When my mother was diagnosed with Alzheimer’s 13 years ago, her whole body froze up in the doctor’s office. We couldn’t even say the word “Alzheimer’s” around her until two years before she passed. In her mind, in the South where she was raised, that word meant you belonged in an asylum. So, we kept it quiet, protecting her dignity the way she’d lived her whole life.
That silence came at a cost.
For eight of those years, I shared caregiving responsibilities with my sister and supported my father by attending his doctor appointments on-site, all while working full-time. I drove from McCordsville to the near north side to check in during the week, and Saturdays and Sundays were mine entirely.
When she was no longer able to leave the house, I’d color her hair every two weeks because my mother would never be seen with a single strand of gray, even in her eighties. I set up a whole beauty shop in their bathroom and had about 25 minutes before she’d get combative. But when I’d hold up the mirror afterward, she’d smile. That smile was worth everything.
The disease stole her elegance bit by bit. My mother was a lady: she never cursed, was an opera singer in college, and served as the human relations coordinator for Wayne Township, as well as interim assistant superintendent for the township. Alzheimer’s robbed her of that.
When streetlights came on at dusk, she’d see monsters. Leaves blowing became people with names like “Bob” and “Fred,” who were “trying to break in.” I had to learn how to meet her in whatever world she was living in to make her feel safe.
Over time, I became someone I didn’t recognize. I was no longer just the daughter — I was the gatekeeper, the business manager who handled insurance, medications, legal documents and even family disputes.
I stopped sharing how hard it was because people either thought I was exaggerating or blamed me for not doing enough. So, I kept my head down, my mouth shut and would ask God what He wanted from me.
Here’s what we often overlook – caregiving can have financial costs that people may not see such as the gas, the meals and the time lost at work. I just bought a new car because of all the miles. There’s no stipend for this. And because my parents were above the Medicaid threshold, we couldn’t access help even though expenses were crushing.
I was fortunate to have a career and an understanding employer, but I never took time off except for three weeks when my mother passed. I was terrified of falling behind.
My back hurt for years from lifting her out of bed and going up and down stairs five or six times a day. I missed events and turned down opportunities. Caregiving took pieces of me I’ll never get back.
Still, I wouldn’t trade the time I had. My mom never forgot me. She called me “Cubby” for the last four years, but she never forgot me.
By stepping in as a family caregiver, I gained a wealth of valuable time and memories that I will forever cherish. I was able to sing hymns with her until two months before she passed. I have videos of her doing a little shoulder dance to the song “Flowers” by Miley Cyrus that I can watch when I need to feel close to her.
To this day, I still talk to her every morning on my drive to work. “Good morning, Mom. What are you having for breakfast?” It’s one-sided, but it keeps her with me.
If you’re a caregiver, know this: you’re not alone. Seek legal help early. Talk to your employer. Find your people, whether that’s through the Alzheimer’s Association, your church or a support group.
Set boundaries with family members who aren’t part of the solution. And give yourself permission to grieve what you’re losing while you’re still in it.
You don’t have to do this perfectly. You just have to do it with love.
Kim Raby is the sales and planning manager a the Madam Walker Legacy Center.
