Friday, April 30, 2010

Hard to read, but you should

by Kathryn Casey

My mom, LaVerne, died of Alzheimer's in June 2006. She'd been ill for nine years, and it was horrific.

My mother (here in a very old picture of the two of us) was hard-working, loving, articulate and funny. She enjoyed reading, dancing with my father, and she relished a good laugh. Mom was a secretary and one of the few women in our suburban neighborhood who worked outside the house. She never really liked cleaning or cooking, but for us she did both, never complaining. Nothing pleased her more than being with her family. Christmas was her favorite holiday, and for mom the only real roses were red.

Anyone who has lived through watching a loved one battle this devastating disease, one that slowly steals everything from its victims, understands what I'm talking about. Gradually, Alzheimer's robbed my mother of everything that made her my mom. In the end, Mom trembled constantly, her body never at rest. She recognized none of us. She had no peace and, unable to remember even her own name, no identity.

My mother, I'm convinced, was trapped inside her tortured mind and body. Part of her survived, caught inside, unable to find the words to come out. You see, there were those brief moments when she resurfaced.

The last time this happened was the spring before her death. My father and I had spent the entire day at the nursing home with her. Over and over again, I said to her, "Mom, it's me, Kathy." And then I'd ask, "Who am I?" She'd look at me, troubled, unable to answer.

Late that evening, St. Patrick's Day, I said it one last time: "Mom, it's Kathy."

This time she looked at me, her eyes clear, and she said, "Kathy, it's you?"

For the first time in a very long time, we talked. Actually I talked. I asked her if she understood what was going on around her, and she said sometimes she did, but that it was hard to find the words to communicate.

We had a glorious half an hour together, before the light in her eyes again faded. It was enough time to tell her that we all missed her, and that I loved her. "I love you, too," she said, the words taking great effort. "Always."

Recently, I read a frightening yet beautiful book entitled Still Alice by Lisa Genova. It's fiction, but it reads like a true story, about a woman, a renowned professor and researcher, who is diagnosed with early onset Alzheimer's. The novel takes readers from diagnosis through the next year or so of the character's life, and paints a picture of how the disease progressively dismantles its victims, destroying their lives and breaking the hearts of all those who love them.
For me, Still Alice rang true. It reflected what I experienced loving my mother and watching her slowly die: the heartbreak of so much loss and the joy of those small moments of triumph, like that final St. Patrick's Day evening. What Genova illustrates is what I saw first hand: hidden away deep inside, the person we love lives on.


Anonymous said...

Dear Kathryn,

As a nurse, I see this struggle every day. There is always a new patient, always a new family but the story never gets old, and I feel privileged to care for my patients and their families.

~ Dianne

Kathryn Casey said...

I know how much I and my family appreciated those who cared for my mother, Dianne. They made a remarkable difference in our lives at a very difficult time. Thank you for all you do.