When Sylvia Wilson’s mother, Betty Hill, fell ill in her late 50s, Wilson faced a difficult choice common to many families: place her mother in a nursing home or provide care at home. Recalling how her own mother had cared for her during childhood health challenges, Wilson chose to become her mother’s primary caregiver. Starting in 2003, she devoted the next two decades to tending to Hill as her health deteriorated.
Wilson’s experience mirrors that of millions of family caregivers in the United States. According to a 2024 report by AARP and the National Alliance for Caregiving, 63 million Americans provided unpaid care to family members or friends, contributing an estimated 49.5 billion hours of labor valued at over $1 trillion. Despite their significant role, many family caregivers face physical, emotional, and financial burdens with little formal support.
Wilson’s caregiving responsibilities increased over time as her mother battled multiple chronic conditions, including diabetes, high blood pressure, congestive heart failure, and kidney failure. By 2019, after Hill lost the ability to walk, Wilson left her job as a school bus driver to provide intensive full-time care, including wound care and administering medications. This level of high-intensity care is more common among Black caregivers, with 55 percent providing such services compared to about 45 percent of caregivers overall, according to a 2025 AARP report.
The prolonged stress took a toll on Wilson’s health. In 2024, during a routine medical visit, she was diagnosed with atrial fibrillation, a serious heart rhythm disorder linked to chronic stress. Medical experts highlight that the ongoing demands of caregiving can have profound impacts on the cardiovascular and immune systems.
Wilson’s physical health decline also affected her financial security. When she applied for Social Security Disability Insurance, her claim was denied because her caregiving responsibilities resulted in gaps in her workforce participation. Additionally, her projected Social Security retirement benefits were reduced due to fewer years of earned income. “It hurts, but there’s nothing you can do about it,” Wilson said regarding the denial.
Recognizing these challenges, lawmakers have proposed several measures aimed at supporting family caregivers. The Social Security Caregiver Credit Act would grant retirement credit for up to five years to individuals who left the workforce to provide care for at least 80 hours per month. Another proposal, the Credit for Caring Act, would create a federal tax credit of up to $5,000 annually for eligible caregivers. Senator Ed Markey, a key advocate for these policies, emphasized the need for systemic support, drawing from his own family’s experience caring for a parent with Alzheimer’s disease.
“These caregivers are heroes, but heroes need help,” Markey stated. His “Caring for Caregivers” agenda includes initiatives to expand access to respite care and other resources. Several related bills are currently under consideration in Congress, although prospects for swift passage remain uncertain amid other legislative priorities.
Caregiving, often described as “real work,” plays a critical role in sustaining the health and well-being of millions of older adults. Yet the experiences of caregivers like Wilson underscore the urgent need for policies that acknowledge and mitigate the personal sacrifices involved in this essential labor.