When I was born at just 24 weeks, weighing a mere 1 1/2 pounds, my mother was thrust into new roles as mother and caregiver. In addition to the startling rates of maternal mortality among Black people, Black babies are 50% more likely to be born prematurely than White babies. Not only would she learn to perfect the discontinuous diaper change, she quickly had to learn the delicate skill of changing a tracheotomy. Her unpaid maternity leave extended from a few short weeks to a few long months as she cared for her medically fragile newborn. The world she and my father had dreamed of since their days as high school sweethearts was turned upside down as they embarked on a brand-new care journey.
Throughout my mother’s life, she would continue to be my caregiver as I underwent more than 40 surgeries (and counting) and as my father recovered from rupturing both patella tendons, a Type-2 diabetes diagnosis, two strokes and a heart attack. Although my father had always been active and relatively health-conscious, heredity, social determinants of health and an unexpected accident put him on the receiving end of care in his mid-30s.
Dementia: A Devastating Diagnosis
In the middle of my father’s health crises, my mother began exhibiting symptoms of memory loss and behavior changes. Seven years after my father’s first stroke, and when I was 27, my mother was diagnosed with Frontotemporal Dementia, the leading forming of dementia in adults younger than 60. Upon her diagnosis, I left my first full-time job out of undergrad and I became her full-time caregiver.
‘Black women have a long and hard legacy of caring for others in the United States.’
As I cared for my mother and, periodically, cared for my father, I continued encountering health challenges of my own, including being diagnosed as pre-diabetic. During my role as a caregiver, I found myself stress-eating less nutritious foods and exercising less frequently. It was clear to me, however, that I needed to make a significant change if I wanted to continue caring for my mother.
While I lost 80 pounds in three years, health issues stemming from my premature birth continued to disrupt my caregiving responsibilities. Unable to afford health insurance without an income, I have since developed additional health conditions due to caregiver stress, which for years have compounded existing unmonitored conditions.
Back Women Have Always Cared
Black women have a long and hard legacy of caring for others in the United States, from forced care by way of the enslavement of African people to the poverty wages earned by paid care workers today. The care roles historically held by Black, Latina and immigrant women like my paternal grandmother and maternal step grandmother do not end with the close of the workday. Many return home to care for older parents, disabled children or other family and community members. We are often living and breathing care.
The Risk of Generational Poverty
The ubiquitousness of care in the Black community gives me pause. While some view caregiving as an act of reverence for one’s elders, the responsibilities of caregiving often lead to an inability to create generational wealth. With the savings of older adults drained by healthcare costs and many younger caregivers unable to save due to lost wages, paying out of pocket for care expenses, and healthcare for themselves, the cycle of caregiving might very well contribute to generational poverty.
According to the Center for Workforce Inclusion, “those caring for loved ones with dementia spend an average of $62,000 a year in out-of-pocket expenses, which is 81 percent higher than the average spending on patients without dementia.”
'Those caring for loved ones with dementia spend an average of $62,000 a year in out-of-pocket expenses,’ which is the majority of my salary.
Personally, that means nearly the majority of my current annual salary. With mounting debt, unpaid student loans and ongoing healthcare costs for myself and my parents—both of whom now live with different forms of dementia—I contemplate whether or not having a family of my own one day is wise. Though I love children and believe I would make an excellent mother someday, I fear that I will eventually saddle my children with the burden of unpaid caregiving in a society that continues to devalue caregiving and the lived experiences of Black people.
One Story, One Solution
My story is by no means unique. There are more than 53 million family caregivers in the United States. Many of these caregivers are disabled or living with chronic conditions that may necessitate care in the future. Unfortunately, our care infrastructure is broken. Home- and community-based services are neither affordable, accessible, nor equitable, particularly for people of color. Increasing access to services like in-home care, respite, adult day centers, home modifications and transportation, and mandating policies for paid leave and childcare, would allow more women of color to continue earning a living, while also ensuring their loved ones are well cared for and safe in their homes.
Once we decide as a nation that care across the ages, from birth to death, is a priority that must be well-funded and whose workers must be well paid, we will be one step closer to realizing the reality of a just, equitable and fair society where everyone can live and age in their homes and communities with the dignity and respect they deserve. We must take swift legislative action to mandate access because time is running out and care can’t wait!
Aisha Adkins, MPA, CNP, is an advocate, storyteller, care partner and thought leader. She also works with Caring Across Generations as a constituency organizer on Cherokee Nation lands in Atlanta, GA.