Are You In There, Mom?

I read a great book recently. It was entitled Dancing With Rose: Finding Life in the world of Alzheimer’s—One Daughters Hopeful Story by Lauren Kessler.

Lauren’s mom died from complications of Alzheimer’s. In trying to make peace with her mother’s death, Lauren went to work in an Alzheimer’s inpatient care facility and wrote about the residents’ lives, the workers lives and the hope that springs eternal—even in the face of such a devastating disease.

The book introduced us to Rose, one of the more highly demented residents—Rose went from neighborhood to neighborhood moving residents’ items from room to room—She shuffled, did not make eye contact and was (according to Lauren) “hard to love”. Lauren found a way into Rose’s world by noticing that she kept beat to music—One day, Lauren stood up and started waltzing with Rose—that was a way into her world. Marianne used to be an administrator and still dressed each day for the office and sat outside of her room in her business suit waiting to interview prospective employees—Lauren became a perspective employee and sat through interview after interview. There are other residents and other stories but the recurring theme? Finding a way to communicate with Alzheimer’s patients—on their terms.

What a wonderful book as it helped me to celebrate my mother’s life rather than continuing to focus on what she has become. Somehow or other, these residents (not patients) were being given a life that was comfortable for them. They were able to keep some semblance of dignity even when the most elementary functions had to be performed for them. They had moments of clarity and joy, a staff that cared about them (most of the time) and family members that visited (some more than others).

Sometimes I think the sadness that I feel is all about me and how I feel watching my mother go down this path. When I’m having a good day, I’m happy that my mother is not struggling with what’s happening to her as she did in the early days of this disease—when she thrashed about trying to remember things and cover up things she didn’t remember. When she thought we were scheming against her. When she watched us—not trusting. Luckily, she’s past most of that now. She still wants to go home and talks about that constantly. Her memories are in Hollis, Queens during happier times for her. We try to show her that she is home—pointing out familiar things in her apartment that wouldn’t be there if this was not her home. Then we give up and just distract her—sometimes it works—sometimes she just forgets about it.

The message from this book and my challenge? To find a way into my mother’s world—not to force her back into mine.