documents. Arianna had to go to court to be named her mother's legal guardian in order to make final decisions about her care and finances. 

Further, employees are not eligible to allocate funds from flexible spending accounts to care for a parent unless the parent is declared the employee's dependent, raising another legal challenge.

"If a parent were a dependent, they could be added to an employee's health plan, but the employee has to go to court to get custody of the parent," Hickman says. "But that's hard to do, since most elderly parents have their own homes and some source of income, either from Social Security or a pension." 

Lastly, elder care resources and support groups that are well promoted are a valued part of any benefits program. "Even if a company didn't have work-life benefits, having the HR/benefits department research resources in the community and be able to pass it along is helpful. Not having to do the research on my own would have made a huge difference," Hickman says. 

Mark Willaman, founder of ShirleyBOARD.com, an online caregiving journal and networking site, notes, "Companies can spend a lot of money on benefits, but flexibility and turning employees on to resources are low cost and high value." 

Carrillo says simply that execs need to ask themselves, "What kind of company do we want to be? If we want to be a business that values our people, we have to recognize the cost of not supporting them." 

According to Hickman, HR/benefits managers are just the people to start the conversation. "Employees need someone to talk to, and someone in the HR/benefits department is the best place for them to turn." 

Read expanded elder care coverage at BenefitNews.com, "The We' generation: When retirement and family needs collide." (http://ebn.benefitnews.com/asset/article/204041/we-generation-retirement-and-fa mily-needs.html?pg=) 

Elder care fast facts

 * 44 million Americans over age 18 currently are caregivers for an elderly loved one. Most of them work full-time. 

* Every day, 7,000 people turn 65, and most will require some type of in-home care before they die. 

* 40% of employees take 17 days of unpaid leave per year to care for an elderly loved one. 

* There are currently more than 700,000 home health care aids working in the United States, a figure that is expected to increase 41% over the next decade. 

* The average daily rate for adult day care centers is $61. The average hourly rate for home health care aids is $19. 

Sources: ShirleyBOARD.com, the Labor and Health and Human Services Departments, MetLife Mature Market Institute. 

Additional resources 

* ShirleyBOARD.com - A free resource for caregivers allows users to keep an online journal about their caregiving experience and loved ones' progress, create an electronic contact list of their loved ones' physicians and find caregiving peers to get advice. 

* Caregiverstress.com - Sponsored by Home Instead Senior Care, which provides nonmedical, in-home care and companionship to seniors, the site features a stress assessment tool and provides tips for avoiding and dealing with stresses and strains of caregiving. 

* Assist Guide Information Services - www.agis.com, allows caregivers to search for elder care facilities and resources in their area. 

* National Alliance for Caregiving - www.caregiving.org 

* National Institute on Aging - www.nia.nih.gov 

(c) 2007 Employee Benefit News and SourceMedia, Inc. All Rights Reserved.