THE BLOG

Losing My Mother Again and Again: My Story With Alzheimer's Disease

06/30/2015 10:06 am ET | Updated Jun 30, 2016

My mom was diagnosed with younger-onset Alzheimer's disease when she was 57.

It started small. When we spoke on the phone, I noticed she became disconnected and couldn't follow the conversation the way she once could -- at the time, I couldn't put my finger on it. It wasn't until she got lost in her hometown, the place where she was a real estate broker for 25 years, that my family realized there was something seriously wrong. We chose to visit a specialist at Rush Memorial Alzheimer's Disease Center in Chicago, where we learned the devastating news that my mom was in her second stage of Alzheimer's. It struck with excruciating force.

The coming years were difficult. If you've read the book or seen the movie Still Alice, you have a glimpse into what our family, particularly my mother, went through. Some things I expected, but some things took me by surprise, like how she lost the ability to get dressed in the morning but could still tie her shoes. A big part of the way Alzheimer's disease affected my mom was in her speech and how she lost her words. So many times I felt she could recognize me -- I could see it in her eyes -- but the words to connect danced unreachably in the air.

Living with or loving someone with Alzheimer's can feel challenging. It's hard to know what to do and how to interact within a relationship that is no longer familiar. If there's any advice I can impart, it's to practice patience and affection for a loved one, or anyone, with Alzheimer's. My father was her primary caregiver and a role model for the way I approached my mother during her time living with the disease. We made a point of staying patient and calm, we spoke slower so she might better follow the conversation. We tried to not talk over each other, or argue with her because, honestly, what would have been the point? We cultivated a world of affection for my mother. Her mouth and hands were the last to deteriorate, so we held her hands, kissed her on the lips, and made sure to do so often. It didn't just help her feel grounded, it helped us feel connected to her in her final years.

I lost my mom six years after her diagnosis, when she was 63 years old, from a stroke due to complications with Alzheimer's. Really, I didn't just lose her when she passed, I lost my mom many times over the course of her fight against Alzheimer's. It was devastating for my brother and me, but I can't imagine the way my father must have felt, watching his wife of 43 years become increasingly affected by the disease. When people ask me how he did it, the best response I can give is that he loved her, more than anything, and he felt it was his responsibility to take care of her to the best of his ability.

When she was diagnosed, I was so angry to find out there is no way to prevent, cure or even slow Alzheimer's. Since two genetic biomarkers were discovered in my mom, I have a greater risk of developing Alzheimer's than most people, if I have the same gene mutation. I fear I'll also develop younger-onset Alzheimer's and that my daughter will know the same sadness I felt with my mom's diagnosis.

Currently, there is no preventative treatment for Alzheimer's. However, there is evidence people can reduce their risk of cognitive decline, which is a deterioration in memory or cognition. Research has suggested combining good nutrition with mental, social and physical activities may have a greater benefit in maintaining or improving brain health than any single activity. (For more information, see "10 Ways to Love Your Brain," tips from the Alzheimer's Association that may reduce your risk of cognitive decline.)

When my mother developed Alzheimer's, I was angry. But I know just being angry or afraid will not do me any good. To reduce my risk of cognitive decline, I live a healthy lifestyle to take care of my brain and body where I can. I try to follow the healthiest diet possible. I work out five days a week and run half marathons -- 25 percent of the blood from each heartbeat goes directly to the brain, and maintaining heart health is one of the best ways to maintain brain health. I exercise my brain and keep my mind challenged in my everyday life. I also joined clinical trials to help inform research. I found comfort volunteering for the Alzheimer's Association Greater Iowa Chapter. I became a Walk to End Alzheimer's team leader, a subcommittee chair for team retention and helped with marketing and advocacy initiatives, and someday I hope I can say I helped find a treatment.

I can't be sure I won't develop Alzheimer's. My mother was an active, healthy, socially-engaged person, and that wasn't enough to protect her. But I'm doing everything I can to keep my brain healthy and support the search for a treatment or cure.