My Turn to Care: Giving Back to My Mother Who Gave Me So Much

“Although my life doesn’t look the way I thought it would, I can still make a difference — the first and most important difference of these being the one I make right here at home.”

By Aisha Adkins, End Well eCaregiver

eCaregiver Aisha Adkins with her mother and father. Aisha is a full-time caregiver for her mother who has dementia. (Photo courtesy of Love Not Lost.)

From the time we are children, we spend hours crafting our futures. Where will we attend college? What career will we choose? Who will we marry? Our daydreams often consist of entrepreneurial ventures, exotic travels, and leisurely retirements in tropical locations. The possibilities are seemingly endless.

My daydreams always led me to opportunities to help people. I earned my bachelor’s degree in social services and planned to work with disadvantaged youth. I graduated from college and returned home ready to shape tomorrow’s leaders. But in the midst of applying for graduate school and working part-time jobs (it was the height of the Great Recession), my life abruptly changed course.

In 2012, my mother began exhibiting symptoms of early onset dementia, and, a year later, she was diagnosed with frontotemporal dementia, a rare form of the disease that primarily affects those between the ages of 45 and 65. This degenerative brain disease is most notably characterized by dramatic changes in personality and cognition and often devastates victims and their families in its wake.

When my mother was first diagnosed, I knew she would need my support. The one-time business owner and homemaker extraordinaire was suddenly struggling to manage simple tasks. Making a turkey sandwich, washing a load of whites, or calling an old girlfriend were daily activities that now gave her great difficulty; leaving her alone at home became dangerous.

Recognizing that changes had to be made, my father and I discussed our options. Without question, I offered to “stay home with Mommy.” I left my full-time job in healthcare to become my mom’s full-time caregiver. I thought I’d stay with her until she needed to live in a specialized memory care facility. I also thought I would cherish those challenging few months, making the most of the time we had left, and, once my mother passed away, honor her memory by continuing my education and serving youth in need.

It has been a little over five years since my mother’s diagnosis. My mother is still here, though pieces of her noticeably slip away each day. My father still works full-time, and I remain my mother’s full-time caregiver. It is a relief that my mother is doing better than doctors initially predicted. I am grateful that we are blessed with a little more time with her — even when she forgets about our epic road trip to Las Vegas in the summer of 1998 or can’t quite remember all of the details of my father’s sweet proposal to his high school sweetheart.

While I’ve been busy with medication management, appointment scheduling, and preparing myself for my mother’s final moments in this long goodbye, my peers have continued with their life plans. Med students have become doctors, couples have bought homes and had babies, and friends’ parents have moved to Florida to live out their golden years. I feel like the world has been moving at hyper-speed while I stand still, anxious about what the future holds.

Many millennials in my situation might feel sorry for themselves, wondering when it will be their turn to “live.” I did. For a time. But then I remembered that my mother’s timeline has been cut short, and I should not take moments with her for granted.

And, although my life doesn’t look the way I thought it would, I can still make a difference — the first and most important difference of these being the one I make right here at home.

My mother always led a full life, and I refuse to allow her twilight years to be characterized solely by the suffering that comes with dementia. She showed incredible strength and resilience when she cared for a fragile, preemie baby (yours truly) and made her dreams come true when she started her own successful baking company. She always prided herself on quality work and fought for her family and those in need. I had the best role model a future caregiver could ever have. If I can care for my mother half as well as she cared for me, I would know I was providing the best care for her that I possibly could.

Over the years, I’ve spent time looking for resources to help support my caregiving journey only to be disappointed by how little information is available to and geared toward young caregivers. Much of what I found was targeted toward older adults and healthcare professionals, and it often failed to provide culturally-sensitive solutions for patients and caregivers. Social media forums, like Facebook groups for young caregivers, have offered some support but aren’t always racially diverse or solutions-focused.

Photo of Aisha courtesy of Ashley Chupp Photography.

Inspired by the desire to arm myself with the information and tools needed to give my mother a positive end-of-life experience, as well as find other people who relate my struggle and create safe spaces for the millions of future young adult caregivers, I created Our Turn 2 Care. Our Turn 2 Care is a platform for marginalized millennial family caregivers that connects them to accurate information, culturally relevant resources, and each other.

No one likes to think about what happens when life doesn’t go according to plan or, inevitably, reaches an end. But we must start thinking about death as it pertains to life. We must figure out the best way to live out our days in comfort and dignity: Well loved and fully supported. While I wish my family wasn’t having to watch my mother succumb to the symptoms of this deadly brain disease, I understand now that everyone’s story plays out a little differently. To be present every day, give love, and fight for those who cannot fight for themselves — these are my callings, and I will pursue them well for as long as I am allowed. It is my turn to care.

Aisha Adkins is a writer, caregiver, advocate, graduate student, and speaker based in Atlanta, Georgia. This storyteller is driven by faith, inspired by family, and eager to use her talents to affect positive social change. She is a full-time caregiver for her mother and founder of Our Turn 2 Care.

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