Paradoxes of Life with Alzheimer's

Sometimes families I worked with would tell me that the person they knew, the person they once loved or, in some cases, felt like they "owed allegiance to" no longer existed. They saw their loved one as an empty shell and said that it helped them make all the disappointing choices they needed to make at the end. Their loved one no longer knew them, knew where they were, or even recognized themselves in the mirror.

And yet, while I hated to disabuse them of what they believed to be a "truth," if they asked me I had to tell them what at least three caregivers in five years told me. The story was eerily similar for all of them. Their loved ones had not recognized anyone for years and one didn't even speak. But on their death beds, they suddenly had a moment of incredible lucidity. They looked straight into their primary caregiver's eyes, called them by name, and thanked them for everything. It gives me goose bumps every time I think about it.

Alzheimer's appears to strip away a person's identity but my belief is that it simply strips away the outer trappings—the personas, the socializations, even the beliefs about who one is. And yet the inner essence of the human being still exists. It can awaken spontaneously when one doesn't expect it, be accessed through a smile, familiar song, the right kind of touch. And sometimes when the old masks come down, aspects of the person's being become even more clear.

An excerpt from my book:

Lisa describes her mother with great warmth and affection. Family photographs show Verna to be a vivacious beauty with a twinkle in her eye, always dramatic in appearance because of her inflection and expressive body movements. In her final years she liked to wear wonderful hats that showed off her deep blue eyes and thick white hair. Lisa says her mother loved “beauty, mischief and adventure.”

Verna Mae was born in Ridgway, Pennsylvania in 1912. She was an accomplished pianist but grew up in the shadow of her sister, a well-respected conductor. Verna never played in public until Alzheimer’s Disease robbed her of her inhibitions but, from that point on, she played piano constantly and loved to dance. She was a great favorite wherever she went, always ready to grab an arm and twirl around the dance floor. People described her as the “eternal 16-year old”, always sprightly and girlish. It was a paradox of Verna’s dementia that she needed to lose her mental faculties in order to express her most authentic self. As Lisa describes it, her mother’s essence remained intact to the very end and, in fact, became more pronounced. She couldn’t recognize anyone except for Lisa at her death but never lost her appreciation of love and beauty.