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Neurology Now:
doi: 10.1097/01.NNN.0000418741.26552.b3
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Speak Up: The Mother I Knew

Fales, Corinna

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Author Information

Corinna Fales (corinnafales.com) has been a professional writer/editor since her first assignment in 1995, a field research report for the Library of Congress.

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Abstract

What Alzheimer's has changed—and hasn't.

These days, when friends ask how my mother's doing, I say she's enjoying her Alzheimer's disease (AD). That may sound shocking, but it seems to be the truth.

She hasn't always been this way. Her illness has been slow moving, and it's taken its toll on everyone. But my mother has been peaceful for several years now. After a life of sleepless nights and ceaseless worry, she's finally enjoying the small stuff, like her fingers and the edges of her blanket, which she examines incessantly.

Unfortunately, I don't get to see her much. She's in Iowa, near my brother. I'm enormously grateful that he's with her almost every day. The last time I was able to visit, I hadn't seen her for a long time and was anxious about how we would spend the time.

My brother dropped me off at the nursing home. To my surprise, my mother instantly fastened her eyes upon me, dismissing everyone else in the room. They left us alone together, and we spent the next five hours humming a four-note little ditty that she had made up and laughing. If I made the tiniest mistake, she would correct me with her eyes and a pointed nod of her head. At other times, she would just laugh and start over. But if I stopped humming altogether, she would begin to hum very loudly and fix me with a wide, hard gaze. This was the mother I knew.

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When her lunch arrived, she ate the dessert first, eyeballing me steadily. When I tried to get her to eat the protein portion of her meal, she just pointed at the pudding and said, “But this is so much better!” We laughed at that till we got tears in our eyes, and when she had finished eating, which took almost two hours, she resumed the endless examination and licking of her fingers and blanket.

Does this image horrify you? Why should it? It doesn't horrify her, and it has stopped horrifying me. Although the agony AD causes everyone is all too real, I discovered that my mother's spirit and character are largely intact. Her indomitable will is still evident, though flattened now—two-dimensional, in a way. Her joyfulness, wary watchfulness, sense of humor, sarcasm, love of fun, and need to control are also still there, though more brittle. She has “attitude” and still lets us know right away that we can't put one over on her. What's missing? Her anxiety, perfectionism, inability to sleep, and the excessive judgment she apparently internalized from her father—all traits she can surely do without. To put it another way—and strangely—my mother has retained her dignity. She still has pride and self-respect. Apparently, dignity has nothing to do with the fact that she's in diapers and has largely lost the cognitive faculties of her mind. No, my mother is not only her mind, or even primarily her mind. What I've had the great fortune to learn from her, and from AD, is that dignity issues from the spirit. And my mother still has that.

My old “Mutti” has had an extremely difficult life, and she is first and foremost a survivor. Now, finally, she seems at peace. It would be selfish and small-minded to minimize that and focus on what the disease has put us all through. What I couldn't have imagined was what I would learn. The fact is, once you can let go of how and what you think a person ought to be, you can see that my mother is really okay.

©2012 American Academy of Neurology

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