One Family, One Chance: Reframing My Life as a Millennial Caregiver

As I write this essay, sweat drips from my brow, literally.

I am sitting on the ravine-facing balcony of my family’s rented condo in Atlanta, Georgia. Eryn Allen Kane’s gripping vocal melodies flow through my earbuds. The temperature is 96 degrees, with a heat index of 106. My laptop feels like it is melting into my thighs, and I drink water like a woman marooned on an island.

Desperate.

In some ways, I am a desperate woman on a metaphorical island of my own.

I am a 34-year-old caregiver for my mother, who was diagnosed with frontotemporal dementia in 2013. In the spring of that year, my life took a sharp left turn.

I went from being a broke millennial excited about landing her first “big-girl” job after college, dreaming about the future and what might be, to figuring out how Medicare works and using mindful touch techniques to help my mother bathe and dress for the day.

Unlike many of my peers, I am not in a relationship or planning a family. I am not in line for a promotion at a fancy startup. My savings account has a balance of zero dollars, and my checking account has little more.

There are no Thursday happy hours after work and very few weekends out with friends.

I have always loved a challenge and building relationships. Over the last six years, I have found that hustling in the gig economy as a freelancer and spending meaningful time with my family have taken priority over impressive titles and Instagram-worthy vacations.

Reaching that understanding required a reset. Jobs and parties may come and go, but I have only one opportunity to be there for the family I have been given.

That realization has helped me cope with the moments when I feel that life is passing me by. The desperation, however, remains.

As the caregiver for someone living with dementia, I exist in a continuous state of mourning as I watch pieces of my mother slip from the present into the past.

The strain of witnessing such a profound loss over an extended period of time is intensified by how few people my age can relate to my experience. Financial instability, inconsistent professional assistance, and the lack of accessible, culturally competent support systems make that isolation even greater.

When I accompany my mother to neurology appointments or search for support groups, I often notice a lack of diversity in age, race, sexuality, and class.

Healthcare systems and support services frequently fail to recognize the need for inclusive programming at every stage of care. That failure further isolates caregivers who belong to marginalized communities.

In 2017, I launched Our Turn 2 Care, an online platform designed to connect marginalized millennial caregivers with information, resources, and one another.

The project grew from personal desperation and a desire to create measurable change for the LGBTQ people, people of color, and millions of millennials currently caring for parents and loved ones across the United States.

Caregiving can be profoundly lonely. At times, it can feel almost esoteric despite how common it is becoming.

Conversations about healthcare often focus on the financial cost to the patient. Policy proposals such as Caring Across Generations’ Universal Family Care, along with emerging care-support technologies, are beginning to bring greater attention to caregivers’ financial, physical, social, and psychological needs.

Stories about caregivers are also receiving more attention.

Still, here I sit in the sweltering heat, sharing my story once again.

I endure the heat in a desperate attempt to get some fresh air and create a sense of normalcy away from the constant reminders of my circumstances.

Music streams into one ear. The other remains trained toward the balcony door, listening for my parents’ voices in case they need help with toileting, changing the television channel, or simply remembering the month and year.

I am still desperate for connection with my peers. I still need meaningful, dependable support.

I am also keenly aware of the importance of the work I have chosen to do for my family.

It is work for which I have never been trained and remain woefully underqualified. Yet I cannot imagine doing anything else.

My family needs someone who can anticipate their needs and offer judgment-free, uncompensated comfort and support as they live the remainder of their lives with agency and dignity.

I hope I have done my part to help them end well.