A Publication of WTVP

Caregivers often experience a range of difficult issues in the struggle to balance work and family life.

There is a growing population of employees in the workforce who not only hold full- or part-time jobs, but also provide care for an older adult family member or disabled adult child. This may include personal care, bathing, cooking, assisting with medications, dressing, transporting and helping with finances to the extent that it helps family members stay in their homes as opposed to a nursing facility.

A Balancing Act
According to a 2015 AARP study, an estimated 43.5 million adults in the U.S. had provided unpaid care to an adult or child in the prior 12 months. Of these caregivers, about 61 percent were currently employed, either full time or part-time—and they often have to make decisions between work or family care. According to a recent Time article, “just 15 percent of workers across the country have access to paid leave through their employers, and roughly 40 percent don’t even have access to job-protected unpaid leave through the Family Medical Leave Act.”

Many unpaid caregivers contact the Central Illinois Agency on Aging, Inc. hoping to find some relief or support with balancing work and helping a family member stay independent. One frequent request by caregivers is to find out how they can get paid to take care of their mother or father, as their job may not offer the flexibility or time-off benefits in order to take care of personal or family needs.

The value and impact of informal and unpaid caregivers cannot be overstated. A 2009 study by the Family Caregiver Alliance showed that the economic value of the care provided by family caregivers across the U.S. totals $375 billion nationwide. The study also notes that “more than 78 percent of adults 18 and older who receive long-term care at home rely exclusively on family caregivers.” It is for these and many other reasons that policymakers have enacted legislation to protect and support the valuable work that millions of Americans provide to their loved ones in order to help them stay independent in their own home.

That includes the National Family Caregiver Support Program of 2000, which provides grant funding for states and territories to develop programs that support informal and family caregivers. The RAISE Family Caregiver Act of 2018 requires the Secretary of Health and Human Services to develop, maintain and update a strategy to recognize and support family caregivers. The Family Medical Leave Act of 1993 has been instrumental for those who qualify to be able to receive up to 12 weeks of unpaid leave in order to attend to a personal medical condition or illness of a family member or child.

Personal Experiences
I interviewed a few of the working caregivers I have encountered while working at the Central Illinois Agency on Aging, Inc. I will leave them anonymous, but I have received permission to share their experiences in order to bring home the fact that they deserve the support which has started to be extended to them by policymakers and employers.

One caregiver shared that her husband, a talented musician, was diagnosed with Alzheimer’s in 2008, and she was in a state of disbelief. Medical providers started to help her understand the disease, but the disease has so many facets. She said it’s like a roller coaster ride daily, with some days good and others not so good. One of the biggest adjustments when her husband got sick was to change jobs. She moved from her friends at the hospital and a job she enjoyed to a new job at a physician’s office which offered more predictable hours and no holidays or weekends. All of her money had been going to caregivers for the weekends or holidays she had to work at the hospital.

Another caregiver I interviewed had a similar story. Coincidentally, her husband was also diagnosed with a vascular dementia in 2008. She worked full-time at the University of Illinois College of Medicine at Peoria, and her husband was diagnosed seven years before she retired. He was laid off as a customer service/sales representative and tried two other jobs, but was unable to learn them. After a follow-up appointment a year later, the neurologist told her husband to apply for disability. She did not share his diagnosis with anyone at work.

When her husband lost consciousness while driving seven years later (she suspects due to mixing up his blood pressure medicine), everyone was shocked. She was just about to retire—her goal was to reach 30 years working for the state. He spent two weeks in the hospital and six weeks in memory rehab; she took FMLA leave and continued to work part-time as a sales associate at a clothing store. She retired from the state but continues to work at the clothing store because it is a supportive group and the part-time schedule allows her to take her husband to appointments as needed. Working caregivers struggle with many difficult emotional and financial issues, yet there are also positive aspects of being a family caregiver. One of my caregivers had a husband with dementia, takes care of her adult daughter and also provides care for her mother, who lives locally. She thrives on helping people. She states that “if I am any help to anyone, it’s also beneficial to me, too.” iBi

Mitch Forrest, MSW, LSW, CIRS-A/D is a family caregiver information and assistance specialist at the Central Illinois Agency on Aging, Inc. Call (309) 674-2071 during office hours, Monday through Friday, 8:30am to 5pm, to learn more about supportive services for working caregivers to help balance work and family life.