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The Evolution of a Caregiver

2013.6.11 paintingAs my parents reached their mid-80’s, memory loss, Alzheimer’s and dementia emerged and began to take their toll. I found myself in the all too common position of becoming a caregiver.

Admittedly I was a reluctant caregiver. I begrudged them my time (my father could still push my buttons) and I resented the person who had “taken” my mother Jean’s place. My visits were perfunctory and I was relieved to leave. How that must have hurt.

When my father and Mom’s devoted companion of 66 years died, we began taking her to a painting class offered by Elderwise at Horizon House. Surprisingly her paintings were good, always interesting and sometimes remarkable. She had never painted a day in her life but dementia seemed to silence her inner censor. The art invited me in—past pain, past denial. Each week I was eager to see what she had created and each week I marveled at their invention and wit—a window into thoughts and emotions she couldn’t express any other way.

As I spent more time with her, I began to let go of the person who used to be and embraced the person who was with me now. Thoughts of loss disappeared. I enjoyed her company and looked forward to my visits. She was still Mom, distilled to her essence

Even better I became a part of her new family in supported living. With Mom and her companions, I discovered the peace of the moment, relaxing in an oasis of calm in the midst of a stressful life. No worries, no deadlines, no regrets—just the moment.

I joined Mom on her daily rounds as she greeted members of the staff and residents alike with a smile and a compliment. “My but you look beautiful,” she would say. And they in turn loved her.
I slowed down and adapted to her pace. She played the piano with her own distinct medley of Silent Night morphing into Polly Waddle Doodle All Day. We played Scrabble. When she could no longer form words, we counted the score and when that was no longer possible I put the game away. She asked me the same questions over and over and it became a game for me to think up new answers which she was always eager to hear. We sang. I would start the song and she would finish. Same for nursery rhymes. We marched.

I learned the importance of touch. I began giving gentle neck massages to the ladies of Supported Living. “Heaven,” Jane would say. “Do you tuck your wings in a handkerchief when you aren’t here?” asked Gloria. Smiles all round with each taking as much pleasure in her neighbor’s enjoyment as her own. Soon people all over the lunch room eagerly awaited their turn. What fun!

Caregiving is not always easy. My father’s experience with Alzheimer’s was far more difficult. But if I knew then what I know now, it would have been so much better. I would have realized that he was bewildered and terrified of being abandoned. I know now that I should have just been there, listening to him, sitting with him, massaging his neck, smiling, letting him know by my presence that he was not alone. That I would not leave him.

Caregiving can be a gift. Be patient, be present and together you may find world of mutual discovery and joy.