Thursday, October 1, 2009

Her name was Pearl.

Her name was Pearl. She was one of the first persons to move into our brand-new memory care community.

Pearl was gentle, warm and loving. She was in the early stages of Alzheimer’s disease, even though she was only in her early 60s. We’d frequently find her in tears, saying, “I don’t know what’s happening to me,” or “Why can’t I figure it out?”

We would hug her, and assure her that, while we couldn’t answer her questions, we would be there to help her through whatever lay ahead.

After a while, we’d simply give her a hug and a smile every time we passed her. She’d lay her head on our shoulders, put her arms around us and simply soak up the affection and support.

Her daughter, a bright, accomplished young woman, faithfully visited nearly every day. She’d often leave with tears in her eyes. We became friends, as we supported her, too.

One day, a few months into Pearl’s stay with us, her daughter asked if she could talk to me in my office.

As she shut the door behind her, she said, “You don’t know my mother.”

A little mystified, I replied, “I know that this isn’t the mom you knew growing up – the disease is changing her.”

She said, “No, you don’t understand. The entire time I was growing up my mother never once hugged me. She never once said she loved me. She never, ever simply held me on her lap.

“Now, I watch my mom, every single day, hugging you and laying her head on your shoulder while you comfort her in her disease.”

Her words broke my heart. Tears ran down her shoulder as she talked about her childhood, and her mother’s focus on high society and her career.

We talked a little about the caregiving journey. About getting to know this new person her mother was becoming, and learning to love her and relate to her in a brand new way. At the end of our conversation, we were both emotionally wrung out.

I went home that night and gave my own kids extra long hugs. I told them that I loved them, and just sat and listened a little longer than usual.

Over the years, Pearl continued to be warm, loving and funny as she progressed with the disease. Her daughter remained her faithful daily visitor, often helping with her care or simply taking her for a walk. Her story became intertwined with ours, as her needs increased and our caregiving tasks changed.

We were honored to care for Pearl to the end of her life. After she passed, as we shared the daughter’s grief and sense of loss, we also celebrated her journey with her mother, getting to know a different side of her mom at a stage in life when she least expected it. Both Pearl and her daughter learned to love – and show that love – in an openly affectionate way that was completely new to them.

I’m confident that we shared the belief that, for us all, the experience of being Pearl’s caregiver was one that added to our lives, and created joy for her as well, right to the very end.

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