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Caring for the Caregiver

by Lucie Arbuthnot

“I’m extra!”
My mother’s smile was radiant as she greeted me at the door on my regular Friday morning visit. She was by then almost a decade into her journey with Alzheimer’s disease.
Guessing that her happy expression was a substitute for words she could no longer retrieve, I responded with equal enthusiasm, “Yes, you are extra!”
But her waving arms and frown clearly told me I had misunderstood.
“I’m extraordinary…” she started again with undampened enthusiasm.
“You bet you’re extraordinary!” I interrupted, delighted at this rare polysyllabic pronouncement.
Again she waved off my response.
“I’m extra-ordinari-ly glad to see you,” she finally said, her Herculean task accomplished.
A red carpet and brass band could not have made me feel more welcome.

During the 25 years I was a college professor, my job was to teach. Now that my mother had Alzheimer's disease, it was my turn to learn.
I spent Fridays with her during the last years of her life so that my father, her full-time caregiver, could have a few hours to himself. During those visits my mother taught me to pay less attention to what she had lost – her memory about the recent past – and more attention to the many ways she remained the same: intellectually curious, witty, and gracious.
We simply refocused. Instead of discussing current politics or recent books, as had been our custom, we talked about the twenty years we had lived in Switzerland, her life as a university librarian, her happy 60-year marriage to my father, and our summers on the coast of Maine. We spoke French together, listened to the music of J.S. Bach, and sang familiar hymns.

My mother was not always cheerful and upbeat when I arrived. Some days she greeted me with mere practiced good manners. Her polite but perfunctory, “How are you?” tempted me to respond, as she had taught me years ago, “I’m fine, thank you. And how are you?”
One day, however, I answered truthfully that I was disheartened by a difficult week at work. To my surprise, this candor produced unexpected magic. My mother, whose short-term memory lapses increasingly led people to treat her like an invalid, would sometimes act with uncharacteristic helplessness. Now an earlier identity resurfaced. “I’m so sorry,” she said with the heartfelt concern of a mother invited to provide understanding and support. “Come tell me about it.”  

Only then did I realize that by waiting on her and catering to her needs, I had robbed her of the gifts she still had to give. So I learned to ask for her help and advice. When I had finished washing the lettuce for our lunches, she would spin it dry in her familiar Zyliss salad-spinner, her body remembering the gestures her conscious mind had long forgotten. When she no longer knew how to set the table for lunch, we made decisions together. “The Geneva plates or Auntie Gene’s set?” I would ask. And we would happily discuss the pros and cons of each, digressing at length about Geneva and her long-departed favorite Auntie Gene. When her energy flagged, we sang her Swarthmore College alma mater song, whose words she always remembered better than I did.
I also learned to respond as much to her feelings as to her words.
“Where’s Charlie?” she would anxiously ask every few minutes when my father was out running errands.
“Charlie?” I would respond, side-stepping the question. “You mean that handsome man you married over sixty years ago in Georgetown, Maine? Didn’t you tell me that the lilacs in our meadow were still in bloom on June 16th?” And we would be off reminiscing about weddings and Georgetown and lilacs still blooming in June.

Were our times together always easy? No. But many difficulties were eased when I was able to focus more on my mother’s remaining abilities than on those she had lost, when we evoked earlier events that she could recall rather than recent ones she had forgotten, and when the words she could no longer remember became less important than the feelings she expressed with a smile or a hug.
When people asked how I could to see this Alzheimer’s glass as half-full rather than half-empty, I told them I was blessed in several ways.
My mother and I had enjoyed a history of mutual respect and affection which didn’t evaporate simply because she developed Alzheimer’s disease. In addition, the excellent resources of the Alzheimer’s Association helped me understand the progression of the disease, so I wasn’t shocked when my mother embellished stories because she couldn’t recall actual events, or when she started eating with her fingers because she no longer remembered how to use a knife and fork.  

And finally, I knew she had lovingly cared for me when I was a child. She had helped me wash and dress, had paid more attention to my smiles and tears than to my unintelligible babblings, and had focused more on my needs than on her own.  
Now it was my turn.  

      Submitted by:
      © Lucie Arbuthnot, 2009


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Support for Caring for the Caregiver is provided by:


Hospice of Southern MaineMercy VNA Home Health & Hospice Home Instead Senior Care

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