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ОглавлениеTake a New Look at the Yellow Crayon
Take a New Look at the Yellow Crayon
“To live a creative life, we must lose our fear of being wrong.” —Joseph Chilton Pierce
Before he leaves for his outing, my father beckons me out onto the ramshackle porch of the rental cottage. He solemnly hands me a tablet of thick, white artist’s paper and a pristine box of twenty-four crayons.
“I want you to get your mother interested in art again,” he says. “I believe she can still draw and paint, but she resists when I mention it. You’re the only one who can help her.”
My parents, my brother’s family, and my two daughters and I are on a family trip to Hot Springs, Arkansas. Mom has been struggling with forgetfulness and odd behaviors (or rather, Dad has been struggling with her forgetfulness and odd behaviors) for a couple of years. As long as Mom is near Dad, she seems happy enough, paddling around in the swimming pool, being near her young grandchildren, and reminiscing about her earlier life. But when Dad takes even a short break, Mom’s mouth tightens and her eyes search wildly. “Where is . . . ?” she asks, over and over again, twisting her hands.
Today, my father is joining my brother and the children for boating and tubing. Since Mom doesn’t like such heat and noise, I volunteer to spend the day with her.
I nod gravely when my father hands me the “art supplies.” I seriously believe I, Super Daughter and Muse, can fulfill my father’s request to reunite my mother and her passion for art.
I haven’t yet accepted Mom for who she is now. I’m still grieving the loss of the mom I’ve always known, and I earnestly believe that the best possible idea is to return her to the artist, mother, wife, and grandmother she used to be.
That afternoon, shortly after Dad leaves, I lure Mom to the small Formica kitchen table with coffee and chocolate chip cookies.
“Where is . . . ?” Mom asks, knotting together her fingers.
“He’s out with Dan and the kids. They’re going boating,” I tell her. “He won’t be gone too long.”
Mom stares at me accusingly.
“Where is Paul?” she says, her voice wobbly.
“He’s 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 ways to invite people into a project.”
In South Dakota, Ari Albright, an artist in residence in a dementia unit, has had similar experiences.
“If I said, ‘Hey, want to make art?’ people shied away, saying, ‘I can’t draw, I can’t paint. I don’t know what to do,’” Ari says.
But if Ari asked, “Do you have a moment to help me?” or “Would you give me a hand?” people were interested in assisting.
“It’s all about issuing the right kind of invitation,” Ari says.
Offer Choices and Encourage Ideas
Whenever possible offer two or three choices. “Shall we start with the blue, red, or green paint?” “Shall we listen to ‘Blue Moon’ or ‘Fly Me to the Moon’?”
Slow down and allow time for your partner to process. “Before you help, let the person tussle with the task a bit,” Ari suggests.
Encourage whatever ideas come up.
“The least intrusive way to communicate is by signaling someone with a gesture or expression,” Ari says. “When you need to speak, gently repeat words as often as necessary. Or you can show by example, placing the person’s hand over your hand as you draw, paint, or put something together.”
Give people notice as you’re winding down the project. Thank them for their help and offer a low-key transition, such as “I’m putting away these materials now. It’s time to clean up the table and get ready for dinner. Will you join me?”
Say Yes and Create a Failure-Free Zone
“That’s salad dressing, not milk. Don’t drink that.”
“No, we’re not going to see Sissy today; we’re seeing her next month.”
“Watch out for that pen; you’re getting ink all over your shirt.”
What if you were constantly being told no and assured you were mistaken, clumsy, or wrong? Care partners have the difficult balancing act of keeping people safe while nurturing their self-esteem and independence.
With activities, you can invite unfettered self-expression by suspending judgment and saying yes to ideas.
Imagine knowing what you want to do and not being able to communicate your wishes. For example, Emily wants to step outside to look at the roses, but the words are stuck in her throat. So she walks down the hall to the outside door. A woman steps into her path. The woman’s smile is too big, and her voice is too high.
“Where are you going?” she asks.
Emily gestures toward the door but the woman shakes her head.
“No, you can’t go home,” she says. “But you can go to Bingo. Come back this way with me.”
The woman doesn’t understand, but Emily cannot explain herself. “The roses,” Emily wants to tell her, “I want to smell and touch them. They’re just like the ones I used to grow at home.”
Teepa Snow, an occupational therapist who teaches dementia care across the nation, understands how frustrated Emily is feeling. For years, she has worked with people who have trouble using words to communicate. She knows that the tone of voice matters and authenticity is key.
“I imagine how I would feel if I couldn’t express my needs and someone was telling me, ‘No, no, no,’” Teepa says.
With activities, you can invite unfettered self-expression by suspending judgment and saying yes to ideas. This removes the risk of embarrassment, reduces the fear of making a mistake, and helps your partner feel creative, capable, and loved.
Redefine Being Helpful
Teepa has also seen well-meaning caregivers be too helpful. That’s what happened to George.
George loves jigsaw puzzles, but no matter how hard he tries, the pieces simply won’t fit together.
“Don’t worry, Dad,” says that nice woman who takes care of him. “I’ll help you.”
She quickly fits a whole section together. George knew he was getting dumber, and this proves it. Why should he even bother to do another puzzle? He’d like to have just a little assistance, but the words won’t fit together so he can let that nice woman know.
“We need to redefine what it means to be helpful,” Teepa says. “Instead of doing something for people, we can offer choices. This increases their sense of independence and control.”
If someone is struggling to find a missing puzzle piece, put your hand under hers and guide her to two pieces, then together experiment to see which one will fit. By collaborating, you’re supporting and empowering the person living with dementia.
Go with the Flow
Perhaps you’ve experienced something like this: You’ve set up a wonderful tea time, complete with your mom’s favorite cucumber sandwiches, English breakfast tea, a clip from one of her favorite British comedies, and some photos from a long ago trip to the United Kingdom. Everything is ready to go, except your mom, who is gazing out the window at a starling and worrying a hole in her favorite red cardigan.
After you have a moment of disappointment, go with the flow and tailor the activity to her mood.
If she’s staring out the window, take her outside, if possible. Or find nature photos and sounds and experience those together. If she’s rocking back and forth in her chair, or repeating a folding motion, support her rhythmic movements with music or light tapping.
Make a List of Likes
Even for the most dedicated, being a care partner is not easy. Teepa Snow recommends making a list of the things you like about the person with dementia.
You might write, “I like the way he laughs.” That will direct you to watch for humorous moments. “I like her curiosity.” You can search out new projects to stimulate both of you. “I like the way he appreciates nature.” You’ll explore ways to be outside and experiment with ways to bring nature indoors.
When challenges arise in your interactions, this list reminds you to focus on the qualities you most appreciate.
Creative Sparks
Choose a quiet space relatively free of distractions. Select a time of day when you and your partner both have lively energy.
Choose a project you’d both enjoy and ready your supplies.
Issue the invitation and set the psychological stage for a failure-free activity.
Tap into your own spirit of playfulness. Take risks and try new things. Celebrate whatever happens, whether it’s an amazing watercolor drawing or yellow marks on plain white paper.
Allow the project to unfold at its own pace, offering support as necessary and encouragement along the way.
Know when to take a break. If you don’t have energy to be curious, if you’re exhausted, take a break and come back to the activity later. Otherwise you’ll feel frustrated.
If the project doesn’t go as planned, don’t worry. Go with the flow, praise the effort, and acknowledge the skill. Try again another day, choose another project, or try a variation of the activity.
Give notice when you’re winding down and offer an easy transition into whatever is next.
Thank the person for being part of this activity with you.
