Before Ann Farris became an Education Specialist with Alzheimer’s Resource of Alaska (ARA), she was a caregiver to her mother, Marlene, who was living with Alzheimer’s disease. We think this story is as relevant and touching today as it was when she wrote it nearly 10 years ago.

It’s the end of another day of caregiving: rising early, helping Mom fix her hair, making sure she doesn’t fall or pass out, answering the same question multiple times in a span of 10 minutes, helping her change a disposable pair of underwear. It is a dance of sorts—routine movement throughout the day.

Such has become my experience in assisting my mother, who has mild-to-moderate dementia/Alzheimer’s disease, [a type of dementia]. You may know of what I write here. It is one of the most loving and heartbreaking things a child can go through with a parent. Though humbled to be able to return home to help the woman that lovingly raised me, I often sit and just look at Mom and wonder what’s going on in her brain. What is she thinking? How is she processing her surroundings? What’s dancing around up there?

Tonight, I took a walk outdoors to work off the day’s fretting. As I took in the sights and sounds of my backyard, I realized that I heard music playing in the distance. I stopped, stared in the direction of the barely decipherable but quite audible tune, and attempted to process what I was hearing:

Then, it dawned on me: Maybe that’s how Mom processes her surroundings. From her perspective, something may seem distant, barely understandable unless she stops to really try and think about it. Many times, she doesn’t completely process the experience, and in the end feels left out, excluded, though the memories of past experiences can return to ease some of the frustration.

Alzheimer’s wreaks havoc on the brain. No doubt about that. I would compare it to trying to dance a waltz to a tune in 4/4 time [when the waltz requires a 3/4 time]. It just doesn’t jive much of the time. How would Mom describe it? She has admitted to me that in many gatherings, she feels left out. She’s even cried in frustration that going through this is the hardest thing she’s ever experienced. Maybe she would describe it as in the poem, “Waltz Time,” by Chrys Salt (below). The poem poignantly details the dance of forgetfulness, the “Alzheimer Waltz.”

I wonder: how do you help someone who knows that he or she is doing this Alzheimer Waltz? How do you honor that person’s feelings, yet acknowledge that this is now the reality? I humbly recommend the following: Try to “break-in” to dance with your loved one. Remind the person that she or he is not this disease, help your loved one recall times of laughter and love, and assist your friend in maneuvering from confusing footwork to a sense of meaning and even purpose for the life that is now.

God is stirring something in me, and I know it is a calling to raise awareness of Alzheimer’s disease through the arts, and to empower those with Alzheimer’s and their caregivers to express themselves in a way that is rewarding and whole. God be with us all as we learn this dance, this Alzheimer Waltz.