I spent my 20s taking care of my mom, who had early-onset Alzheimer's. I wish I had learned to set boundaries earlier.
Courtesy of Carrie Shaw
- Carrie Shaw was a freshman in college when her mom was diagnosed with Alzheimer's.
- She and her sisters made a plan to help with caretaking at different stages of illness.
- Shaw says she wishes she set certain boundaries sooner, especially around bathroom duty.
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.
My sisters and I made a pact that we would each take time to care for Mom. As the youngest, I would have the later stage of the disease. I graduated college and served in the Peace Corps, but at 25, it was my turn to move back home to help care for my parents.
My mom didn't know who I was, but we formed unique connections
When I moved home, my mom's disease was advanced. I had to do some of the harder tasks, like taking away her car keys when the vehicle came home with too many dents and watching the doors when she tried to wander at night.
I had never felt particularly close to my mom, probably because of the ways her brain illness impacted our relationship before either of us knew about it. Oftentimes, after I moved home, she didn't know who I was.
Instead of relating as mother and daughter, we got to form new connections. Some days, I was her best friend growing up, having a slumber party; other days, I was her sister. I cherished being someone she trusted enough to allow these silly, joyful memories to come out. With therapy, I've realized those unique connection points that very much were a relationship with my mom.
I wish I'd set boundaries and had therapy earlier
There's no way around the grief and anger that comes with Alzheimer's. I was taking care of my mom and also worrying about my dad, who had physical health issues. I didn't consider the toll that took on me until I started having panic attacks, and I wish I had started therapy sooner.
My best advice for caregivers is to take care of their own health and set boundaries. Sometimes, aspects of caregiving can impact your own health. I hated having to help my mom in the bathroom, showering, and using the toilet. I wish I'd found a way earlier on to say no to those duties. It's OK when there are levels of caregiving that you just can't do or that overwhelm you.
My mom's legacy lives on through the work I do
As a caregiver, I fell in love with my mom. I also became dedicated to helping caregivers understand the people they're looking after. I started working with Otsuka, a pharmaceutical company, to highlight the tolls that caregiving can take. My sister and I founded Embodied Labs, which uses virtual reality to help caregivers see the world through the eyes of their patients or loved ones.
The love that I have for my mom has become a company and life calling. It's a way for my sister and I to do the work our mom inspired, embodying the values of her as a healthy person, not just someone with Alzheimer's.