In October 2019, I had the opportunity to join UsAgainstAlzheimer’s for its National Alzheimer’s Summit in Washington, D.C., and joined with more than 50 others from across the Alzheimer’s youth movement to spend a  day with legislators and advocates. We talked about our support for two key Alzheimer’s priorities that are particularly important to individuals for whom the disease runs in their family: early detection and diagnosis, through the passage of the CHANGE Act; and increased federal funding for Alzheimer’s research so we can accelerate a cure. As the granddaughter of someone whose life was taken by Alzheimer’s, I encourage advocates of all ages to make their voices heard in our fight to stop this disease. As part of National Alzheimer’s Month, I’m proud to share my story.

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My grandpa was a gentle giant. He was always smiling and enjoying everything life had to offer. I remember the good times: squealing while running away in a heated game of tag, him hugging me while we hid from my sister in an intense game of hide-and-go-seek, and his 6’4” frame squeezing into a tiny chair for my tea party – pinky up! – surrounded by stuffed animals. He was always someone I could play with, never saying no, and always willing to do whatever it took to make my sisters and me happy.

After a time, when I was 11 years old, I noticed that his smile had started to fade and that he wasn’t quite himself. Nothing hurt me or my family more.

It started as so many of these stories do – with him forgetting little things here and there, like appointments and people’s names. But then it got significantly worse. He lost one of the most important feelings in the world: love. I was watching my grandpa’s memories of being loved and giving love slowly fade away. The people he loved the most – my mom, my sisters, me – were, for him, falling into a dark oblivion. And the day finally came when he no longer remembered any of us. 

I was confused and hurt that he was changing. I know 11-year-olds aren’t supposed to understand – but I could not comprehend why he was choosing to end the treasured relationship we shared. It wasn’t until I was 17 years old, witnessing the last year of his life, when I realized and ultimately understood just how little control he actually had.

It was evident that living with this disease was torturous for him. It ultimately robbed him of his speech and made it impossible for him to be part of our chatty family. As an accomplished engineer and veteran, his intelligence and experience were undeniable; yet, this illness deprived him of his opportunity to share it. I could always see that he wanted to speak. He wanted to ask us how we were doing, he wanted to help me with my architecture homework; he wanted to be with us. His agitation only grew as he could not remember words, stories, and shared memories of his grandchildren’s lives. 

But there were fond memories, too. Some of the best centered around music’s ability to break down the walls that Alzheizmer’s had created around his memory. My younger sister plays the piano – and no matter what state of mind my grandpa was in, he would always come back to us through music. When my sister would play familiar songs from his childhood, he would sing along and tap to the beat. While it was in those moments that he was the most “present,” it just made us miss him so much more. 

But what I will miss the most are the conversations my grandpa and I never got to have. By the time the disease took control, I was coming of the age where I wanted to hear his stories. The sad reality is that I never truly got to meet my grandpa. I heard of his great achievements, his smarts, and his intuitiveness from my family – but I never really had the opportunity to “meet” him as a grown person.

While it’s easy to harbor regrets and sadness, it’s also important to remember the fun times. While my grandfather’s Alzheimer’s may have taken away his memory, right now, it has no grasp on my memories of him.