Aisha Adkins, 34, a graduate student in Atlanta, has been a full-time caregiver for her mother, Rose, now 64, since she was diagnosed with frontotemporal dementia (FTD) in 2013. While Aisha was in college, she was introduced to caregiving when her father had a major stroke; he has since recovered.
My mother’s confusion and memory lapses made it so it wasn’t safe for her to be alone at home. We were afraid that she might forget that the stove was left on or that she’d panic because she’d forget that my father and I were at work. We worried about how she would handle a stranger coming to the door or an emergency, like if she fell. We wanted to take as much preventive action as possible and my father really needed to be able to work full-time so I volunteered to resign from my job to stay at home with my mother.
Every day is a little different. I’m primarily responsible for her activities of daily living — if she needs assistance with bathing, meals or medication management — and I try to keep her as comfortable as possible. I also provide activities that are stimulating to her: One thing she really enjoys is adult coloring books so that’s something we do together. Some days she’s more lucid than others. I try to help her be aware of the time of day and the day of the week, and I try to reorient her or reassure her when moments of severe confusion set in.
She can walk but her balance is a significant challenge so she needs a walker. For longer distances, we use a wheelchair. Going out can be overwhelming and confusing to her but we do go to the park sometimes. There’s a dog park nearby where there are some small therapy dogs; sometimes they’ll come and sit on her lap — she really enjoys that.
For the first few years, it was difficult not to compare my life to my peers’ — my friends were getting married and having families. There were all these things I wanted to do — go to graduate school, work on children’s causes — and for a while, I felt like I was really missing out. But then I realized that my life is going to look different. I had to get creative and readjust my priorities and my expectations. I realized that schools aren’t going anywhere and jobs will still be available but my family is irreplaceable. I didn’t want to regret that I should have spent more time with my family.
I had no idea that my family’s greatest challenge would become my greatest career inspiration. I’ve always enjoyed writing so I started doing some freelance writing about caregiving, my faith, and self-care. I started a nonprofit — Our Turn 2 Care — aimed at connecting millennial caregivers to information, resources and each other. And I’m getting a nonprofit management certificate with the goal of entering a Master of Public Administration program. I have limited time and funds to be social, which has actually made things more special because I’m choosing to spend time with friends who are really supportive.
Being my mother’s caregiver has been very rewarding. I’m an only child so my parents and I have always been very close. Being present, aware and helpful and doing my part to bring her a little comfort and joy feels really good. I’ve also learned a lot about my strength, and that has helped me grow and become more confident and assertive. My mother had three different diagnoses before getting to FTD. Being able to challenge a diagnosis I didn’t think was correct or a treatment plan I didn’t agree with, being able to use my voice and suggest we try something different — those were some of the best decisions I could have made for my family. As a woman and as a woman of color, it can be difficult to speak up. But knowing I have the right to say ‘No’ and the right to ask questions has given me a strength that I didn’t know I needed.”
—as told to Stacey Colino