Family Caregiving—A Public Health Crisis

| By Kim Gilhuly |

This last year was the hardest one of my life. And I’m writing a blog about it because my personal experience is a public health issue.

In the midst of taking vacation time off to help my 80-year old mom move into a retirement community, the St. Louis Dispatch released an article about the health impacts of caregiving for elderly parents. The article notes that adult children who are caring for elderly parents have a myriad of poor health outcomes themselves—stress, higher rates of chronic disease, social isolation, and economic harm.

I relate. My mom’s move came about 6 months after my father died after a lightning-quick struggle with stage 4 lung cancer. During the last year, I have experienced everything covered in the National Academies of Sciences, Engineering, and Medicine (NAS) report, Families Caring for an Aging America: lack of exercise, poor eating habits, lack of sleep, incredible stress, extreme difficulty navigating our insane medical care system, and lack of support in how to set up my mom’s new life. Tearfulness, depression. My brother, in commenting on the difficulty of the last year, said, “I see now why it is very common that people die within one year after their spouse dies.”

The NAS publication cautions that our society is dependent on family caregivers. Nearly 14% of the US adult population has been a caregiver for an aging adult in the last year, and that is a role that typically lasts 5 years or more.

So. My personal experience raises two public health issues. The first—as noted—how we need to get on it to deal with the dearth in support for family caregivers, or train and pay (and pay very well!) an army of caring people to help our aging population. Policies like the Domestic Workers Bill of Rights in New York and 5 other states newly support domestic workers’ rights to minimum wage, overtime pay, and other worker protections. The organizing efforts of the National Domestic Workers Alliance brought together family caregivers alongside the people they care for—people with disabilities, families with young children, and elderly people like my mom. Both domestic workers and the people who pay them understand that better working conditions will help ensure that our families are well cared for.

In addition to paid caregivers, sometimes we need to take time off to provide care directly. Only four states—California, Rhode Island, Washington, and New Jersey—and the District of Columbia have Paid Family Leave policies to help people take extended time off to care for their families. My own state of Massachusetts tried to pass a Paid Family Leave law earlier this year, which would have required employers to offer up to 16 weeks of leave for family care, with a portion of salary paid out of a state fund. Unfortunately it got blocked in the State House, so like the majority of the US, I still do not have access to these benefits.

So instead I took vacation time to take care of my mother. I can tell you, my time off was no vacation.