Editor’s note: The following article is an op-ed, and the views expressed are the author’s own. Read more opinions on theGrio.
As a Civil Rights icon, Rev. Jesse Jackson, Sr.’s legacy shines as a beacon of inspiration across a rainbow coalition of people. Like other prominent leaders, the details of his life straddle the intersection of complicated, contradictory and compelling. As a physician and as a daughter still mourning the loss of my father, it is his dying that resonates most deeply with me.
After Rev. Jackson initially disclosed his Parkinson’s Disease diagnosis in 2017, he and his family later learned he was actually suffering from progressive supranuclear palsy. There is no cure for this rare disease, and people often develop dementia as they also lose the ability to talk, walk, and swallow. As his disease progressed, his family soon experienced the profound exhaustion of providing constant care. His son, Jesse Jackson, Jr., transparently characterized caregiving as “brutal, formative and eye-opening.” He described how one of his sisters put her teaching career on hold to take on full-time care for their father. His mother, sister, and brother had to learn how to provide nursing care. They still needed family and friends to make medical appointments and to help with feeding tubes and kidney dialysis.
Beyond his enduring legacy, Rev. Jackson’s death should make us stop and realize that we need better infrastructure and support for caregiving. Too many of us are struggling to honor our elders with dignity as they reach the final pages in the last chapter of their lives. Congress can lead by approving the bipartisan Credit for Caring Act, which would provide up to $5,000 in tax credits annually and a much-needed financial reprieve from caregiving burdens.
We also need greater access to training programs about caregiving and educational information about chronic illnesses like dementia. Approving flexible work schedules for caregivers to attend medical appointments would significantly decrease stress plus increase productivity. And improving access to mental health services could help caregivers better protect their own well-being.
Because watching someone who always seemed larger than life begin to wither and fade away is an excruciating pain that persists far beyond the funeral, the first Father’s Day without him and all the reminders of moments you can never share. When my father finally succumbed to dementia, it had only been once in the months before his death when he recognized me as “his baby girl, the doctor.” While I continued to work long and difficult nights with critically ill babies in the neonatal intensive care unit, I no longer had my confidante to call and share my worries as he prayed with me and encouraged me to “Keep hope alive.”
Like the Jackson family, I know that the burdens of caregiving are crushing and unrelenting. There is no paid time off. There usually isn’t even paid time on. My mother, a retired nurse, faithfully and lovingly attended to my dad practically 24 hours a day. My brother and sister-in-law took on tremendous amounts of responsibility in coordinating our dad’s care. Our family, friends, loved ones, and church members never failed to step up and help. When he became seriously ill, I used the thousands of dollars I had been saving for a down payment on a home to afford the specialized healthcare he needed – healthcare not available in my relatively small hometown. This also meant my mother had to travel hours to visit my dad in the hospital, and it left us with a healthcare bill that his military benefits, health insurance, and Medicare combined were not enough to pay. We later had to tap into money my father had saved to support my mother after he died, and we knew how fortunate we were that he had made a financial plan years before he ever became sick.
For many Black families that are already managing complex and precarious situations, caregiving disproportionately upends their lives, their careers and their own health, especially for Black women like my mother. It was hard watching what the stress did to her. I wasn’t surprised that even with the fame and wealth of Rev. Jackson’s family, they could not shift the reality that the financial, physical, mental and emotional costs are incalculable. His death proves that the challenges of caregiving cut across socioeconomic status, racial identity and political ideology to affect almost every family, including mine. As a nation, there should be and can be better ways to care.
Although my father was not famous like Rev. Jesse Jackson, he was still my hero. Yes, I am an unabashedly proud “Daddy’s girl.” I know that in a world that falsely believes the narrative that Black men are absent from their children’s lives, their identities as Black fathers absolutely mattered too. Rev. Jackson said, “It is in struggle and service with our brothers and sisters, individually and collectively, that we find the meaning of life.” Those words align with values my father instilled in me. I may not run like Jesse, but I can take the lessons he and my father taught me to help improve the lives of others. Advocating for better support of the essential caregiving that families provide is one way I can honor both how they lived, and how they died.
Valencia P. Walker, MD, MPH, FAAP, is a practicing neonatologist and Public Voices Fellow of The Op-Ed Project in partnership with the National Black Child Development Institute. As president and co-founder of the nonprofit organization, Birthing the Magic Collaborative, she champions the agency of Black families to navigate their pregnancies and birthing experiences with confidence and knowledge rooted in community, culture, and evidence-based health care. Dr. Walker also previously served as president for the Association of Black Women Physicians, a nonprofit organization dedicated to diversifying the physician workforce, advocating for better health in historically excluded communities, and promoting health justice.
