Within Dementia, Love Remained

I remember the challenges and the fears, but it was the depth of our bond that united and sustained us — and which defined our journey.
October 30, 2024
Patti LaFleur was a caregiver to her mother who was diagnosed with younger-onset dementia. LaFleur works at Lorenzo’s House, an organization focused on advocacy surrounding younger-onset dementia. You can learn more about LaFleur’s advocacy work through her Instagram @misspatticake
My journey with dementia began when my beautiful mama, Linda, was diagnosed with younger-onset dementia 12 years ago. She bravely walked with the disease for 10 years before she passed away in 2022. Our journey together profoundly shaped my life and taught me that although my mom eventually did not know I was her daughter or that my name was Patti, our love never wavered. We found new ways to express our love.
Mama illuminated every room she entered. And still, beneath her radiant exterior, brain change appeared when I was in my early 20s. For over 10 years we witnessed heartache, but still we shared countless moments of connection and love. I remember the challenges and the fears, but it was the depth of our bond that united and sustained us — and which defined our journey. As I walked alongside Mama, I found a new kind of strength. I became her advocate and unwavering champion. I discovered the power of empathy, compassion and community.
We found ways to love, laugh, and connect each day. We danced in the kitchen. We baked together, albeit with modifications; we would use simple, familiar recipes with fewer steps and ingredients. I would often pre-measure the ingredients so that she could focus on the cooking and baking. And we would make it a sensory opportunity — smelling the vanilla, feeling the dough, or mixing the ingredients.
We created abstract art which allowed her to express herself creatively in different ways — we’d spread out bright paints, brushes, and collage materials with no rules or expectations. My mom would swirl her brush, lost in the motion, sometimes smiling as the shapes on the canvas took on lives of their own. Each stroke was her voice, her way of connecting with us in the moment, even when words were hard to find.
We held hands and I reciprocated the love she had given me: My parents adopted me as a baby, and before that, after she found out she couldn’t have children biologically, she had adopted my older sister. She loved us unconditionally and celebrated us every day, making sure we always knew how special we were to her. We celebrated my birthday, the day she adopted me, and every day in between, with love and dancing. She held me and welcomed me to the world — and now I had the opportunity to be there, holding her hand for her last breath.
I carry lessons learned and memories cherished. And I am now taking these lessons into my role at Lorenzo’s House, a virtual organization offering free programming to youth and their families across the world to empower them as they walk with younger-onset dementia. It offers an array of holistic support, shifting the narrative from isolation to connection, stigma to strength, and darkness to light. I am the Youth and Lighthouse Initiatives Lead and my role is to walk alongside families affected by younger-onset dementia every single day. And in this role, I carry my mom in my heart — and love like Linda every single day.