In 2012, I was a twenty-something full of idealistic optimism. Proud to tie up my gold and navy hanky and dawn my uniform to work at my first real job after graduating undergrad, I had hope that I would change healthcare from the inside out, climb from the bottom up.
A few short months after beginning my position as a patient services coordinator (which is a fancy title for front desk worker) at a major healthcare organization in Atlanta, I received news that would abruptly and dramatically change my career plans. And my life.
In the spring of 2013, my mother was diagnosed with Frontotemporal Dementia, a rare form of dementia affecting patients under sixty years of age. Although my mother had been showing the signs – severe changes in personality and mood, obsessive-compulsive behavior and, in her case, short-term memory loss – the diagnostic process took many months and many thousands of dollars.
Shortly after receiving her fourth and final diagnosis (previously misdiagnosed with stress or depression), I left my shiny new job after 7 months to take care of her. My family needed me and I was ready to step in, at least for a little while.
It has been nearly seven years. I am still caring for my mother. I don’t sleep much, and what sleep I do get is overrun by nightmares of flashbacks to close-calls and prophecies of future emergent events. But this story is not uncommon among many caregivers. It is a universal, silent struggle so many of us face as we helplessly watch our loved ones deteriorate, all while trying to navigate the overwhelming and obstacle-laden systems of healthcare and long-term care in America.
Early in my journey, I assumed we would tap into all of the resources available to hardworking Americans who paid into the system and contributed to the strong fabric of this country’s ecosystem. It did not take long, however, to discover that long-term care is exorbitantly expensive and not so easy to access.
As I researched options for my family and support for myself, I also noticed the absence of accessible and culturally competent support options for marginalized millennial caregivers. So much of the content in pamphlets in medical waiting rooms around the country focuses on spouses caring for loved ones over the age of sixty-five. An overwhelming number of support groups are predominated by upper-middle-class, White, cisgender, older Americans. I often left these environments feeling unseen, unheard, unrepresented.
So that is when I decided to speak up. I began writing about my experience as a marginalized millennial caregiver. As a young, Black woman my caregiving experience (and subsequent solutions) looks and feels different than the person for whom care support is typically designed. Instead of hiding assets and preparing for retirement, I am trying to establish credit and continuing my education. Instead of planning visits with grandkids, I am trying to find a community of other unmarried, childless folks to make sure that I don’t have to grow old alone.
Thankfully, I am not the only one who has noticed the gaps in care support. Organizations like Caring Across Generations, Diverse Elders, and SAGE are advocating on behalf of the needs of caregivers of all ages, backgrounds, races, religions, orientations, identities, and status. I even started an organization, Our Turn 2 Care, where we connect marginalized millennial caregivers to information, resources, and each other.
Before my mother’s diagnosis, I cannot say that I was necessarily a political person. I voted but did not know much about policy. When people began taking to the streets in protest of the shootings of unarmed Black men and boys, the unfair treatment of women in the workplace, and climate change, the feeling of isolation inherent in caregiving was magnified exponentially. I tuned into the live broadcasts of my friends’ social media feeds as they streamed the presentation of collective anger. I felt dually helpless, unable to make my mother better and also unable to show my support for so many causes about which I care very deeply.
But connecting with individuals and organizations that have shared their platforms and allowed me to share my caregiving journey has made me feel less isolated and more involved. I finally found a way that I could make a difference. And though my mother may not always understand what I am doing or comprehend what I am trying to accomplish, I know that she would be proud to know that I am using the gifts and talents I was given to help others. The education my parents helped to provide, the examples of benevolence they showed, have contributed to my own passion for helping to leave this Earth better than when I arrived.
Caregiving allowed me to find my platform, the cause for which I would fight. It has not been an easy journey, but I am hopeful that the collection of caregivers’ voices will rise up, demanding stronger support, more opportunity, and true dignity for ourselves and the ones we love.