Alzheimer's is a "whole family" disease

Many people think of Alzheimer's as a disease of the elderly. But Alzheimer's is a whole family disease, affecting almost 16 million Americans - family members and friends who provide more than 18 billion hours of unpaid care each year to those with Alzheimer's and other dementias. Many of those caregivers are young professionals, like Mary Margaret Reynolds. Following is her story.

"My mom is the strongest person I know. She was open minded, had an infectious laugh, loved to dance and had phenomenal taste in music. She was a dental hygienist for over 25 years and knew every patient’s name by heart.

When I was 19 my mom was diagnosed with early onset Alzheimer's. She was only 53 at the time. My dad is her main caregiver and the real hero, caring for her 24 hours a day, every day, ensuring she is as comfortable and happy as possible. In June they celebrated their 40th wedding anniversary. His love for her has never wavered and it's so hard to watch him lose the love of his life little by little every single day.

This disease is so much more than my mom not remembering who I am. It's hallucinations, mood swings, and the slow deterioration of all her motor skills. It's losing every piece of her. I got married in August, a time that is supposed to be so joyous and exciting, not having her "there" with me was extremely difficult.

There was a time when I would have told you that our only concern or worry about her and my wedding would be her having an episode or not being able to look at the camera for a handful of good pictures. However, before the wedding my mom suffered a seizure and everything changed. I worried about her being able to sit in her wheel chair and simply stay awake. Seizures and other complications are the things most people don't realize happen in the later stages of Alzheimer's.

I have been working with the Alzheimer's Association National Capital Area Chapter and their Walk to End Alzheimer's in DC to raise awareness with the younger generations. I wish, when my mom was diagnosed 10 years ago, I knew more about what Alzheimer's was and what my family was about to go through. I always tell people to make sure to tell their family that they love them and hug them any chance they can. Take as many pictures and videos of the fun moments because you never know when they will be gone. I would give anything to be able to hear my mom tell me she loves me one more time. Or just have a normal conversation with her. These are the things we take for granted.

"You don't just lose the person you love once, you lose them everyday over and over."

We're grateful to Mary Margaret for sharing her story and for her leadership as the committee chair for Walk to End Alzheimer's in the Nation's Capital. We invite you to join us on the National Mall this Saturday, October 8. Together, we can end Alzheimer's.