By Real World Health Care Editorial Staff  |  May 31, 2023

Two Full-Time Jobs: The Challenges of Being a Family Caregiver While Working

Acting as a family caregiver can be a challenging, full-time job, and it can be even more challenging if you already have a full-time (or even part-time) job. The struggle is a common one: An estimated 60 percent of family caregivers are employed, and two-thirds have had to make some adjustments in their work-life balance because of their caregiving role.

Lisa Winstel

Lisa Winstel, Caregiver Action Network

“One of the most common problems facing family caregivers is trying to juggle their job responsibilities with their caregiving responsibilities,” says Lisa Winstel, interim CEO, Caregiver Action Network.

Caregiver Action Network (CAN) is the nation’s leading family caregiver organization working to improve the quality of life for the more than 90 million Americans who care for loved ones with chronic conditions, disabilities, disease, or the frailties of old age. It provides education, peer support and resources to family caregivers across the country, free of charge.

Pandemic-Driven Balances Fade with Return to Work

Family caregiving skyrocketed during the COVID pandemic, as otherwise healthy family members fell ill, elders moved in with their children to avoid the spread of disease in nursing homes, and support organizations paused or scaled back on in-person services. However, according to Winstel, the pandemic had a rare silver lining in that work-from-home mandates helped caregivers find a better balance between working and caregiving by allowing them to spend more time at home caring for their loved ones.

“The return to work was a moment of crisis for caregivers because that balance became more difficult again,” Winstel says.

One of CAN’s strategies for advocating for working caregivers, says Winstel, is to help companies find ways to better support and accommodate their needs. Often, this can be done at little or no cost to the employer, by allowing employees to continue working from home, for example. For employees who can’t work at home, employers can allow them to take short breaks and provide easily accessible locations for private, care-related phone conversations and telemedicine appointments with their loved one and health care providers. They can also allow employees to use their paid sick leave time for caregiving responsibilities like doctor’s appointments or participation in clinical trials.

“We need to normalize the conversation around caregiving,” Winstel says. “Caregivers should feel safe telling employers about their situation and asking for accommodations without being penalized, passed over for promotions, or treated differently by management and co-workers. Employers should recognize the worker attraction and retention benefits of providing a supportive work environment that allows people to manage their loved one’s care.”

Can I Afford to Leave My Job?

Winstel says it is natural for caregivers to consider quitting their job to provide care for a loved one, especially if they cannot afford to hire a professional caregiver. She encourages caregivers to carefully consider the pros and cons of leaving the workplace, noting that it can have both short- and long-term financial implications.

In the short-term, it can make it even more difficult for caregivers to help pay for their loved one’s out-of-pocket costs related to prescriptions and medical supplies (caregivers shoulder an estimated $7,000-$10,000 in costs for items not covered by insurance). In the long-term, leaving a job can reduce social security earnings, resulting in lower payments upon retirement.

“What if, instead of tagging earnings as ‘zero’ during time away from work for caregiving, the government froze social security earnings at that point in time?” she suggests.

Winstel cautions caregivers from assuming that they can be paid to provide care for a loved one. While it may be possible through certain Veterans Administration and Medicaid programs, the process is complex, requires a lengthy process and must be done following strict tax rules.

To help caregivers manage financial and legal issues, CAN offers a variety of free, online tools and operates a help desk to provide caregivers with support and navigation for the challenges they face.

Creative Programs Keep Caregivers Working

CAN works at the policy level to drive changes that will financially and practically benefit caregivers and the loved ones they care for. It also partners with other organizations to develop creative solutions. One example is its work with the Administration for Community Living (ACL) as part of a cooperative program called Community Care Corps. The program seeks to foster innovative local models in which volunteers assist family caregivers, older adults and adults with disabilities with non-medical care in order to maintain their independence.

One of the models under development is a chaperoned rides program in which volunteers drive patients to medical appointments, escort them to the provider’s office, get them to the pharmacy afterwards, and deliver them safely back home. Winstel says this type of service can relieve a tremendous amount of stress from a family caregiver who may have difficulty getting time off from work to ferry their loved one to multiple appointments.

“CAN’s goal is to improve the quality of life for the growing number of family caregivers in the United States by reducing their day-to-day stress and financial distress through practical solutions and support,” Winstel concludes.

Categories: Caregiving
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