The members of Holy Cross Lutheran, the congregation I serve in Decatur, Ill., gather for worship at 9:15 a.m. every Sunday. The pews are filled with elder caregivers. Their love for their families is great, but the burden of care is great too. Many juggle full-time jobs with private care responsibilities.
While congregations like ours offer volunteer support and prayer for elder caregivers, it’s time we start advocating for paid family leave too.
The United States is decades behind many parts of the world in providing much-needed paid family leave. Bipartisan support already exists for the current expression of the federal Family Medical Leave Act (FMLA).
Since 1993, FMLA has provided up to 12 weeks of unpaid, job-protected leave for more than 100 million U.S. citizens. The act covers a wide array of individuals through vastly different seasons of care: an employee recovering from an illness, parents of a newborn or newly adopted child, or a family caregiver supporting a seriously ill loved one.
The United States is decades behind many parts of the world in providing much-needed paid family leave.
Movement toward a federal, universal paid leave act is afoot. The FAMILY Act (Family Medical Insurance Leave Act) proposed by Sen. Kirsten Gillibrand, D-N.Y., and the New Parents Act proposed by Sen. Marco Rubio, R-Fla., are currently being considered.
In writing the Center for Public Justice report “Called to Care: Honoring Elders and the Family Care Journey,” I learned that paid family leave can best help those in the “deep end” of the caregiving journey. (Read the report to learn about the “roller coaster” and “marathon” forms of family care and what type of paid leave best benefit those caregiving journeys).
“Care recipients tend to live relatively independent lives until an acute crisis happens, such as a cancer diagnosis, a car accident, or a fall,” reads the report, produced for the center’s Families Valued initiative. “This care journey can last a few weeks to several months, and ends with death. Hospice is often associated with this type of care because it serves patients in the final six months of life.
“Approximately 1.43 million Medicare beneficiaries receive hospice care each year. Family care tasks can require a high level of skill, such as dressing changes for wounds, bathing, catheter care, and managing opioids and other pain medications.”
When I reflect on the deep end of care and the difference that paid family leave can play, I think of Melvin and his daughter, Barbara (last names withheld for privacy).
Melvin was a longtime member of Holy Cross. In his mid-80s, he walked with the assistance of a cane. He received ongoing treatments at a local pain clinic that included radiation treatments on the nerves in his lower back. He had an untreated tumor on his kidneys that, for several years, showed little to minimal growth.
After a radiation treatment in November 2017, he didn’t bounce back as usual. Barbara knew things were bad when Melvin didn’t want to go to church. She took him for a scan, and “he was just full of it. Cancer everywhere,” she said. He went home to be admitted to hospice.
Barbara was working a full-time job at an independent insurance agency that fall, but everything changed with the cancer diagnosis and hospice admission. She said her boss told her, “You need to be with your dad.” Although he only had two employees, and thus wasn’t legally required to provide family leave, Barbara’s boss gave her as much time as she needed—and the leave was paid.
“That month was one of the hardest of my life, but I wouldn’t trade it for the world. It was an honor.”
Having that time with her dad, without the added strain of not earning a paycheck, was truly a godsend, Barbara said. “I don’t think I slept for the whole month of December,” she added. “He went from walking to using a wheelchair to being bed-bound. I had to care for his catheter and manage his pain medication. I was up all hours of the day and night. It was all new and all overwhelming.”
On Dec. 23 of that year, Melvin fell asleep and didn’t wake up again. His family gathered around him and sat vigil until his death.
“That month was one of the hardest of my life, but I wouldn’t trade it for the world. It was an honor,” said Barbara, reflecting on her time as a family caregiver.
I made visits to his home that month. Congregation members made treats for him, visited, wrote cards of encouragement and prayed. But the precious time Barbara had with her dad was made possible by paid family leave, a wonderful secular support for honoring our elder caregivers, and one that should be available to all people, not just those with generous employers.
For Melvin and Barbara’s sake, and for the many parishioners I serve just like them, I am now an advocate for paid family leave.