The year is 2009. The U.S. economy is bad. I just graduated with a bachelor’s degree in social services and was eager to change the world, but had trouble finding a stable job. Like many millennials, I moved back in with my parents following graduation and some tension ensued. My mother and I argued over the remote control and recipes. I registered with a temp agency and worked in retail.
The following year, I got a full-time job in healthcare, which I thought would ease some of the stress at home. But instead, the tense mother-daughter moments increased. My mom was having mood swings and showing signs of memory loss. She agreed something was off, so my parents and I went to the doctor to find out what was going on. The first neurologist told us she was stressed and prescribed some anti-anxiety medication. We wanted another opinion. Two years, two more specialists and tens of thousands of dollars later, we finally received a diagnosis of Frontotemporal Dementia (FTD).
Frontotemporal Dementia is the leading form of dementia in people under the age of 60. My mother was diagnosed at 57 with the terminal, progressive and rare disease. African Americans are about twice as likely as Whites and Hispanics to develop dementia. By 2013, my smart, beautiful, vibrant mother had become a part of these startling statistics.
It also became clear that it was no longer safe for my mother to be home alone, and we knew that I would be the one to stay home with her. Not long after her diagnosis, I handed in my resignation letter. It was undoubtedly the right thing to do for the woman who had raised and supported me, but it was bittersweet because I was finally on what I hoped was a more promising career path (though underemployed given my education and experience). I loved my family and was dedicated to helping in any way I could, even though I was concerned about the impact this decision could have on my finances and ability to find employment in the future.
After about a year of caring for my mother, with student loan debts looming, I attempted to put myself back on the job market. Startups were all the rage and I was determined to snag one of those perk-heavy positions like so many of my friends.
I submitted hundreds of resumes, landed a handful of phone interviews and ended up with one in-person meeting. When the healthcare startup asked me why I was interested in working with them, I shared my skill set and innocently explained how the flexible schedule and ability to work from home was ideal, given my responsibilities as a caregiver. The interviewers were impressed both with my demonstrated ability to do the job and my dedication to my family. All signs pointed to “yes,” but a week later, I received a call saying that I “did nothing wrong,” and was an “excellent candidate” but didn’t get the job.
Devastated and confused, I had my suspicions that the decision ultimately came down to my race, my status as a caregiver or both. Desperate for employment and a “normal millennial life,” I kept applying. I found a great work-from-home position at another startup. The feedback on my writing was “the best writing sample [they’d] ever seen.” But the white, female owner of the boutique social media firm informed me that, while I was an ideal choice, she could not hire me. She then referred me to a “friend” of hers who was hiring for a similar position. This friend was Black. I was insulted.
The repeated rejection did very little for my confidence or my finances. Meanwhile, the realities of a dementia diagnosis began to set in and watching my mom deteriorate daily hurt my health. While working for a children’s clothing retailer, stocking shelves until nearly 2 a.m., I developed hives and my lips and eyes swelled. Not only did I not have the money to deal with current crises, but I also had no savings, no 401k, no social security. Providing full-time care for my mother meant that I had no time to attend job fairs or networking events. And even if I was hired, I knew that as a Black woman in America I would face a 72% wage gap.
13% of unpaid family caregivers are Black, with that number expected to triple by 2030. Black folks experience a 57% greater burden while caring for an ailing or aging loved one, compared to their white and Asian counterparts. We are less likely to have long-term care insurance, but more likely to experience negative health outcomes affected by social determinants of health.
Imagine what it would be like to take the necessary time to care for a loved one without having to pick, choose and pray about which bill to pay and which prescription to go without? Would it not be a great relief to know that staying at home with your sick child wouldn’t jeopardize your job? What if you didn’t have to panic every month when you have to decide between rent and medication, lights and car note, or healthy food and affordable food?
These are questions millions across America ask themselves and policymakers every day. In 2015, I discovered Caring Across Generations, a campaign dedicated to making real change for family caregivers and paid care workers across the country — and in a way that is equitable and sustainable. They’ve made space for a broader movement of caregivers — a diverse one where people come together not only to support one another, but also to organize, to demand change and to fight for solutions that put caregivers and their experiences front and center.
Universal Family Care, a new policy proposal from Caring Across Generations would allow employees up to 12 weeks of paid family leave and mandatory long-term care support. This revolutionary approach would allow people to take the necessary time off from work to care for a loved one without sacrificing income or fear losing their job. It is a policy that would work similarly to Social Security in that everyone would pay into it and everyone would be able to benefit from it. The measure supports employees’ needs on a continuum of care, whether you are a single mother who needs time off to care for her son as he battles childhood leukemia, or a married father of three whose mother has moved in with their family following a debilitating stroke. And it has broad support — but far and away the most from Black Americans, 90% of whom support it (compared to 73% of whites), according to a poll Caring Across Generations conducted with the Women’s Alzheimer’s Movement.
Care partners are faced with unexpected challenges and difficult decisions, but we keep pressing on and do what we need to do to care for the people we love. During my journey, I’ve become an advocate for caregivers and dementia patients and started graduate school in 2018 to study public administration, nonprofit management and public health. In the absence of Universal Family Care, I will graduate with more debt and uncertainties that hang in the balance. I’ve been unable to date, much less find someone to marry, so who can I share the good times with ... and who will be there to care for me if I develop dementia someday? How will I navigate life in a capitalist society with abysmal credit? Will I end up homeless as an older adult because I haven’t worked enough to build up my social security or pay into Medicare? This is certainly not the future my enterprising, ambitious, entrepreneurial parents envisioned for me.
But, providing care for my mother has also helped me to find my purpose and my people: to fight for families, family caregivers and paid caregivers with the hardworking people who share my passion — and to help create the future I want, and that so many families deserve. Caregiving has been a rewarding experience for me. I love my family and I am grateful to serve them in this way, though they never asked me to. I am more hopeful about my career now than I ever have been. I even founded Our Turn 2 Care — an organization to connect marginalized millennial caregivers to information resources and each other.
Providing or receiving care is not a question of if, but when. In order for caregivers to get the support we so desperately need, we must tell our leaders that this matters to us, and to show up and vote! This year is a big year for the future of our families. But one in five caregivers historically don’t even vote because their care responsibilities keep them from the polls. In addition to this being a huge election year, Caring Across Generations is going to introduce a Universal Family Care resolution to Congress to get leaders on the record on whether they will back an expansive policy to support caregiving families. We cannot let those who would rather keep us silent to continue to wreak havoc on our country and our families — and our ability to care for one another. We are building a powerful movement, and our leaders need to hear our voice, see that there is a viable solution and know that they have no excuse to wait.