Remembering in the Face of Forgetting: A Fading Superhero (Part 1)

By Liz Sempio Sunga

My grandmother has always been one of my superheroes. I’ve always looked up to her for braiding my hair, for teaching me how to play mahjong, for holding my hand when I cross the street, and for being an incredible role model for what a loving and compassionate woman should be. Growing up, she has created wonderful memories with me and I always hoped to show her my gratitude as I grew older and more independent -- to be a woman she can also be proud of.

But with the onset of her Alzheimer’s, I began to believe that this dream would become impossible. In the US alone, more than five million people are affected by Alzheimer’s, it is the most common form of dementia. It typically affects individuals over the age of 65 so it is definitely a major concern one can have when aging (Alzheimer’s Association). It can be a harsh and overwhelming disease -- seemingly robbing loved ones of valuable memories and knowledge.

One of my biggest struggles with my grandmother’s Alzheimer’s is my progressive inability to feel connected with my grandmother. As her eyes begin to gloss over and speech dramatically slows, it’s hard not to think that I am losing her more and more as each day goes by. But with a family of determined caregivers and loving individuals, I realize that the battle of forgetting does not need to be lost, and my grandmother’s memory does not need to fade.

As an avid writer and a college student with a passion for learning new things, I have decided to use these passions as a means of empowerment and remembering amidst the adversity that Alzheimer’s brings. Learning has always been a way for me to take control of situations that can feel harrowing, overwhelming, and largely unknown. I believe that making an effort to find information and communities that enrich my understanding of Alzheimer's will make me a better caregiver, ally, and granddaughter. I also hope to inspire and be inspired by like-minded people who may have similar experiences as me.

As Citizen Science for Health hopes to empower our readers to take active steps to prevent long term medical conditions as well as live a more holistic lifestyle, I hope that this blog series will shed light not only on the need-to-know facts of Alzheimer’s, but also to tell the intimate story of what it’s like to witness Alzheimer’s from a third person perspective. I hope that this will create a community and safe space with CS4H that encourages discussion, removing stigma from the condition, and empowers every reader to take necessary action to make their brain health and their overall wellbeing a priority.

Although I cannot be with her as much as I want to, I still want to be a valuable ally and caretaker to Mama and her Alzheimer’s. I am starting this blog series to combine these interests and to document the progression of Mama’s condition for myself, my family, and people all around the world. I hope this will help people around the world gain access to knowledge and preventative strategies needed to empower themselves in the face of Alzheimer's. I hope that by documenting our journey, I can document the memories and milestones that Alzheimer's threatens to take away -- to remember in the face of forgetting.