“I do not speak as I think, I do not think as I should, and so it all goes on in helpless darkness.”
― Franz Kafka
The story opens with a happy extended family enjoying an afternoon by the lake. The grandkids eagerly seek affirmation of their exploits from Nana and Grampy. Helen, their daughter, smiles warmly as she watches her mother’s constant affection for her children coincide with shrieks of laughter. Grampy has the latest addition to the family on his lap, cooing at the baby, stroking its head and looking out at the lake. It is a perfect afternoon amid a beautiful week of vacation, the late summer sunlight falling into the water as the smoke from the grill temporarily clouds the east horizon.
Twelve months later, the memory of this day has faded for Helen and her family. It’s become shrouded by an irrevocable fact: Nana is gone.
Make no mistake, Nana has not passed away, at least in body. But she is no longer recognizable to herself and to her family. At home, instead of staring out at the horizon to watch the sun’s final rays, she stares at her hands, locking and unlocking her fingers in a constant symphony of movement. “Mom, how are you this morning?” Nothing, always nothing. Almost a year to the day from that lovely August afternoon sitting by the lake, Nana has succumbed fully to the scourge of Alzheimer’s disease.
How did this happen so quickly? Why did it have to happen to her? She was so vital, so healthy. Helen glances at her father. He is watching his wife twist her fingers into a knot. He reaches out to calm her but she pulls her hands abruptly away, dropping her head into her chest, eyes diverted from her hands to the floor. Her father pulls back, afraid he has startled her. His eyes mist over out of fear and frustration and of longing of warm summer afternoons. “Dad, you need to get some rest, you look tired.” He shakes his head, turns and looks out the window, tears rolling down his face onto his freshly-laundered shirt. This would be another day in a string of days that have no beginning and no end. They are all living in a state of ink-black darkness.
It began on a crisp early October morning. Helen was out with her mother and they were entering the local shopping mall. Children were running, pushing out the exit doors, and nearly knocked down Helen and her mom. Turning to check on mom, Helen saw her standing before the glass wall immediately adjacent to the entrance, gripping a thin window edge as if she were trying to pry it from its place. “Mom it’s ok. Just kids.” Her mother looked at Helen and said, “What kids?” Two days later, in the middle of a conversation, Helen’s mom completely lost her train of thought and, frustrated, stormed from the room. And so the journey began for this family and that persistent specter that is Alzheimer’s disease continues to slowly sap the life from Helen and everyone around her.
One year and nine months after the trip to the lake, Helen and her father stand at the gravesite and watch the trail of friends and family place roses on the casket. It seems impossible that this story began less than two years ago and now her mother was gone. She turns to her father and rests her head on his shoulder. He has been mortally wounded by his wife’s rapid decline. Helen expects more caregiving in her future. She hopes for a few more trips to the lake but is uncertain if happiness for the family is even possible thinking that the tainted memories of the place will overwhelm, even in the blissful setting. The bagpipes whimper “Amazing Grace” as she and her dad watch as a mother, grandmother and beloved wife is lowered into the soft earth.
The above vignette is fictitious but the essence of the story is not. It is a terribly sad story that is playing out across our nation – every 66 seconds, someone in the United States develops Alzheimer's disease and, globally, 44 million people have Alzheimer’s or a related dementia. During World Alzheimer’s Awareness Month, please remember those suffering from the disease and their committed caregivers and families. Nobody deserves this fate but many, often in silence, embrace the burden of support.
Until next time…
Tom Riley, CEO