Curating Joy While Taking Care of Family
By Aisha Adkins, MPA, CNP
In the Beginning
It was an infamous false spring in Atlanta, 2013. The air was warm but there was a cold front on the way. My parents and I sat in the cold, stark white neurologist’s office – the fourth one after a series of misdiagnoses. The pale white man with icy blue eyes and receding red hair mumbled to himself while flipping through my mother’s medical charts. “It’s frontotemporal degeneration, or FTD. A form of dementia found in people under 60.” My dad had his thinking look on his face, furrowed eyebrows, hand holding his chin. “So what does this mean, doctor?” The doctor, who failed to make eye contact, told us there is no cure but that medication may help slow down the disease a bit. He went on to explain that she shouldn’t drive and couldn’t be left alone. As the heaviness of what he shared began to set in, my mother started to cry and I started to tune out.
That weekend, my father and I talked over dessert and decided it would be best if I left my job to stay home with my mother. This decision made the most sense since I was so early in my career in healthcare and my father had to maintain health insurance for both of my parents. That Monday, I gave my two-week notice at what was my first “big girl” job out of college, thinking I’d be out of commission for about six months or so.
It’s been over ten years and I have been a family caregiver ever since. Of course, I did not know I was a caregiver until about my 2nd or 3rd year. All I knew for a long time was that I was helping my mother with laundry, making sure she didn’t wander, as is prone to happen with people living with dementia.
How It Started vs. How It Went
Months went by and I began to realize that this time with my mom would not be temporary. What I thought would be a 6-month detour turned into a decade-long journey. A calling I thought would be taken on by another family member or taken over by a paid care worker, simply drew me in further and further. I assumed I’d be free to pursue the “ideal” millennial life at a fancy tech startup with unlimited PTO and a foosball table in the break room. Instead, I spent my days researching Medicare and adult diapers.
Over time, my days would evolve to include full-time cooking, cleaning, bathing, dressing, and medication management for my mother. As she lost mobility and could no longer walk or feed herself, I lifted her from the bed to the wheelchair, transferred her from the wheelchair to the shower. Ten years later, I would hold my mother’s hand as she took her final breath and transitioned from this earthly realm.
What I Didn’t Know
At the end of one of my mother’s regular check-ups with our family’s primary care provider at the time, our doctor, a balding Nigerian man, peered over his glasses and asked my father and me how we were doing. Surprised, we both said we were “hanging in there.” He went on to explain that people often experience caregiver burnout. I remember thinking to myself “who what?”
When I returned home, I consulted Doctor Google once again, looking for caregiver resources. This was the first time I’d heard of the term, and it opened a whole new world while also revealing a lot of gaps in caregiver support. As I looked for resources, I learned that most offerings centered older, white, affluent people caring for their spouses or much older parents. Where were the resources for millennials and people of color? According to a 2020 report by AARP, Black folx are more likely to be caregivers than their white counterparts, and millennial caregivers are growing in numbers every day. But resources and connections that take our culture and experiences into consideration were hard to find.
Turning My Pain Into Power
Caregiving can be lonely and isolating. I experienced FOMO watching my peers start their dream jobs, get married, buy homes, start families, and experience all the milestones of adulthood. I also had injuries and illnesses related to exhaustion from caregiving. Not to mention the grief of watching a loved one slowly slipping away. I became more and more hungry for resources that reflected my experiences.
When I couldn’t find what I was looking for, I started a blog and eventually had opportunities to write for other publications and began speaking about my experience. I even started my own organization to support BIPOC and LGBTQIA+ millennial caregivers. I now work for a policy advocacy organization that fights for better access to resources for family caregivers across the United States.[1] [2]
My projects didn’t get rid of the pain I experienced, but they did provide community and the feeling of being supported and understood. Controlling what I could control created space in my brain to get my priorities in order. After years of anger and resentment, I had a revelation: I only get one set of parents and so being present with them should be my highest priority. Jobs, relationships, concerts, and other things I felt I was missing would be there, but my parents would not. This realization allowed me to be fully present with my family, find some joy in the midst of really challenging times, and experience my faith in a whole new way.
Hope and Help
While apps and resources that center Black caregivers are still hard to find, there are websites and spaces that can help make the journey a bit easier. Finding the right therapist can make all the difference. Therapy for Black Girls, Therapy for Black Men, Inclusive Therapists, and Open Path Collective are great places to find affordable, culturally aware therapists, counselors, and psychologists. For support for Black caregivers, many disease-specific groups like the Alzheimer’s Association have resources and groups dedicated to Black caregivers. Additionally, nonprofits like Hilarity for Charity have support groups for Black caregivers, as well as respite care grants to give caregivers a break. For financial support, tapping into local grants or mutual aid programs can be of help. If you are interested in taking action, organizations like Caring Across Generations are eager to connect with family caregivers to learn more about their experience and U.S. policies can help improve them.
You may not be able to fix what’s happening with the person you are caring for, but with a little hope and help, the journey can be an easier one.
Aisha Adkins, MPA, CNP is an Atlanta-based caregiver, writer, thought-leader, speaker, and organizer who is passionate about building an equitable, inclusive, and comprehensive public health and care infrastructure using media, storytelling, and culture and policy change. Her versatility has enabled her to publish works both in academic journals and popular publications. When she is not trying to affect positive, systemic change, she enjoys classic film, live music, and the great outdoors. She is also an aspiring tea connoisseur.
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