with the kids. He’ll be back soon.”
I hand her a sheet of paper and take one for myself. I spread the crayons out and say, “Let’s draw.”
“Why?” she says.
“Because it’s fun,” I say, touching her hand and looking into her eyes, just as I imagine a muse might do. “Because you enjoy making art. You’re good at it.”
After I left home for college, sketching and painting became Mom’s creative mainstays. She produced hundreds of paintings, often bringing to life old photographs that captured a snippet of family history: Dad’s father appearing wickedly self-confident in a game of poker; her own mother, before she immigrated to America, as a shy young woman with an upswept Gibson girl hairdo; her grandchildren dancing around my den in a mad-cap talent show. But she hasn’t touched a brush or pencil in several years, and Dad has mourned mightily over her abandoning this passion.
“Where is . . . ?” Mom asks.
“Let’s make a picture for Dad,” I say. “He’ll be thrilled.”
I hand Mom a yellow crayon and I pick up a purple one. I draw a series of squiggling lines. I add in a green, then a blue. I envision Dad’s beaming face when Mom hands him her sketch of yellow roses. I imagine his warm hug and his grateful, whispered words, “Thanks, Debbie. I knew you could do it. I feel like your mother’s come home.”
My wild, colorful lines fill the page. Finally, I glance up, ready to admire Mom’s work. But all I see is a blinding sheet of yellow. She has scrubbed the yellow crayon across the page. No flowers, no independent lines, no blending of colors. I bite my lip, tasting bitter failure, and imagining the look of despair on my father’s face.
That was before I had learned to let go of Mom as a representational artist and embrace her mellow yellow creation. That was before I accepted the challenge of journeying to my mom’s current world instead of struggling unsuccessfully to drag her back into mine. I finally did let go and embraced my mom as she was. Mom learned to laugh at her forgetfulness; she learned to communicate with smiles and gestures; she learned the art of living in the moment. And I learned along with her.
Today, if I could once again sit beside her and color, I would simply enjoy the process and not set myself up as a failed Super Muse. I might just say, “I love the brightness of that color,” and not yearn for a bouquet of roses that would prove Mom was the same as ever.
I might see if she and I could draw something together. We’d take turns making lines on the paper, sketching out a nonverbal dialogue. I’d play some of her favorite songs while we drew, and we’d sing along. I might include some soothing lavender tea, accompanied by decadent chocolate chip cookies. Whatever we did together, I would cherish that shared time.
“People with dementia are my best teachers, constantly offering me insights and giving me new ways of seeing, hearing, and experiencing things.” —Teepa Snow
Daily visits and interactions are a vital part of care partnering. “Our responsibility is to connect with and bring people out,” says Cameron Camp, PhD, coauthor of A Different Visit. “Activities allow us to rediscover the person who may be hiding behind his or her deficit.”
A good activity should be easy, mutually pleasurable, appropriate for ability, age, and gender, imbued with some meaning, and have no deadline and no pressure. You don’t need any special artistic talent to facilitate and enjoy these ideas. Here are some ways to get started.
“Activities allow us to rediscover the person who may be hiding behind his or her deficit.”
Ask Others to Join You
“Our basic instincts include discovery and invention, and thus creativity. These abilities are hard-wired, and people living with dementia can still draw on these skills.”
Though John Zeisel has a doctorate in sociology from Columbia University and has studied and taught in prestigious colleges and universities, he says several of his most significant teachers were persons living with dementia. Until he was in his forties, John hadn’t known many people living with Alzheimer’s. He worked in environmental design, and an opportunity to redesign a memory care facility changed both his career path and his life. He grew fascinated by the openness, sensitivity, and creativity of those living with memory loss and began studying neuroscience.
“Our basic instincts include discovery and invention, and thus creativity,” John says. “These abilities are hard-wired, and people living with dementia can still draw on these skills. They are often exceptionally perceptive, increasingly creative, and have high emotional intelligence. It’s our job to uncover and embrace their abilities so they maintain dignity, independence, and self-respect.”
Many care partners struggle through a period of grief, helplessness, and anger when a loved one receives a dementia diagnosis. But if care partners and families can move from despair into hopefulness, they can access their natural curiosity. Hope, to John, means knowing that we can make a difference in the person’s life. With hope, we all become creative and wonder, What is going on and how can I make a difference?
John, the author of I’m Still Here: A New Philosophy of Alzheimer’s Care, often facilitates conversations about the “gifts” in the care partnering experience. He suggests a family, along with significant friends, get together and ask the person living with dementia, “How can I make a difference for you? What can I do to make things a little bit better?”
Once all have responded to this request, they can all then discuss, “How can we support and help each other as a group?” John calls this a Circle of Hope.
“Every family member and friend can make a difference in the life of the person living with dementia,” John says.
Focus on Personal Preferences
Focusing on your partner’s passions helps you select and adapt meaningful projects. Jackie Pinkowitz is a pioneer in the international Person-Centered Living movement (PCL), which sees people as whole, regardless of disabilities, including dementia. According to PCL, all people with disabilities are entitled to choice, privacy, respect, and autonomy. Any assistance they need should be centered on their personal preferences and values.
Focusing on your partner’s passions helps you select and adapt meaningful projects.
“Ultimately, this philosophy means being kind and sensitive and honoring people’s right to make their own choices,” Jackie says. “With this attitude of openness, you can help people live fully with dementia, enriching their lives with meaning, community engagement, and social relationships.”
Issue the Invitation
As an artist, Sarah Zoutewelle-Morris was excited about her new job as an activities director in the Netherlands. Previously, she had been part of a performing troupe that staged artistic events in healthcare institutions. She was used to instantly connecting and making people smile. But in the care setting, when she took out her art supplies and invited people to join, the residents backed away, saying, “That’s for kids,” or “I don’t want to do that.”
“I learned I couldn’t confront people with creativity too soon,” she says. “I couldn’t go in as the artist; I had to figure out
