Love Story with Dementia

I found this story in my journal from January 2021, one month after my dad had passed away from dementia, and I had just finished cleaning out the rest of his belongings that had been returned from the community where he lived.

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I began my journey with the disease in my early twenties with the Alzheimer’s diagnosis of my paternal grandfather. He did not have lots of money, nor did we have an understanding of the disease at that time. Our family reacted negatively to the diagnosis and did not know what to do. He spent the last years of his life frightened, misunderstood, and alone. When my dad was diagnosed with the disease over ten years ago, he expressed that his biggest fear was to end up like his dad. He spent many years fighting against the disease, trying to maintain normalcy. Pushing himself, not accepting what was happening, and fought hard against what he thought his destiny would be; life with no purpose, alone and helpless.

In 2018, my parents moved to live closer to me here in Middle Tennessee. Some days he didn’t know where he was, still thinking he was back in California. The hardest part of the transition was watching him become disconnected from his hunting and golfing buddies. Despite declining, those friends who loved my dad knew he was still with us. My dad was the true patriarch in our family, the faithful provider in all senses of the word. As he declined, he struggled to give up the management of the finances, upkeep on the house, and all the “Dad” things he loved to do. He felt that he wasn’t pulling his weight and had no use to us all. Then slowly, my relationship began to change with my dad. Rather than being the person that solved all the problems for the family, we became a team. We authentically came to the disease with all of our imperfections. We yelled, hugged, cried, and shared all of our humanness in these years. The condition slowly took more and more of my “old” dad away, but a new man emerged. A loving, talkative, expressive man that I did not recognize.
One said he loved me and was proud of me, maybe not in those specific words but with his glances and touch. Learning how to navigate and respond to this new version required reprogramming my story. Now this man, my dad, is giving me the emotional support I ached for as a child. Was this the gift of this disease? To allow my dad to soften and be all I had wished for in a dad. Why now? Why not earlier? Hoping not to squander away this time, we talked, not always in a linear way and not always productively. Since it was difficult to communicate for both of us, we listened harder.

Now that he is gone, I replay those conversations in my head. Some make me smile, while others cause a tear to stream down my cheek. The other day while going through all his stuff, the movers returned to us from his apartment in the memory care community. I found a letter that he had written my sister. Telling her that he loved her and always had her best interest in mind, the written pages of incoherent sentences and half thoughts was clear what he was trying to express. My first inclination was, “where is my letter?” Then I slowly realized that he didn’t need to write me a letter. I got a live in-person letter every day for the last three years. My love letter to my dad now that he is gone is that I feel I honored him and his wishes and gave him the dignity and love that made his life full of purpose. We ensured that his fear did not come true. I appreciate all my dad gave me throughout my life, shelter, food, never living without, and a strong work ethic. But Alzheimer’s gave me a man who I may have never gotten to meet. So my love story with the disease continues, and I hope that even with this disease and its challenges, families get to meet another part of their loved ones that they may have not even known existed.