Beginning at the End:
Portraits of Dementia by Joe Wallace

© 2019 Joe Wallace

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Terry Prokos

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On this night I spent a couple hours with with sisters Donna and Karen along with their mother Terry. We gathered to make a portrait of Terry but also to share some of her life’s story and to celebrate her in some small way.  Donna and Karen told me stories of how their parents met, camping at Salisbury Beach, what a great dancer their father was, how he died young, how feisty Terry was and is (she’s been in hospice for over a year), and how she successfully ran the family Esso station her entire life. Terry was tired and her pain meds were not working as intended. We fawned over Terry with attention and gentle touch - so grateful for even the slightest response. Eyes closed, Terry came in and out of consciousness. Rousing ever so briefly to respond or open her eyes. We tried to make a portrait, but settled into taking turns holding her hand and relishing the stories and memories instead. 

As I left Karen and Donna with their mother - I wondered about those few small moments that felt so impossibly huge and fleeting. Walking into the rain and darkened parking lot, a wave of emotion came over me. Heavy and frightening but also beautiful, rhythmic and mesmerizing. Was I happy to see Terry briefly cogent and recognizing her life she worked so hard to nurture, sustain and grow? Or was I sad that the recognition was so fleeting? Was I happy to see Donna and Karen’s love and devotion be rewarded with the slightest smile and acknowledgement? Or was I saddened that one day the recognition might stop? What is the "quality" of Terry's current existence? Is Terry tenaciously hanging on to life and giving spark and hope to herself, or hope to her family? Is it even possible to judge or determine that answer?

I've photographed dozens of people with dementias and their care partners. Many of them have written their last chapter, leaving their souls and memory for us to ponder and keep alive. I don't have answers but rather I have a collection of profound stories filled with family, love, heartbreak, courage, disappointment and joy. Death is a part of life for all of us and I'm so grateful to those who've shared their story with me.