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July 14, 2014
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How Real I Used to Be: A Journey with My Mother through the Strange World of Alzheimer’s

Photo by Ross Brinkerhoff


In 2003 my mother started to lose her memory. It was subtle at first. We would walk on Avenue U and she would fail to come up with the name of an acquaintance or two. Nothing alarming. After a while her shopping list started to look like an art project, with drawings of mushrooms and strawberries next to the words milk and bananas. Soon the drawings faded away. In the supermarket she would say to me, “I’m looking for those red things with a little green piece and they come all together.” Sometimes it was obvious what she wanted; other times we left without the crackers or the American cheese.

Millie raged against the loss of her memory until she no longer knew the names of the foods in her refrigerator, until she no longer knew what the TV remote was, or could tell the difference between eyeliner and nail polish, between chicken and dirt. Until she no longer knew the names, or recognized her children, her grandson, even her dead husband. She went through all the stages: confusion over why she couldn’t remember things; anger; then white-hot anger; then, when the disease took over more of her brain, a softening, a sigh, as she sank into uneasy resignation and disconnect.

I ceased to exist to her beyond the very present. She couldn’t tell me where I was born or how old I was. She couldn’t remember the schools I went to, including my elementary school down the block. She couldn’t tell me where we took our family vacations, the street I lived on after I married, my husband’s name.

After my sister and I moved her to an Alzheimer’s home, in 2007, Mom said to me, “I think to myself how real I used to be.” And that is the truth of it for me; she used to be a gregarious chatterbox; she used to be obsessive/compulsive; she used to be a great friend to dozens of women; she used to be the best mother she could muster; she used to be an amazing grandmother. She ended up living in a tiny world, with only a miniscule door opened to the outside, without a care, without a notion about world strife, or relatives who she thought wronged her in the past—all her cares gone forever.

I would visit her and then go home and write. I would cry as I wrote because she would never read these words; she would not remember what a word was or a book or a piece of art. She lived in a world of simple language which she repeated over and over again: “I love you, I love you, I love you.” “Who are you?” “How is your house?” “Do you have children?” “Wonderful.”

As I watched the slow erosion of my mother’s brain, of her cognitive ability, of her independence, I learned to let go my expectations. She would never learn a new word, she would never be able to verbally communicate with me ever again. In time she “spoke” to me with a wiggle of her eyebrows or a grimace or a smile, or a look in her eyes that told me she was really my mom. She couldn’t utter a sound, but she spoke volumes.