In collaboration with Care in Action.
Here’s something I wish someone would’ve prepared me for. When you agree to be a caregiver, it will affect every aspect of your life — your love life, work-life and social life.
Care work even seeps its way into my alone time. In my downtime, I find myself lying in bed wondering if mom drank enough water today or if I can find a caregiver for my date tomorrow night. Every decision I make is with my mother’s care in mind. Even deciding whether I want to start the family she desperately wanted for me is rooted in how it would affect my ability to care for my mother. There is rarely ever space left for me.
I knew this would be a difficult journey, but I never imagined the pain that also comes with watching a parent slowly decline. It weakens your spirit over time.
I want to be clear: I’m proud to carry out this work and return the care my mother so selflessly gave. But I am constantly reminded of the lack of structural support women — who are disproportionately responsible for family caregiving at all life stages — are given to provide the thing that we will all need at some point in our lives.
I receive daily messages from Black women who are unexpectedly embarking on this journey alone. Their messages are often filled with sorrow and uncertainty about how to proceed after hearing about a parent's diagnosis. I wish I could comfort them. I wish we could build a society where leaning on each other for support was welcome and prioritizing care — from an economic standpoint to the social responsibility of a community — wasn’t considered taboo.
Unfortunately, we live in a world that has not recognized the mental, emotional, financial and spiritual deterioration caregivers undergo while caring for a loved one. With this in mind, I created Mom Of My Mom to lend my experience and insight in hopes of giving another woman the comfort of knowing she is not alone.
Mom Of My Mom is a digital diary of my life as a caregiver with my mother who was diagnosed with Alzheimer’s. I often share tips and tricks that help me get through difficult situations that arise. Documenting our journey has brought these issues to a wide audience and illuminated what my day-to-day life looks like as a millennial caregiver to my mother, which I discussed on a recent Instagram Live with Care in Action — an organization fighting for labor protections for domestic workers and federal investments in the care economy that will both help care workers gain access to higher-paying jobs and allow family caregivers, like myself, to return to work by securing affordable care services for our loved ones. For me, that’s critical.
I’ve lost years of employment opportunities, income and social currency because my life has become consumed with caregiving. As you slowly remove yourself from society to care for an ailing parent, your confidence in your ability to make money and socialize diminish as well. You begin to second guess yourself and your importance to society. Your need to even exist comes into question.
One of the most unexpected challenges in my caregiving journey was how little empathy and external support I received. Friends begin to fall by the wayside. I found it difficult to relate to issues that other women my age experience. And worse, I began to disengage when they complained about everyday problems. Being an only child in my situation seems to be a blessing because I hear about siblings rivaling over a parent’s care — one is left to take on the bulk of the responsibility. It’s taught me to cherish those who show up, and most of the time they aren’t blood-related.
Embarking on this unexpected journey forced me to put myself on the back-burner, and my mental health ultimately became a casualty. Recently, we’ve heard the term “self-care” become more and more popular, but for caregivers, self-care has become what feels like an abstract idea — and the pandemic has only exacerbated this issue. Prior to the onset of COVID-19, nearly one-third of caregivers experienced poor mental health while providing care to others. During the peak of the pandemic, many caregivers experienced increased levels of adverse mental health effects. In a survey led by the CDC, two-thirds of participants who identified as unpaid caregivers expressed experiencing mental health challenges during the pandemic. My experience parallels that of the millions of caregivers in this country walking the fine line of taking care of a loved one and taking care of self.
After experiencing mental health symptoms such as suicidal ideation and more, I was fortunate enough to have friends extend necessary support and pay for therapy sessions to help me cope and create space for myself, but I’ve realized this is a luxury not afforded to everyone. I’ve learned that investing in self-care is vital. However, without resources and policies that center on alleviating the heavy lift of caring for a loved one (especially for women of color) self-care is a temporary solution to an issue that inevitably causes burnout. The need for caregiving isn’t going anywhere and lasting issues need lasting solutions.
Over 50 million Americans are undertaking the role of caregiver for an adult family member or friend and as our population ages, that number is steadily growing. Today, there are over 46 million Americans over the age of 65 and that number is expected to inflate to over 90 million by 2050. The fact is our communities are aging at a rate that makes adequate care support and resources more critical than ever. Coupled with a global pandemic, the pressures of caring for our older population are falling on the shoulders of women and women of color, and neglected structural supports and policies are taking a catastrophic toll on women’s ability to integrate back into the workforce and generate economic stability.
We are 21 months into the COVID-19 pandemic and adequate investment in care is still undecided. Thanks to the tireless work of organizations like Care in Action and others across the country, Democratic legislators have made a concerted effort to push through investment in human infrastructure, but there’s still work left to be done. We need the Senate to pass the Build Back Better agenda, which includes a $150 billion investment in home and community-based care services. We need President Biden to immediately sign that bill into law when it hits his desk. Care can’t wait — and neither can I.
As a caregiver, I can tell you that we cannot head into another year without seeing care investment to the finish line. Our lives quite literally depend on it.
Jacquelyn Revere is the creator of Mom Of My Mom.