Just days before the school principal called her in on a parent's complaint in fall 1999, it occurred to teacher Ellen Hayward that she had been crossing the line in the classroom for some time. "I didn't have the same patience with the kids," recalls the 56-year-old Hayward. "I was getting more volatile and losing my temper. I don't know how I kept working."
The teacher's apparent personality change was distressing to everyone involved, particularly Hayward, who had always loved her job. But there was a reason behind it. She taught 13-year-olds full time by day. By night she had another job caring for her 62-year-old partner, Sheldon Kugler, who had been diagnosed in 1996 with Alzheimer's, a brain disease that slowly but inexorably destroys a person's memory and ability to reason and function.
"I had to help him bathe, brush his teeth, take him to the bathroom, change his diapers, make meals -- everything," she said.
With a second shift at home, and no time for herself, Hayward felt pushed to the limit. "I needed more time, I felt like a balloon about to burst," she recalls.
At this point, Hayward knew it was time for some changes. "The principal was very responsive," she says, adding that he encouraged her to take a few weeks off and come up with a solution. After taking some time to get exercise and relax, she contacted a stress therapist and found a teacher who could substitute for her when necessary. Finally, she proposed trimming her schedule to four days a week, and the principal accepted. "That made a huge difference; it's what made me able to finish the year."
Hayward is one of a burgeoning group of workers whose needs until recently were largely invisible. And because of worry about losing their jobs, many caregivers are reluctant to speak openly about it. "This isn't so different from the situation two decades ago, when there was a lot of stress [among working parents] looking for childcare, " says Bonnie Lawrence of the San Francisco-based Family Caregivers Alliance (FCA). Now that's openly talked about, she says, and working caregivers are speaking out more as well.
More than 50 million Americans are caregivers, according to a report by the National Family Caregivers Association in Maryland. Perhaps half of them are faced with the difficult balancing act of earning a living and caring for an ill relative at home, the survey reports.
The average caregiver is a 46-year-old woman who works full time and spends 18 hours a week providing care for a chronically ill mother who lives nearby, according to a study by the National Alliance for Caregiving and the American Association of Retired Persons. Additionally, the report notes, about 41 percent of the nation's caregivers have children at home.
As the number of caregivers continues to grow, slowly but steadily, so have the number of options. And though the task of finding solutions can be difficult, there is often more help available than caregivers are aware of.
If you have been working at least a year for a company with 50 or more employees, for example, the Family Medical Leave Act (FMLA) lets you take up to 12 weeks of unpaid annual leave without losing your medical benefits or job.
Of course not everyone is eligible for the family medical leave, and even those who are may find their employers less than cooperative. (One employee settled a claim against America On-Line for an undisclosed sum; she charged that the company fired her shortly after she took time off to care for her dying mother.) Others, like Elaine Millan, a public health nurse in San Francisco whose mother has a lung disease and is on oxygen to help her breathe, had to find other routes. "I was using my sick and vacation time to take my mother to appointments," says Millan, who eventually got her mother in an adult day care program that handles medical needs.
Two-thirds of working caregivers providing support to an elder have to rearrange their work schedule, cut their hours, or take unpaid leave to meet responsibilities. But some companies are finding that ignoring caregiving employees is cutting into their profits. An estimated $17.1 to $33.6 billion per year is lost by US businesses due to caregiving. These losses result from absenteeism, elder care crises, workday interruptions and replacing employees who have been forced to quit jobs, among other factors, according to a 2006 study by MetLife and the National Alliance for Caregiving.
Seeing the costs, some companies have figured out ways of keeping their caregivers at work by helping them out. When worker surveys at Fannie Mae, a Washington DC based financial services company, showed that 70 percent of the respondents thought they'd soon be caring for an aging parent, the company took action.
The company, which is on Working Mother's list of the 100 best companies to work for, hired an onsite elder care case manager. "Employees can talk to this person as often as needed; she'll hold their hand and help them figure out what to do, whether it's figuring out Medicare or long-distance caregiving," explains Fannie Mae spokesperson Alfred King. The company also allows flexible work schedules, telecommuting, and personal leave to take care of ailing parents and relatives.
Although some companies say they can't foot the bill for such a program, King insists that it's cost effective. "A large number of employees said that if it weren't for having the onsite elder care consultant, they would have had to leave the company. It saves a lot in terms of losing employees." For Fannie Mae the cost would be $8,000 to refill a position. And, as King points out, the company has a 90 percent retention rate.
If you live in a small town or few services are available in your area, some help was made available in 2000 when Congress approved the National Family Caregivers Support Program. Under this program, some $150 million of federal funds are made available to states each year to coordinate counseling for caregivers, respite care, and assistance in identifying and finding needed services.
Meanwhile, for some who juggle the demands of work and caregiving, leaving a job may be the only option. One caregiver taking care of a husband who has dementia left her full-time job when it was apparent that her husband was unable to comprehend things around him. She now works as a computer consultant, and has been able to set her own work conditions. "My bosses have known in the last few assignments about my husband, and I always tell them I need the flexibility in my work."
Beyond the adjustments of schedules and responsibilities, teacher Ellen Hayward advises new caregivers not to forget their own needs, even though her initial reaction to such advice was incredulity. "It made me so angry; I thought, 'there's no time for that.'" But, she reflects, "the longer I'm in this, the more I see that sometimes you just have to put yourself first."
Your Area Agency on Aging can fill you in on the National Family Caregivers Support Program and give you contacts for the following services. Some may have waiting lists, but many or all may be available in your area.
Adult Day Care: provides activities in a safe environment, usually during work hours and sometimes transportation to and from the facility. Some programs also provide medical care. Anyone over the age of 60 could be eligible for subsidized day care. Otherwise costs range from $35 to $50 per day, and $75 a day for programs that provide medical care.
Meals on Wheels: a federally funded program that delivers hot meals to the home. Anybody who is 60 years or older and homebound is eligible. On average across the country, one meal a day is delivered five days a week, but programs vary.
Respite Care: churches, senior centers in some areas can provide volunteers to stay with an ill relative for a few hours to allow caregivers time away from home.
The Veterans Administration provides respite care for veterans. Additionally, caregiving associations, and illness-specific organizations, like the Alzheimer's Association offer caregivers a break.
Transportation: Local government in many areas provide door-to-door transportation services or taxi vouchers for people who cannot drive because of disability or illness.
Support groups: Dealing with the demands of caregiving can be emotionally draining. A support group can help you find ways to solve day-to-day problems and vent your feelings with others experiencing similar situations.
Family Caregiver Alliance FCA provides information and referrals for caregivers. 800/445-8106 http://www.caregiver.org
National Family Caregivers Association An organization that provides information, educational materials, support and a voice for family caregivers. 800/896-3650 http://www.nfcacares.org
National Alliance for Caregiving Provides pamphlets and brochures on caregiving; produces reports. 301/718-8444 http://www.caregiving.org
Eldercare Locator A hotline that helps you identify services in your area. 800/677-1116 http://www.eldercare.gov
Interview with Les Plooster, National Alliance for Caregiving; Alfred King, Fannie Mae Financial Services spokesperson; Moya Benoit Thompson, spokesperson for Administration on Aging
National Family Caregivers Association. Caregiving and Work: Caregiving Statistics. 2002-2010. http://www.nfcacares.org/who_are_family_caregivers/care_giving_statstics.cfm#4
Met Life. The Met Life Juggling Act Study: Balancing Caregiving with Work and the Costs Involved. www.caregiving.org/data/jugglingstudy.pdf
National Center for Policy Analysis. The Cost of Caregiving. http://www.ncpa.org/sub/dpd/index.php?Article_ID=9950
MetLife Mature Market Institute and National Alliance for Caregiving. The MetLife Caregiving Cost Study: Productivity Losses to U.S. Businesses. July 2006.