“Living Through Forgetting: How My Godfather’s Dementia Shaped Me” by Hannah Williams, 18

At ten years old I played and laughed with my godfather, a reverend and community activist who never lost the desire to make the world a better place. I loved him, his energy, his stories, and his jokes. But two years later, it all started going awry. He began asking me over and over again: "What's your name, pretty young lady? “You’re getting so big, how old are you now? What grade are you in now?”

At first, I thought it was just a joke, something playful we were doing. But it quickly stopped being funny. It became heartbreaking. With every time I had to reintroduce myself, it was like a piece of me was erasing from his world little by little. I didn't know it then, but what I was witnessing was the beginning of his battle with dementia and Alzheimer's, a devastating illness that would change his life, and mine forever.

The changes started slowly, although it feels so fast looking back now. It started with small forgetfulness like where he had put something. But soon, the memory loss became impossible to ignore. What confused me the most was how he would look at me with love rather than recognition. As a kid, I couldn’t wrap my head around it. Why would someone who was so important to me not be able to recognize me?

I didn’t know that dementia wasn’t just forgetfulness, but a slow unraveling of everything familiar. I felt invisible, and frustrated, and lost, all at once. But I could not begin to imagine how he was feeling. And I didn’t know how to help him. I couldn’t tell what to say, or understand that what was happening wasn’t something he could control.

When I was 14, things worsened. His physical abilities began to deteriorate. The man who once ran track now needed a cane to move around the house. He needed someone with him constantly. I had no idea that dementia was not forgetting, but the slow dismantling of everything he was familiar with. I could see the toll it was taking on my godmother’s face and knew she couldn’t do it alone. So I took it on, not because I had to, but because I care about them. And because I wanted to do something that counted.

That same year, I wrote a I-Search paper regarding Alzheimer’s and dementia. I researched how it not only affects the person diagnosed with dementia, but the people around them who love and care for them. Through my research, I discovered that caregivers feel such stress, depression, and burnout. I realized that the emotional weight I was carrying wasn't mine alone, but one that many other people were carrying as well.

After school, I’d go to my godfather’s house to help. Sometimes that meant sitting with him so my godmother could take a break. Other times, I helped him eat, walk, or just stay calm. I joined my godmother’s caregiver support group so I could learn more about how to support both of them. I wanted to understand what they were going through.

Through that experience, I learned to be patient. I learned to be gentle. I learned that sometimes just being there, quietly and consistently is enough. One thing that stuck with me from the support group was when someone said: “As hard as caregiving is, always remember that what they’re going through is worse.” That perspective changed everything for me. Imagine waking up and not knowing where you are, who you're with, or how to do things you used to do. That fear and confusion is something people with dementia (like my godfather) live with every day.

Helping care for my godfather taught me how to listen, how to be present, and how to ask for help when I need it. I learned how to set aside frustration and show compassion even when it’s hard. I also learned that grief doesn’t only come after someone is gone it can happen slowly, in moments, when someone you love begins to forget who they are and who you are to them.

But through this experience, I didn’t just grow more responsible, I grew more human. I became someone who sees people’s struggles and wants to help, who knows that even small acts of support can mean everything.

Inspired by my godmother’s support group, I wanted to give back to other caregivers. I created a self-reflection journal and a daily planner designed specifically for people caring for loved ones with dementia. These tools help them log medical appointments, track moods and behavior, and check in on their own mental health, something that often gets forgotten. I also made bookmarks with book and resource recommendations and gave them to members of our local group.

But what touched me even more was seeing how our neighborhood stepped up. People took turns watching my godfather so my godmother could run errands or rest. They brought meals, called to check in, and simply showed up. They may not have fully understood what dementia is, but they understood the power of community. And that made all the difference.

Now I’m 18 and about to head off to college. I’ve been so involved in caring for my godfather, and it’s hard to imagine not being there every day. His condition has continued to decline, and caring for him is becoming more difficult. But I take comfort in knowing that he’s surrounded by people who love him, my godmother, my mom, our neighbors, and the support group that has lifted us all.

Now I’m 18 and about to head off to college. I’ve been so involved in caring for my godfather, and it’s hard to imagine not being there every day. His condition has continued to decline, and caring for him is becoming more difficult. But I take comfort in knowing that he’s surrounded by people who love him, my godmother, my mom, our neighbors, and the support group that has lifted us all.

In just 18 years, I’ve watched dementia affect three people I love: my grandfather, my grandmother, and now my godfather. It’s devastating. But it’s also shown me how strong people can be in the face of something so overwhelming. And it’s made me passionate about supporting others going through the same thing.

I hope to continue working with support groups, the Alzheimer’s Association, and other organizations focused on chronic illness. I want to make sure no one feels alone in this journey because I know what it’s like to feel unseen, unheard, and overwhelmed, from my godfather. And I know how powerful it is when someone reaches out and says, “You don’t have to go through this by yourself.”

That’s the kind of person I want to be and the kind of future I’m working toward.