Truth Or Care

In my mid-twenties, I was strategizing an epic rise in my new career within the healthcare field. I had big dreams of climbing the medical ladder, helping patients left and right, while righting wrongs along the way. Then one day, all of my planning and dreaming came to a screeching halt. After a year-and-a-half or so of exhibiting bizarre and even dangerous behavior, my mother was diagnosed with an incurable disease.

My once sweet, caring mother began lashing out with physical and verbal attacks. Her countenance changed from one of sweetness, led by her Christian faith, to one of bitterness and anger – the source at the time unknown.

There was a series of unfortunate events, but after my mother threatened my father with a knife for bringing home the wrong type of cheese one night for the Mexican meal she was preparing for dinner, my father and I knew something was horribly wrong.

After a series of misdiagnoses – everything from menopause-related depression to early-onset Alzheimer's disease – and a number of medical professionals with varied levels of experience and exposure, we finally found the answers we were looking for. In February of 2013, my mother was diagnosed with frontotemporal dementia, a form of the disease impacting people primarily under the age of 60. It is fatal. There is no cure, and the life expectancy is seven to eight years.

As a family, it made the most sense for me to stay home and care for my mother. My father needed to continue working to maintain healthcare benefits, and I was new enough in my career that we figured I’d have plenty of time to find a new job in the near future. At the time we made that decision, I figured I would take on this responsibility for a few months before eventually placing my mother in a memory care facility. This was the reality we were told to expect by healthcare providers and social workers across the board.

The truth? Memory care costs tens of thousands of dollars per month and is not an automatic decision for most families. There are emotions attached to placing a loved one in a long-term care facility that make it difficult, but even if or when that time becomes necessary, it is truly financially inaccessible for many people in America.

More truth? I wanted to take care of my mom. I wanted to be the one to calm her in the middle of the night when she was afraid and even unaware of who I was. I enjoyed helping her bathe and get dressed. I liked coloring with her and playing cognitive word games.

Now, don’t get me wrong. It wasn’t all easy. Not all truths were rosy. The truth is, I hated when she forgot who I was. I became angry when she was fearful of my father – her high school sweetheart of nearly fifty years. I was hurt when she called me names or simply just stared off into the abyss, apathetic to the world around her.

The most revealing truth of them all is that I would do it all again—the hard things, the simple things, and the good things. You see, although I may have missed out on this big healthcare career dream, I gained so much more throughout the experience of caring for my mother. I learned about selfless compassion, radical acceptance, and servant leadership. I learned how to pivot my challenging personal experiences into a career as a storyteller and an advocate. I made new friends and found a whole new community. 

My life is not the one I envisioned for myself, but it remains purpose-driven, and I am honored to have served my mother. Now I have moved on to my new calling, caring for my father, who is living with vascular dementia. Now I have these truths to bring with me along on this journey. For these new truths, I am tremendously grateful.

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‍Aisha Adkins, MPA, CNP is an Atlanta-based family caregiver, founder, writer, thought leader, speaker, and organizer who is passionate about building an equitable, inclusive, and comprehensive public health and care infrastructure using media, storytelling, and culture and policy change. Her versatility has enabled her to publish works both in academic journals and popular publications. She is committed to making an impact across the country for unpaid caregivers of color through her new venture, Caregivers of Color Collective. Learn more at aishaadkins.com.