Читать книгу Connecting in the Land of Dementia - Deborah Shouse - Страница 13
ОглавлениеStrengthen Communications through Creativity
Explore New Ways of Connecting
Use Playfulness to Jump-Start Conversations
Discover the Creativity at the End of the Rainbow
Explore New Ways of Connecting
“Where words no longer brought us together, something richer did . . . a universal expression, a deeper knowing . . . a place where the resilient human spirit, against all odds, rises to meet itself and seek another.” —Laura Beck
Laura Beck knows firsthand the wonders of creativity and dementia. Laura, who is the Learning and Development Guide at The Eden Alternative, began her informal studies on dementia when she was in her early thirties. Her father was living in a Texas nursing home that was practicing The Eden Alternative. This philosophy, developed by Jude and Bill Thomas, MD, helps families and care professionals create quality of life through compassionate care partnerships that put the person first.
Laura’s dad had been a competitive ballroom dancer, and he resonated with music. Though he’d lost his speech, he could express himself verbally through jazz scat (rhythmic syllables, such as “be-dop-a-do-bop.”)
One evening, Laura went to visit him. She heard him singing and followed his voice to his room. He was lying in bed, his thick white hair wildly tousled, his eyes wide, and his voice loud, primal, and totally alive. To Laura, he looked like a shaman or warrior. His intense, primitive sounds startled her and for a moment, she felt so overwhelmed, she stepped out of the room.
That could be me, she thought, steadying herself against the doorframe and taking a deep breath. Once she acknowledged her feelings, she felt stronger. She walked back into the room and sat beside her father, took his hand, and stared into his hazel eyes. Each time he chanted something, she offered affirmations, saying, “Yes, I hear you.” Then she noticed he was having more fun than she was. She began responding to his chants, repeating them in a call and response. For twenty minutes, her dad called out with fiery syllables, and his daughter echoed him.
“Those were the most connected moments I ever had with him,” Laura says. “For me, that was a template for being creative in a relationship. My father brought me into the present and invited me to play.”
That experience helped Laura understand in a new way what it meant to be a care partner.
“Every moment, we’re both recipient and giver,” she says.
“Until we address our own issues with dementia and aging, we cannot step into an open and expressive care partnership.”
“During the dementia journey, creativity makes space for spontaneity and possibility,” she says. “Anytime we can listen to the wisdom of people living with dementia and give them voice and audience, we can learn something profound and powerful.”
She saw her father’s innate wisdom and realized the importance of noticing and dealing with her own fears.
“Until we address our own issues with dementia and aging, we cannot step into an open and expressive care partnership,” Laura says.
In the pages ahead, you’ll find ways to add expressiveness, comfort, playfulness, and depth into your everyday conversations.
“What if we treated people who were living with dementia like we treated children who were living with Down syndrome? What if we said Alzheimer’s syndrome instead of Alzheimer’s disease?” —Cameron Camp, PhD
Sandra’s hands are sweating as she walks into the building. She knows her father needs memory care, yet she feels sad, guilty, and worried about him living in a facility. As she waits to meet with the marketing person, a nicely dressed older gentleman approaches and introduces himself. “I’ll be taking you on a tour of the community,” Franklin says.
Sandra almost rolls her eyes at the word “community.” Just jargon to help the families feel more at ease, she figures. She follows him into the memory care unit, expecting to be assaulted by offensive smells and stagnating elders. Instead, she is greeted by vibrant art, fresh flowers, and a lively mixture of people clustered around a piano, singing along. Franklin explains the various programs, showing her the cooking counter in the spacious dining area, where community members and kitchen staff are chopping red and yellow peppers for a Mexican lunch. After a tour of the library, he shows her a typical resident bedroom, then invites her into another bedroom filled with a variety of plants.
“This is my room,” Franklin says. “I’m a gardener, as you can see.”
Sandra tries to mask her surprise. She had no idea that Franklin was living with dementia. And she had no idea that her father could keep on gardening once he moved into a home.
“We are constantly asking ourselves, ‘What would people living with dementia want to do if they didn’t have a memory impairment?’ and ‘How can we help them do that?’”
Cameron Camp, PhD, has worked with Franklin’s care home, using Montessori and other person-centered principles. Cameron is the author of Montessori-Based Activities for Persons with Dementia, Volumes 1 and 2. He’s an international leader in using Montessori principles to help people living with dementia keep engaged and connected. Maria Montessori originally designed her program to help disadvantaged children who struggled with learning and other disabilities. One of her precepts is, “Help me to help myself.” As Cameron trains care partners all over the world, he emphasizes the values of respect, dignity, and equality.
Cameron says, “We are constantly asking ourselves, ‘What would people living with dementia want to do if they didn’t have a memory impairment?’ and ‘How can we help them do that?’”
Leading with Reading
That kind of thinking led Cameron and his team at the Center for Applied Research in Dementia to develop the Reading Roundtable®. Franklin facilitates a group discussion, attended by people with all levels of dementia, including the later stages. Topics range from the invention of basketball, to the life of Leonardo da Vinci, to the history of the chocolate chip cookie. Each participant receives an eight-inch by ten-inch booklet with a colorful cover and large, bold print on each page. Franklin begins by reading the first page, which describes the wonderful aroma of fresh-baked chocolate chip cookies.
“According to our research, when persons with early to moderate dementia lead reading and discussion groups, attendees are happier and more constructively engaged than they are when staff leads the group.”
Franklin asks the group, “Who baked cookies in your growing up household?”
One woman says, “My mother.”
Another says, “I did.”
Then he goes around the table, asking the next person to read a page, assisting anyone who needs help. Along the way, he continues to ask questions, and they get into interesting conversations.
“According to our research, when persons with early to moderate dementia lead reading and discussion groups, attendees are happier and more constructively engaged than they are when staff leads the group,” Cameron says.
Treat People as We Wish to be Treated
“We simply try to treat people living with dementia as we wish to be treated,” he says. “We follow Montessori’s guidelines, trying to help people regain control of their lives.”
Instead of focusing on, ‘Look what they can’t do,’ we celebrate, ‘Look what they can do with assistance.’
Montessori said, “Everything you do for me, you take away from me.” To keep this from happening, Cameron and his team work with families and facilities to create an environment where everyone enjoys responsibilities, purpose, and meaningful social roles. Examples include empowering people living in care settings (or at home) to greet new people, memorializing those who pass away, visiting friends who are in the hospital, and deciding what kinds of outings they want to experience.
“We are attempting to revolutionize the way we treat and think about dementia.”
Cameron encourages intergenerational work. He creates workstations, where people living with dementia can mentor young children, showing them how to use work tools, bake a cake, hang up clothes, make model boats, knit, and more.
He supports families in creating cognitive ramps. “Similar to physical ramps for people who are in wheelchairs, cognitive ramps help people overcome challenges so they more fully participate. Instead of focusing on, ‘Look what they can’t do,’ we celebrate, ‘Look what they can do with assistance.’”
What they can do is legion. Take the open mic comedy club created and staffed by people living with dementia. They send invitations to family and friends. They select and print the jokes, and they find a singer to entertain between acts. The singer types the lyrics to all the songs he knows and prints them. When guests arrive, two gentlemen who are wearing tuxedos guide them to their tables. A waitress asks, “Tea, lemonade, red wine, or white wine?”
“Tea,” a guest might answer.
The waitress places a brown square beside him. “Please don’t move that or I won’t know what kind of drink to pour,” she explains. She knows the brown square equals ice tea; the red square equals red wine. This Montessori matching exercise allows her to fill the social role of the server and outshine the memory issues. To set the tables, she consults a template—a drawing on a placemat that outlines fork, spoon, knife, glass, napkin, and plate.
“We are attempting to revolutionize the way we treat and think about dementia,” Cameron says. “People want to live well with dementia, just as they want to live well with diabetes and cancer.”
Creative Sparks
Notice your partner’s interests and abilities.
Build on strengths by developing “cognitive ramps,” which can help your partner stay active and engaged and living his best life.
Incorporate Montessori principles into your activities. These include using materials you can hold and manipulate, offering choices, and demonstrating the activity first.
Use matching principles and templates to expand and enhance activities.
“Let the things you love be your escape.” —Anonymous
“My mom loves gardening, but with her memory loss she just can’t work outside anymore.”
During her career as an executive in the senior living industry, Mara Botonis often heard this kind of lament from family members. When her own beloved grandfather was diagnosed with dementia, she was determined that he would continue to enjoy his lifelong passions, which included golf, playing cards, and fishing.
“I wanted Grandfather to have the best possible experience every day, so I learned to put laughing ahead of laundry and dishes.”
Mara, author of When Caring Takes Courage: A Compassionate, Interactive Guide for Alzheimer’s and Dementia Caregivers, understood the care partner’s tendency to let creative time slide in favor of vital practical matters, such as assisting with dressing, feeding, and bathing.
“I wanted Grandfather to have the best possible experience every day, so I learned to put laughing ahead of laundry and dishes,” she says. “So what if we use throw-away paper plates?”
Here are some ways Mara successfully kept her grandfather involved in his passions. For a time, he walked the golf course and played with empathetic friends. When he could no longer play, he liked being driven around the course, enjoying the scent of freshly mown grass, the vistas of rolling green lawns, and the thwack of a well-hit ball. At home, the family set up an indoor putting green and watched golf tournaments on television with him.
Family gin rummy sessions were another of her grandfather’s favorites. When he could no longer track the game, Mara asked herself, “What is important about these family competitions?” She realized the game was a catalyst for reminiscing, laughing, and eating their ritual potato chips and dip. Even when Grandfather couldn’t play, he still liked sorting the cards by suits and sitting around the card table with his family.
Mara helped Grandfather stay involved in fishing by taking him out on a boat when he could no longer navigate on his own. On other days, they’d walk by the shore, stopping to chat with fishermen, smelling the salty breeze, and watching the sea birds. Back home, Mara encouraged him to organize a tackle box, by sorting and arranging the hook-less lures.
To adapt your own projects, ask yourself: What is most important about the activity? For example, for gardeners, is it the feel of their hands in the soil? Is it producing flowers or harvesting vegetables? Having something to take care of? For those who like quilting, is it the finished product or making the squares? Is it the companionship with other quilters? Or the feel of the fabric? With that information, you can break down the components of the activities and see which are doable and pleasing.
Creative Sparks
Discuss which hobbies and rituals are most important to your partner.
List the components of the experience and learn which parts your partner most enjoys.
Adapt the experience as needed to your partner’s changing interests.
Use Playfulness to Jump-Start Conversations
“Love, the essence of love, manifests itself through playfulness.”—Réné Gaudette
For days, Albert sat in front of the television, stony-faced, unmoving. His wife Grace tried to pry him loose by asking, “Want to go for a walk?” But Albert sat silent, eventually mumbling, “No.” Then Grace talked to Erin Bonitto, a Minnesota-based dementia communication coach. Afterward, instead of hovering meekly in front of the television waiting for her husband to answer her, Grace turned off the program, sat beside Albert, and glanced all around the room.
“Albert,” she said, “You’re the best looking man in the room.”
Albert chuckled.
“We should stretch our legs,” Grace said. “Come with me, I have something to show you.”
Albert stood and went with Grace.
“It’s not so much what you say,” Erin says. “You’re trying to create a spark and connection between you.” As founder and lead coach in Gemini Consulting, Life Enrichment Systems for Dementia, Erin has years of experience working with care partners in home and healthcare settings.
Jazz Up Visits
Nan didn’t know what to say when she visited her mom in the memory care community. If she said, “Hi Mom, how are you?” she’d either hear, “Fine,” or she’d be bombarded by her mom’s list of complaints.
Erin advised Nan to stride in with a big smile and open body language. Instead of a routine question, she might say, “Wow Mom, you look like a million dollars.” Or, “Mom, you look so good I think we should go out for a stroll.”
“You’re trying to restore creativity and playfulness to your relationship.”
Another daughter took Erin’s suggestion to a higher level and said to her widowed mother, “Mom, you’re so beautiful today, I think we should go find some men.”
“I think we should too,” her mom answered.
Erin explains, “You’re trying to restore creativity and playfulness to your relationship.”
Playfulness worked its magic with another family. Whenever Jack wandered into his kitchen with a look of confusion on his face, his wife learned to say something cheerful, such as, “At last. The King has arrived.” Then she laughed, and Jack chuckled as well.
“The laughter releases endorphins,” Erin says. “Once those endorphins are moving, conversation flows more easily. When you use these techniques, you are both on the exact same plane.”
Have Fun and Break Ice
Erin is working with the staff of a memory care home in Minnesota to help their residents more readily interact with each other.
“These residents have a capacity for friendship and joking, but they can’t initiate a conversation,” Erin explains. “We’re coaching the staff on ways to connect by using irreverent ice breakers.”
For example, an aide guides Joe to his seat at the dining table. “Harry,” the aide says to another man at the same table, “Keep an eye on Joe. He’s a real troublemaker.” She smiles and both Harry and Joe laugh. They are now connected and talking.
Creative Sparks
Think of phrases that will surprise and please your partner, such as: For a spouse:“Ah . . . it’s the lady I’ve been waiting for!”“You know, I haven’t had a single hug today.”“Ah, my partner in crime!” For a parent or grandparent:“Well, there’s my distinguished dad!”“Mom, it’s me, your best-looking daughter!”
When your conversation becomes rote, add in phrases and gestures that will evoke a smile or laugh.
Help your partner communicate with others by offering playful introductions.
“To succeed, planning alone is insufficient. One must improvise as well.” —Isaac Asimov
Karen’s mom gazes out the window and notices squirrels jumping from one tree to the next. She has never seen squirrels leap so high, and she assumes they are a different animal.
“Look at those monkeys,” her mom says.
“Yes and they’re jumping all around,” Karen answers, inviting her mom’s creativity instead of correcting her. “What shall we do with them?”
“Catch one,” her mom answers. “Look at those monkeys.”
“Yes and they’re flying from branch to branch,” Karen says.
“And they’re wishing for a banana,” her mom says, smiling.
Karen smiles. They are two women, monkeying around, engaging in a stimulating exchange.
Yes, Yes, and Again Yes
Because of her background in improvisational theater, Karen Stobbe of North Carolina, often relies on “Yes, and . . .” a key component of any skit.
“With both improv and caregiving, you learn the basics; then you go with the flow.”
“When you say no, you stop the flow of language,” Karen says. “‘Yes, and . . .’ invites imagination and creativity.”
Karen got the idea for using improv techniques with her mom when she was suffering through a boring caregivers’ workshop. Karen thought, “If I see one more PowerPoint slide showing one more grim brain picture, I’ll explode. If only they’d use some improvisation games, they could illustrate the information more clearly.”
She had worked as an actor, writer, and improv artist. To keep her sanity during the endless workshop, she began jotting down improvisational ideas that would help caregivers.
“With both improv and caregiving, you learn the basics; then you go with the flow,” Karen says. “You can rehearse, but you’re only practicing techniques. The performance remains a surprise.”
Karen fleshed out her ideas, received a grant, and created a training program that she offers free on her website. The program has also helped Karen enliven her communications with her mom.
The Flow Is Fun
When communicating with a person living with dementia, Karen suggests, “Go with the flow. Don’t contradict, argue, or question. As family members, we often hang onto the past and desperately want our loved ones to be ‘normal.’ They are being normal in their world, and we need to step into that arena.”
In improv, as in caregiving, you don’t put the other person on the spot. In a skit, if you ask a pointed question, you give unwanted power to the other person. In a care situation, you’re asking a question of someone who may struggle with the answer and feel frustrated.
So when Karen takes her mom to their favorite ice cream shop, she doesn’t ask, “Do you know where are we right now?” Instead, Karen anchors her mom by saying, “This is a really beautiful ice cream shop. Look at all the flavors and think about what you’d like.”
If her mom seems overwhelmed by the rainbow of choices, Karen says, “I’m going to get a scoop of chocolate. You usually like Rocky Road. Is that what you’d like today or do you want to try French Vanilla?”
Back home, Karen understands her mom’s worry over making mistakes. So she doesn’t say, “Mom, want to sit down and I’ll bring you a snack.” Karen knows her mom will stand frozen in front of the table, not knowing which place is hers. Instead, Karen walks her mom to the chair and pulls it out for her.
“Here’s your chair, Mom,” Karen says. “Would you like to sit here or on the couch?”
Allow for Silence
In both improv and caregiving, sometimes you don’t know what to do or how to respond. When you feel stuck, you can simply say, “I don’t know what to say right now. Let me think.” Several minutes of quiet can clear your mind and inspire insights.
Creative Sparks
Use improv techniques for more open and creative communication.
Encourage conversation by saying, “Yes and . . . .”
Try not to correct your partner.
Go with the flow. If your mom is confused and believes you are an old friend, allow her the comfort of communicating with that person.
Welcome silence. When you don’t know what to do, a few moments of silence or deep breathing can restore you.
“We must work intuitively and creatively—remembering the dementia journey goes beyond alienation into wonderment.” —Karrie Marshall
Once her husband, Colin, is dressed, Angela hands him a postcard that reads, “You are invited to try a brand new breakfast cereal this morning.” The previous morning, Colin’s invitation promised, “You are invited to watch a new television program with me today. Popcorn included.”
“An invitation creates an occasion and adds a bright focus to the day,” says Karrie Marshall, author of Puppetry in Dementia Care.
“You gain something new to talk about and something different to experience together.”
Karrie, a former nurse, lives in Inverness, Scotland, and specializes in creative projects for those living with dementia. Invitation ideas include going on a walk to a coffee shop, making cookies together, reading a favorite magazine, listening to a new song, and visiting a friend.
Some family members create a fancy invitation, while others simply write on an index card or piece of notepaper. If you enjoy dramatic flourish and ritual, you can deliver the invites on a silver tray.
“An invitation creates an occasion and adds a bright focus to the day.”
Conversation Cards
Lately Colin had seemed apathetic and indifferent. Angela was tired and discouraged and having a hard time staying cheerful. Then she remembered the list she’d made at a recent care partners creativity workshop, a list of her own favorite memories, sayings, and simple pleasures.
“When the care partner is worn out, their partner senses that,” Karrie Marshall says. “Creating cards with quotes, ideas, and fond memories can lift your spirits.”
You can use these cards when you need a personal boost or a topic of conversation. Some care partners paste an inspiring quote, a shared memory, a line from a favorite song, or a family joke on each card. They then can share the card with the person living with dementia, using it as a conversation trigger.
After breakfast, Angela might hand Colin a card that reads, “Our weekend at the lake.”
Angela tells him, “I’ve been thinking about the time we went to the lake, and you decided to swim across to the other side.”
Colin nods in a noncommittal way; she knows he doesn’t remember.
“It was before we were married,” she says. “We took a picnic, and you swam across the lake and back while I watched you.”
“I was a good swimmer?”
“You were and you are. You swam all during high school and kept it up all your life. In fact, we’re going to the pool tomorrow.”
Angela smiles as she talks to Colin about his aquatic prowess. Even though he’s not saying much, he’s listening. And she’s enjoying talking about their shared adventures.
Creative Sparks
Create an invitation, asking your partner to join you for a new experience.
Write some favorite memories, quotes, or simple pleasures on index cards and use these cards to boost conversation with your partner.
Enjoy talking about your memories with your partner listening. Avoid asking, “Do you remember?” and simply share your own reminiscences.
Discover the Creativity at the End of the Rainbow
“The greater your storm, the brighter your rainbow.” —Anonymous
Would you try to force a person with a broken leg to walk up three flights of stairs? No, you would find an elevator.
“We need to do the same for people living with dementia, make accommodations for their physical, mental, and psychosocial changes,” says Lori La Bey, founder of Alzheimer’s Speaks, which hosts a resource website, a blog, and an international radio show. “People living with memory loss are the true experts and can show us meaningful ways to support them. They have wonderful advice that goes beyond research and right to the heart of the matter.”
Lori’s mom lived with dementia for thirty years. Initially Lori struggled with fear of failure. As her mom’s care partner, Lori was paralyzed by the terror of not doing things right. Her anxiety was fueled by limited resources and by the lack of public conversation about the disease. Looking for answers, Lori began to explore options around the world.
“People living with memory loss are the true experts and can show us meaningful ways to support them.”
Understand the Pattern
Over time, Lori’s mother’s humor and resilience began to inspire her. Lori’s dad was an enthusiastic golfer, and her mom hesitantly agreed to go with Lori to try the sport. During the outing, her mom was standing near a sand trap, club in hand. Suddenly, she fell in and when Lori rushed over to help her, she found her mom swimming the breaststroke in the sand.
“She was lying face down, moving her arms, so proud, calm, and comfortable,” Lori says. “Her mind had saved her and put her in a safe place.” Her mom’s early lifeguard training had been triggered by the fall, and she was swimming to safety.
Then her mom broke out laughing, realizing she wasn’t in her girlhood lake but in a sea of sand. Lori helped her up and all was well.
Once Lori moved beyond her fear and let in playfulness, she had many periods of deep connection with her mother.
“That was a turning point for me,” Lori says. “I began to understand that she did certain things because her brain was following a pattern. I started learning not to judge and to look for the connections.”
Once Lori moved beyond her fear and let in playfulness, she had many periods of deep connection with her mother. These moments were so powerful that Lori became a tireless advocate for those living with dementia and their care partners.
Talk about Dreams and Preferences
As a care partner, Lori knows it’s easy to get consumed with the medical condition when someone is diagnosed with memory impairment.
“We miss out when we forget to talk to our partners about their spiritual, physical, and psychological needs,” she says.
Here are some discussions Lori found to be meaningful with her own mother:
What’s on your bucket list?
What are some of your favorite songs, singers, bands, foods, hobbies, and activities?
Let’s go through old pictures, and you can show me your favorites.
Will you help me gather your personal history, including stories about growing up with your family, jobs you held, friends you had, sports you played, vacations you went on? This will become extremely helpful later as the disease progresses, and it will be fun to do together now.
Shall we talk about some of our favorite moments together?
What is important to you in your daily routine? Reading the newspaper, sipping a morning cup of coffee, taking an afternoon walk, doing a crossword puzzle?
Would you be willing to share your experience as it progresses via writing, video, or photos, or just talking to me about it? Your insights would really help me and the rest of the family understand what you are going through.
“Dementia is a vibrant disease, encompassing the colors of the rainbow,” Lori says. “If we regard it in strict black and white, we only see right or wrong. We need to let in the color and light.”
Creative Sparks
Let go of any fears that you “won’t get it right.” The only misstep is if you don’t try to help a person living with dementia. This is a game of trial and error, not wins and losses.
Talk about dreams, goals, memories, and preferences together.
Support your partner by adapting to the changes he is experiencing. Ask for his advice when possible.
