Excerpt of the article I spent my 20s taking care of my mom, who had early-onset Alzheimer's. I wish I had learned to set boundaries earlier by Kelly Burch, originally published on Business Insider, January 10, 2024.
This as-told-to essay is based on a conversation with Carrie Shaw. It has been edited for length and clarity.
Looking back, the signs of my mother's early-onset Alzheimer's disease started when I was in middle school. I would come home and she'd be sitting in the dark. She'd be confused and make jokes at her own expense while my two sisters and I laughed alongside her — but also at her.
One day during my junior year of high school, my mom picked up a US News and World Report magazine. She said, I've read this article three times, and I still can't understand it. My mom was a speech-language pathologist. She was smart and knew she could normally understand something written for a widespread audience. That's the day she realized something was wrong with her brain.
She started really talking with doctors, searching for an explanation. She got it when I was a freshman in college: early-onset Alzheimer's. She and my dad told me and my sisters when we gathered for a family wedding. My mom was only in her 40s. Eventually, the disease killed her when she was only 61 years old and I was 28. But before that, I spent much of my 20s as her caretaker.
When I was at college, my mom would forget to call
The first few years after my mom's diagnosis were odd. Logically, I knew she had a disease. But she could still drive and do most of her normal daily activities. Yet, she wasn't really able to mother. I was at college about 90 minutes from home. My peers had parents checking in on them nonstop, but my mom would forget to call.
Friends knew about my mom's diagnosis, but it was hard for them to understand. I found myself relating more to my mother's friends, who were starting to deal with their parents' failing health and impending mortality.
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