Diane Carruba hasn't been in the same car with her husband in a very long time. She doesn't want them to die together. She doesn't know what would happen to her son. A member of the sandwich generation, Carruba is the primary caregiver to her son - who suffers from ADHD, as well as a seizure disorder that has led to a developmental disability - and also cares for her mother, who is newly diagnosed with Alzheimer's disease.
Until recently, she'd never planned what would happen to her son when she was gone.
"[Caregiving] turns into a time-consuming part of your life and you do the best that you can," she says. "It doesn't leave you a lot of time to think about the future."
Last spring, Carruba's employer, Newport Hospital in Rhode Island, offered a special-needs planning seminar. Carruba and 10 other caregiving employees learned about beneficiary designations, future medical and housing needs, government benefits and setting up a special-needs trust. She says it changed her life. "Just listening to the information and having the acknowledgement that you're not alone was huge."
After the session, she arranged to meet with the financial planner who conducted the presentation and has since contacted an attorney to make legal and financial arrangements for her son's future should she die prematurely.
More than one in six American workers act as caregivers, according to the Gallup-Healthways Well-Being Index released in July, and 24% of those caregivers say that providing care to an aging family member or relative keeps them from being able to work more. As the sandwich generation - those employees who care for young children as well as their aging parents - grows, employers might want to consider offering special-needs seminars as a benefit. Otherwise, they might be at risk of losing talented employees who simply can no longer manage the dual responsibilities of a full-time job and caregiving.
"There need to be practical supports before someone gets to that point of winding down work responsibilities," says Kathleen Kelly, executive director of the National Center on Caregiving. Anywhere from 18% to 23% of caregivers cut back their hours or leave the workforce to provide care in a given year.
Moreover, 22% of caregivers report being exhausted when they go to bed at night, according to the Center on Aging Society. Caregivers also are less healthy than noncaregivers: They are 49% more likely to have been diagnosed with depression, while adult caregivers younger than 30 are 63% more likely to have high blood pressure and 61% are more likely to have recurring neck or back pain.
"We know that people who are caregivers have higher health care costs," says Pam Kalen, vice president of membership at the National Business Group on Health. "Recent data show that the average additional costs are 8%, which is a result of them having additional medical conditions, such as hypertension and diabetes, which can be caused by the caregiving lifestyle." However, if support is given to sustain them in their work roles, caregivers don't necessarily sustain those poor levels of health.
The Rosalynn Carter Institute for Caregiving offers an array of programming to employers, most at no-cost, but, "it'll take buy-in from employers to make it sustainable," says Leisa Easom, the Institute's executive director.
Flexible work schedules and telecommuting are other ways employers can help accommodate caregiving employees. Though 24% of companies offer telecommuting and flexible work hours as a benefit, according to staffing agency Accountemps, not all organizations are able to provide that "across every industry. If you need people staffed at all times, it'll be harder," says Debbie L. Harrison, senior regulatory analyst at the National Business Group on Health.
One such company that offers those flexible work-life benefits to its employees is Baptist Health South Florida. It offers a caregiver voluntary benefit that includes 100 hours a year of care in the home at $2 an hour.
"If you're worrying, you can't do your work," says Yvette King-Archer, BHSF's manager of employee health management. The hospital system also offers a flexi-work schedule, so though King-Archer only works 32 hours a week, she still maintains her benefits and is able to advance her career.
In a recent MetLife survey of caregivers, 60% of respondents said that there is too little information about financial assistance available, and 55% said it's difficult to find.
"A lot of health professionals don't tell people the kinds of issues you'll need to think about. They're not the [most pleasant] conversations to have," Kelly says. "Whether or not businesses want to pay for that time of consultation varies, but it could help a lot of workers make the hard decisions. The information is all out there. What's not there is someone to talk to."
One challenge for employers is knowing whether or not they even have employee-caregivers on staff. Like Carruba, who doesn't disclose she is a caregiver to all her colleagues, employees can be hesitant to tell their employer they have someone they care for at home for fear it might affect the way their work is evaluated. "It's a private issue, especially in the employment setting.You never want it to impact work performance or for there to be a perception of that," Carruba says.
As a result, attendance at seminars like the one Carruba attended hovers at around 2%, according to the National Alliance on Caregiving. Barbara Arcangeli, head of HR at Newport Hospital where Carruba works, says it had a 1.1% attendance rate at its seminar.
"We have to get above the 2% rate. It's unacceptable," says Gail Gibson Hunt, president & CEO of the National Alliance for Caregiving.
She says supervisors are a critical part of creating a culture of acceptance in attending workshops and taking leave. "The CEO can come out with a letter saying that everyone can use it, but if the line supervisor doesn't buy into it, you don't do it," says Hunt.
"Finding a way to reach those supervisors and getting them on board is critical."
