As you journey through Alzheimer’s, be prepared to let go of parts of yourself along the way if you are going to survive this journey. For me, the most difficult “letting go” happened when I realized how my definitions of self were getting in the way of my caregiving. Letting go of these roles was a painful, necessary process for me.

When I first visited my mother, I structured my time to make it useful around the house. I arrived with my own agenda—a list of chores I decided was important. I approached my time with my mother as a set of tasks to be completed, like the fact that my parents’ once immaculate house was in total disarray—and it was my job to clean it. After I left, my mother would yell at my father accusing me of taking over her house. Learning this, I felt angry, ashamed, misunderstood, and unappreciated. In other words, I felt BAD.

In the end, feeling bad was the “wake-up call” that triggered the alarm clock in my head—the one that told me that something in my thinking was awry. I realized I needed to rethink my roles on this journey. What were my roles as daughter, sister, lawyer, caregiver, advocate, in this new landscape of dementia?

I discovered that each role was defined by my “doing,” by the ways in which I could be helpful. Underlying my role as substitute housekeeper, was the specific belief that if the house was spotless my mother was not lost; that somehow I could put her back together again if I could keep her house clean.

By imposing my agenda upon my mother, however well intentioned, I was mirroring her parenting role with me. I was turning our relationship into a series of tasks to be completed, this time according to my schedule. But, as I scrubbed, polished and dusted her home, I was inadvertently erasing an important part of my mother’s identity, needlessly agitating her. I also was making a common mistake: I was equating “doing” with love.

Looking back, it’s easy to see why I was so entrenched in my thinking. I had learned as a child to define my worth by output, my love by the things I did for others. But, did this definition serve me now? No, I felt bad.

It was time to change my interpretation of my role from doing to being. This wasn’t easy, but as I witnessed the changes in my mother, I saw how dementia had set her free of her definitions of self worth. Alzheimer’s had erased her ability to do, leaving her to thrive in this new place of being. My mother’s dementia presented me with the opportunity to set myself free of this definition, too.

And so, I put away the broom. I walked past the piles of clothes. I resisted the temptation to dust surfaces or to sort through piles of newspapers, magazines and mail. I stopped looking under beds and into toilet bowls for evidence of neglect. Instead, I just sat down, face to face, to be with my mother. My mother—not the house—became the focus of my visits.

Our visits started to feel better! I discovered the richness of our interactions came from the quiet parts: the time we spent laughing or telling secrets, reading books and looking at photos. My value was in simply being with my mother.

So, as you think about your caregiving situation, what are your roles in your family? Where did they come from? Are they getting in your way? If yes, let them go!

(Originally published in the May/June 2006 edition of CARE Connections,
Boulder County Aging Services Division)