Caregiving for my father, Rev. Jesse Jackson, showed me real cost of care

It's an honor and a blessing to help care for my father as he valiantly manages progressive supranuclear palsy. It's also incredibly taxing mentally, emotionally and financially for our family.

Jesse Jackson Jr.

Over the past five years, along with every one of my siblings, I took on a new and difficult role: serving as a caregiver for my father, the Rev. Jesse Jackson. My caregiving experience has been brutal, formative and eye-opening.

It’s an honor and a blessing to help care for my father as he valiantly manages progressive supranuclear palsy (PSP). It’s also incredibly taxing mentally, emotionally and financially for our family. My little sister, Jackie Jr., has put her teaching career on hold to take on full-time care for our father.

Like the Jacksons, there are siblings across America who are splitting nights and weekends. There are spouses, sons and daughters like my mother, brother Yusef and sister, who have become full-time nurses. There are nieces, nephews and neighbors driving loved ones to dialysis and learning how to manage meds and feeding tubes. 

As we celebrate Thanksgiving, let us pray for the unpaid caregivers across the country. The best way to give them thanks is to recognize the scale of what they do, the cost they bear and the policy fixes that could support them.

November is National Family Caregivers Month. An AARP-National Alliance for Caregiving report found that about 63 million Americans – nearly 1 in 4 U.S. adults – provided ongoing care to an adult or child with significant health or functional needs in the past year.

For most, this is not a weekend favor. Family caregivers spend an average of 27 hours a week providing care, and nearly a quarter provide 40 or more hours. It’s a full-time job.

Estimates vary, yet the unpaid care provided by family members can be measured in the hundreds of billions of dollars each year saved in health care costs and the vast sums that would otherwise be spent on institutional care. As overinflated and expensive as health care is in the United States, it could be much worse if not for unpaid caregivers.

Trading income, career to care for loved one

A widely cited AARP estimate puts the economic value of unpaid family caregiving at roughly $600 billion a year. Even conservative estimates place the cost to caregivers in lost wages and benefits at about $522 billion annually. When families provide care, the country gets a service worth more than many industries, while the caregivers themselves get stress and exhaustion.

The financial hit is only part of the hardship. Caregiving often drives families into debt, forces reduced employment hours, factors into job exits and erodes retirement savings. Many caregivers spend a sizable share of their own income on household and medical costs for the person they love. Many trade career advancement, Social Security accrual and employer retirement benefits for the unpaid, indispensable work of keeping and caring for a loved one at home.

These burdens fall heavily on women who make up the majority of caregivers, and people of color and those of lower income who as caregivers more often experience the negative financial effects.

The mental and physical health consequences are also painful. Caregivers report elevated levels of emotional stress, depression and anxiety. A recent synthesis of studies shows higher rates of depression and emotional stress levels among caregivers. Many neglect their own health. Burnout and isolation are common.

The emotional weight of watching a loved one decline and managing complex medical needs takes a distinctive toll.

With an aging population – by 2030, projections suggest that more than 1 in 5 Americans will be over 65 – advancing solutions to allow people to age at home is critical to America’s economic stability. 

Paid family and medical leave would keep people connected to employers and income during intense caregiving episodes and reduce forced job exits. Employers can help with flexible scheduling, caregiver-friendly benefits and manager training so workers can ask for help without being penalized.

We owe dignity to caregivers

Caregiver tax credits or cash stipends for low- and middle-income families would blunt out-of-pocket costs and debt. Expanding Medicaid and Department of Veterans Affairs-funded programs that pay family caregivers a modest wage, now available in some states, recognizes caregiving as work and targets help where it is most needed.

Congress should bring that policy to the federal level.

It’s time to build a more robust community support infrastructure. We must increase funding for home- and community-based services, expand respite care so family members can get some sleep and tend to their own health, and broaden caregiver training programs so family members aren’t expected to perform medical tasks without proper guidance.

We should also invest in caregiver mental health services and peer support networks. Treating caregiver stress is preventive care for families and for our nation’s health system.

Morally, we owe dignity to those who keep loved ones safe at home. Pragmatically, supporting caregivers prevents hospital readmissions, delays costly institutionalization and keeps experienced workers attached to the labor market. Supporting family caregivers is an investment that pays America back in health, social stability and economic sense.

To every family caregiver reading this: Thank you and God bless you. You are not failing if you struggle. You are not selfish if you need a break. There are communities, services and public officials who want to help. This immensely difficult work can and should be a bit easier.

Caregiving is woven into American life. It is how we honor our elders, how we keep people with disabilities living in community and how we hold families together when health falters. Let our gratitude be more than words. Let it be policy that shows the breadth of our thanks.

Jesse Jackson Jr. served in Congress for 17 years, was a lead advocate for the Affordable Care Act and restored funding to improve health care access. He is now a candidate in Illinois’ 2nd Congressional District.