Three Years with Dementia

My mother was a proud and stylish woman, a cultural byproduct of the glamourous 1940s-1960s social scene that, at least in the South, emphasized beauty, housekeeping, and hospitality. She was known for her prize-winning coconut cake, homemade ice cream, and being overdressed on all occasions. She waged war with the brown roots that emerged from her bleach-blond hair every four weeks, and while Clairol helped win that battle, it took a massive amount of time and effort. Make no mistake, mom was intelligent, perceptive, and complex, but those traits weren’t valued in her culture so she focused instead on societal expectations. Her goal was beauty – both literal and figurative – which made her subsequent battle with dementia even more brutal as it robbed mom of everything she once cared about, including her looks, friends, and social graces. Dementia stole my mother long before she died. 

As the adopted daughter of this once-proud woman, it was a surreal experience to visit the same county court where she had adopted me to “adopt her back” as conservator. Role reversal is common with aging parents, but this added a striking layer of complexity. Mom and I, once again, left court together on a life-altering trajectory.

Mom was furious about being placed in memory care. Some days felt hopeless, as it was hard to please an angry, aging diva. As a psychologist, I knew I needed to use her strengths to help her adjust.  As a photographer, it finally dawned on me that mom might like to be photographed, since she was once a model. Though I don’t know if she actually remembered being a model, what I do know is that her demeanor changed once I asked if I could take her picture. She was once again the center of attention and would proudly announce to her friends “This is my daughter. She loves to take my picture!” It was the unexpected gift of dementia that through this photographic adventure, my mother and I became closer than we had ever been.

My mother’s experiences are at once both deeply personal and profoundly universal, as all good stories should be. Her journey with dementia is now part of my DNA so I will pursue future projects on related concepts such as caregiver stress, financial and physical abuse, and life after loss to name a few. There are many avenues to explore, and my goal is to make this a career-long project – both as a photographer and a psychologist - until a cure is found. If I am alive when that happens, I will visit my mom’s grave and give thanks once again.

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23 / Sudden Recall

This was the next time I saw my mom: early the next morning at the local emergency room. She had woken up in the middle of the night. The night nurse found an explosion of blood all over her bed and had her rushed to the hospital. The CT scan revealed the worst possible news: her colon had ruptured and with a DNR in place I realized which way this journey was about to go. Everything was surreal, but for another blessed window of time, after the pain of the colon rupture but before it intensely sickened her, my mom was surprisingly chatty as we waited for a hospital room. And then I had the shock of my life. My mom turned to me in her weakened state and clearly and emphatically asked, “Where is Joe Sutton?” I couldn't believe my ears. My mother hadn't been able to remember my father's name in the past three years, even with rehearsal with her memory therapists, and yet here, during a medical crisis, she blurted it out loudly and as matter-of-factly as if she had known it all along. Immediately after that statement, she returned to her confused, mumbling state. It was so odd I wondered if I dreamed it but on the next day, after her fever set in, it happened a