Your Truth: An Alzheimer’s Story
** Editor’s Note: Allison’s grandmother, Xanthula Tripolitis, passed away after her long battle with Alzheimer’s before this story was able to be published. Allison shares her story of the final days she shared with her grandmother, or yiayia in Greek, with the Grown Up Truth to shed light on a disease many young people don’t consider. On June 21st, the longest day of the year, the Alzheimer’s Association celebrates the Longest Day, where teams are asked to fundraise and do something they love to honor their loved one from sunrise to sunset, which commemorates the long battle of the disease. To learn more or to support the Longest Day, please visit the website.
Think of your brain as one of those 1000-piece puzzles. Every piece represents something you know how to do. Now think of what happens when you start taking a puzzle apart. At first, taking away the edge pieces doesn’t really affect the picture. It’s smaller, but the integrity of the picture remains. However, the more pieces you take away, the more distorted the puzzle gets, until what is left is a shadow of its former self.
That’s what Alzheimer’s disease does to brains. That’s what Alzheimer’s did to my yiayia.
You never realize all of the things you know how to do, until you see someone you love forget how to do them. Over the past 10 years, I have witnessed the puzzle pieces of my yiayia’s brain disappear, each loss more devastating than the last.
The first things to go with Alzheimer’s are probably the most familiar ones – directions, short-term memory. Little things that are more of an inconvenience than anything. We first realized that Yiayia might have Alzheimer’s when she got lost driving to the grocery store less than two miles from her house where she had been driving for 30 years. I was a high school senior at the time, and while I remember feeling sad, I didn’t understand what the diagnosis meant.
I didn’t understand then, as I do now, that she would never know me as an adult. She would never know that we share a love of travel, gold jewelry, and an affinity for backless dresses. She would never know I graduated from college and became a teacher. She would never know the man I marry.
I did understand that she would forget who I was. She soon forgot my mom, sister and me, but still knew that we were important and was always glad to see us. She took longer to forget her sister and the name of the dog. She remembered her husband the longest, but that piece of the puzzle was taken away from her eventually as well.
The things I didn’t expect her to forget were the hardest to live through and the most difficult to to discuss. No one wants to talk about how eventually the puzzle pieces that tell you how to brush your teeth, get dressed, shower, walk or even go to the bathroom will go away. But they do. And they did.
The role reversal that goes along with caring for a loved one with Alzheimer’s was unexpected. My yiayia was not only my favorite babysitter but also the most convenient as she lived directly across the street from me. Now I was the one helping to care for her, doing many of the same tasks—feeding her, helping her get dressed, helping her go to the bathroom—that she had helped me with when I was a child.
I am grateful to have been able to see my yiayia so frequently, though living so near also meant her disease permeated every facet of my life. At a time when twenty-somethings are typically focused on how their lives were beginning, I’ve spent much of my time focused on how tragic the end of a person’s life can be. There is a not a day that goes by that I don’t worry that about my yiayia’s health or worry that this disease will rear its ugly head again in another member of my family. I worry for my mom. I worry for myself.
I wish that my most recent memories of my yiayia weren’t of her sitting in the bathroom for hours. I wish that they weren’t of her grimacing in pain as she is moved from bed into her wheelchair. I wish they weren’t of her throwing up the popsicle she had eaten that day. The only thing she had eaten that day.
Now my yiayia has forgotten the last puzzle piece, the piece that was keeping her alive – her ability to eat. Soon I won’t get to make any new memories with her. And even though she has no memories of me in the last 10 years, I am so thankful to have had those 10 years with her. I hope that when the time comes, the more recent and painful memories will fade to the background, and older memories will take their place. Memories like watching Days of our Lives with her every afternoon as she babysat me or working together in her award-winning garden. Alzheimer’s is going to take her away from me, leaving behind, ironically, only memories. My memories of her will live on even when she is gone. I will cherish them forever.