Honoring the ‘Invisible Work Force’ of Family Caregivers

National Family Caregivers Month provides an opportunity to learn more about the 32 million Americans caring for an adult loved one. Family caregivers serve as chauffeur, chef, nurse, coach, personal assistant, and advocate. They form an “invisible work force,” with many balancing a full-time job work with private care responsibilities. They spend, on average, 30 hours a week completing care tasks, yet 80% of family caregivers receive no compensation for care, even though they spend nearly $7,000 per year on out-of-pocket expenses related to caregiving.

The costs of care are important to keep in mind as debate continues over adopting a federal paid Family and Medical Leave benefit (FMLA). In July, Massachusetts became the 6th state to adopt laws for paid family leave. Under the new state law, an individual can take up to 12 weeks of time off work to care for a newborn or newly adopted child or for the care needs of a spouse or domestic partner, parent or in-law, or grandparent.

Nationally, though, there is little consensus about what a federal paid leave benefit should cover. Some suggest that paid leave benefits (funded either by employers or public programs) should cover what unpaid FMLA currently does: parental leave, personal medical leave, and care for a family member with a major medical issue. Others support a much narrower purpose: parental leave to care for a new child. Limiting the benefit to parental-leave is attractive to lawmakers because of its clear beginning and end. Other forms of leave, such as caregiver leave, are unpredictable and variable.

Although family caregiving can take many paths and forms, we do know about several common patterns. Reflecting on these may help us think with more specificity about the kinds and lengths of caregiving leave families often need:

1. Acute, Short-Term Periods of Care with Full-Time Paid Support

Michael* was diagnosed with lung cancer two years ago. After the initial diagnosis, he underwent surgery followed by chemotherapy and radiation. His spouse served as his primary caregiver during this intense care window that lasted several months. He entered remission, and life went back to normal levels of activity and independence.

A year later, the cancer returned, and he enrolled in hospice home care.

His spouse suspended her freelance work as a horse-riding instructor in order to care for him. This choice stopped her income stream for the final five weeks of his life. She administered medications, assisted with bathing and meal preparation, coordinated his visit schedule, and simply relished spending precious time with him.

Cancer, knee or hip replacement, and stroke are all health crises that require a short-term, acute period of full-time care until recovery or death. Amy has written here about one recommendation to use hospice enrollment as a trigger for paid family leave; however medical leave can also lead to recovery. Up to 12 weeks of full-time paid leave would have helped Michael’s spouse during both care windows.

2. Long-term Care with Partial Paid Support

Jenny is in her early 90’s, unable to walk without assistance and becomes confused easily. Daily visits by her three children make living at home possible for her. One daughter comes by in the early morning before work to get her up, showered, and in her recliner for the day. Her son stops by over his lunch hour to take her to the bathroom, make a snack, and check in. In the evening, her other daughter readies her for bed.

All three children work full-time. They balance this schedule without needing time off, although they are often exhausted and in need of respite, especially when there are needs that arise in the middle of the night. And, one child could not handle all three visits without employing paid help, taking time off, or requesting flex-time at work.

Dementia, debility, frailty, and Alzheimer’s disease are all medical conditions marked by continual, slowly progressing cognitive or physical decline. This care journey can last for years, even a decade. A paid leave benefit that provides a percentage of salary-replacement could work well for one or all three grown children. Working fewer hours each day, they could spend more time with their mother without the added stress of full-time work demands or loss of wages.

3. Long-Term Care with Intermittent Paid Leave

Arnold lives in an assisted living facility. Due to neuropathy in his legs, he falls about once a year, which leads to a cycle of rehabilitation and recovery that often includes hospitalization and skilled nursing care that leaves him weaker than before the fall. Arnold’s two children work full-time and live several hours away. When a crisis happens, they take off a week of work to come to town, assess the situation, and advocate for their dad with the many health care professionals in his life.

A stroke, a fall, an infection, pneumonia, and congestive heart failure are all medical conditions marked by a slow decline punctuated by crisis events. A paid leave program that provides 5-7 days of paid leave that could be repeated several times a year could provide financial support for these periods away from work. Each caregiver could be eligible for short-term leave and thus enable multiple caregivers, say the two siblings of an ailing parent, to be together when a crisis happens.

Former first lady and family caregiver advocate, Rosalyn Carter said, “There are four kinds of people in this world: those who have been caregivers, those who currently are caregivers, those who will be caregivers, and those who will need caregivers.”

We may not all need paid parental leave but family leave is almost inevitable. The common patterns of caregiving we note in this piece should inform our policy-making, helping us pinpoint distinct purposes and triggers for paid caregiving rather than excluding it from our policy design.

Rev. Amy Ziettlow is pastor of Holy Cross Lutheran Church and author (with Naomi Cahn) of Homeward Bound: Modern Families, Elder Care, & Loss and Rachel Anderson is the Director of Families Valued at the Center for Public Justice and author (with Katelyn Beaty) of A Time to Flourish: Protecting Families’ Time for Work and Caregiving.

*All names and identifying details have been changed to protect the privacy of individuals. The examples are drawn from families that Amy has served as a parish pastor and chaplain in hospice care.