Navigating Alzheimer’s

A journey I didn’t want
by Nancy Slote

It was a journey that I didn’t want! My husband Michael was diagnosed with Alzheimer’s in 2009, just a few years after he retired. I knew that something was wrong. Was he listless because he was still transitioning from work to retirement? Where was his righteous anger at the newest political scandal? What happened to his idea for an educational nonprofit for kids entangled in the criminal justice system? And why did he get lost driving in downtown Bellevue? How hard is it to get from point A to point B when the streets are a perfect grid?

It never occurred to me that he had Alzheimer’s. I had no direct experience with anyone experiencing memory loss. Fortunately, our therapist understood the picture and gently pushed him to get tested. I just wanted an answer. Once I knew the “enemy,” I would “fix” it. Or so I thought.

Thus began the journey that I didn’t want. I knew that I needed to tend to myself emotionally and physically. I didn’t want to be one of the caregiver statistics, but I felt that I didn’t have the time, between working, managing the caregivers, finding activities for Michael, paying the bills, running the house, and tending to my far-flung children.

Deep down, I knew that those were all dodges, but I wasn’t yet ready to look at my anger and fear and grief. I’m not sure what changed. I do know that as Michael lost more and more of himself, our connections became increasingly tenuous. Somewhere, deep inside, I knew that I had to make new connections with him. I owed that to our love, but I recognized that it would be good for me too. That same wise therapist gave me the space and time to talk about my frustration, my loneliness, my guilt, and even my petty complaints about smelly clothes and bodies.

My adult children had their own journeys. I wanted to help them process their own loss. It was a tough sell, at times. They had their own new families to tend, but in order to help them, I needed to be able to present myself authentically. How could I ask them to look at their own grief if I couldn’t face my own? I’m still not sure if they gave themselves enough time, but I tried very hard to give them the space and permission to explore their feelings. Besides—I wanted to be able to laugh and cry and to curse the universe with them.

The journey that I didn’t want took ten years. In the last two years of Michael’s life, as he lost his language and his mobility, I began to find those new connections. At first, I read out loud, especially the Beat poets whom he loved. As those became too complex, I turned to simpler stories. Ultimately, I started to read picture books. The content didn’t matter. What did matter was my voice and presence.

When reading no longer seemed soothing, I relied more and more on music, playing the Bach whom he loved on the out of tune piano and practicing my choir pieces. No one at his memory care facility cared what I sounded like—I even invited them to join in and brought a small group from the choir to sing. Music was magical, especially during those late afternoon sundowning hours, when Michael’s fellow residents wove different paths around the living room, creating multiple, separate orbits.

I also learned to just sit quietly on the couch, holding his hand and rubbing his back. I no longer needed to talk. So many books offer the advice about touch, and for Michael and myself, touch really did remain to the end. And the amazing part was that it calmed me down too. It just felt really good to sit there silently and close and touching on that beat up, old couch.

While it was a journey that I didn’t want, I did find myself at a very different place at the end of it. It’s been two years now since Michael’s death. The specifics of the journey have faded, but I still feel a powerful connection, as strong as the connection sitting on that old couch. And I smile.

Nancy is Older Adults Program Manager for The Seattle Public Library. She has worked as a manager and reference librarian at the branches and at the Central Library since 2006.