My mother was diagnosed with Early Onset Alzheimer’s at the age of 54. I was 28. That day at the doctor’s office, hearing those words, taking in that diagnosis, acknowledging that life as we know it, would never be the same, crushed me. I was her world, and she was mine, and in a matter of minutes, I realized my world was taken from me. My mother and I did everything together. We traveled, worked out, took belly dancing classes, golf lessons, double dates, brunched, everything you do with your best friend. That is all a memory of the past.
The disease just takes and takes, indiscriminately and without mercy. Now, 5 years later, her memory is gone, and her cognitive abilities have been taken away. She is trapped inside this unfamiliar body, where her communication skills are a thing of the past. The words don’t come out anymore, her judgment is altered, and she is unable to focus, even though I know she wants to. I know this is a permanent, irreversible disease, and it will only get worse. There is no cure, there is no solution, there is no magic pill to make it all go away.
After my mother’s diagnosis, I didn’t know where to go, who to turn to, what to do, or how to react. Then I found Alzheimer’s LA, where I joined a support group to help me navigate through this awful disease, the fear I felt, and the uncertainty. They helped me cope with the pain, the tears, and the sadness. Because of Alzheimer’s LA, I learned how to be the best and most supportive daughter for my mom. I met Zina, a Care Counselor, who was my guiding angel. Not only was she a great support group leader, she took the time to meet with me after hours to answer all my questions and provided the guidance and advice I needed. She was also the catalyst behind my decision to become an advocate in the fight against Alzheimer’s.
I realized, this was my new life, as much as I wished and hoped and dreamt it would change… it wasn’t going to change, there was no going back, only forward. My old life, filled with cotton candy and lollipops was just that, my old life. My new life had many more bumps, hurdles, dead ends and dark corners, and I just had to accept that. I had to turn this pain into purpose. It was time to talk about Alzheimer’s, not hide behind it. It was time to tell my story, to be that voice for my mom. It was time to bring awareness to this devastating disease, to make a change, to find a cure. In September 2018, I went to Washington DC with Alzheimer’s LA, to share our story with members of Congress. I am so honored to say we left that trip with Congress’ approval to a record-setting increase of $425 million per year of funding for Alzheimer’s research.
Alzheimer’s will put you to the test. It is ever challenging, ever novel, ever painful, but we must stay positive. We must be the change we want to see in the world. I now spend my free time doing all I can to be an advocate in the fight against Alzheimer’s. My goal is to bring awareness to this disease, share my story so others know they are not alone, be that voice for my mom, and continue the fight until we find a cure.
I choose to stay positive. I choose to make my days with my mom the best they can possibly be. I choose to be her light. Life isn’t about waiting for the storm to pass; it’s about learning to dance in the rain.