Care Partnering

Musing Together: Looking at Art  Expands Skills, Increases Socialization, and Widens Horizons

The group pauses in front of a large contemporary sculpture, depicting a preacher standing before his congregation at a small country church.  They walk around the piece, noticing the pews, the organist, and the variety of parishioners, and chatting as they view. Then they settle into chairs and co-facilitator Esther Smith asks: “What is one word that comes to mind when you look at this piece of art.”

 

“Boring,’ says one woman.

“What makes it boring?” Esther asks.

“It brings me back to my childhood, when I was stuck in church for hours,” she answers. “I was so bored.”

A few others nod. Someone asks, “When was this made? Where is it from?” and the conversation about the art continues.

Every month at the High Museum in Atlanta, Georgia, Teaching Artist Esther Smith guides a group of care partners and people living with dementia on a 90-minute gallery exploration called Musings Together. 

“It’s a light-hearted, interactive experience,” Esther says. “We go at a slow pace, seeing only three to four works each time. We want people to have a comfortable, personalized experience with art.”

The open-ended conversation brings out people’s stories and ideas. Sitting in front of Giovanni Bellini’s Madona and Child, Esther asks, “What lines do you notice in this painting? Trace them in the air with your hand.”

After people trace their lines, she asks, “What line was most interesting to you?” That question might lead into a discussion of what makes this painting different. Then Esther might invite the group to pose like the picture. She might say, “How would that baby’s head feel in your hand?”

“These simple prompts launch us into deep conversations,” Esther says. She and her team are experimenting with expanding the sensory experience, including bringing out oranges when they’re gazing at a still life of fruit and letting each guest hold and examine the orange. Esther also invites people to occasionally sketch an aspect of a drawing that appeals to them, using a drawing pad on a clipboard. 

“ A number of our participants have never been regular museum-goers. Now they feel comfortable here and come more often,” Esther says. “Developing a new community of friends and an expanding interest in art enriches their lives.”    #

Want to look at art with someone who is living with dementia?

If you’re visiting a museum, focus on a gallery with 3-4 large and interesting pieces. Ask a docent for advice, if needed. If you’re at home, give yourself plenty to time to comfortably view a few works of art on-line or in books. 

  • Bring a folding chair, so you can sit.
  • Chose a time of day when your partner is energetic and the gallery is relatively quiet.
  • Have fun just noticing the aspects of the piece. You might invite comments on colors, textures, familiar figures, objects that seem odd to you, and other aspects. 
  • Ask open-ended questions, such as, “What does this piece make you think of?” “What do you like about this piece?” “How do you think that main guy feels?” 

When attention wanes, move onto something else, including a lovely coffee or tea break.   

Click to view informative and inspiring short videos on our YouTube channel

Deborah Shouse is the author of Connecting in the Land of Dementia: Creative Activities to Explore Together and Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.

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A Dream Came True at The Red Ballon Movies & Memories

“I wish I had a red balloon,” one of our guests said, after the inspiring ending of the short film, The Red Balloon. Moments later, the dream came true. Each guest was offered a buoyant scarlet balloon, the magical symbol of a meaningful film.

The Movies & Memories program now has a new time and date: the first Wednesday of each month from 10:30-12:00. 

        

 

 

As guests enter the lower level of the Plaza Library, they breathe in the enticing aroma of fresh popcorn. Soon, they are settled in comfortable chairs and munching on popcorn and cookies, while being serenaded.  They sing along with Richelle Basgall, who engages them with fiddle, guitar, kazoo, and more. They tap their feet and clap their hands, belting out favorite folk songs and old standards, such as  Ol’ Suzanna, Que Sera Sera,  and I’ve Been Working on the Railroad.

Then the lights lower and everyone watches intently as a young boy and his red balloon form a deep bond, and stick together, despite many obstacles.  People were still talking about the movie as they and their balloons trail down the hallway, heading towards home.

Get a taste of The Red Balloon movie event by clicking here. 

 

Many thanks to our wonderful volunteers, including Sharon, Julie, and Pam. And special thanks to Sharon and Elizabeth from Stonecrest for bringing delicious snacks for us.

Our next movie experience is on July 3rd. Please join us for Room on the Broom, and other short films, a celebration of diversity.  You’ll love the songs from Robert Gibby Brand, our featured musician. 

Click to view informative and inspiring short videos on our YouTube channel

Deborah Shouse is the author of Connecting in the Land of Dementia: Creative Activities to Explore Together and Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.

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Talking about Dementia with Teens

We were delighted to spend time with the bright and curious sixth and seventh graders in Mary Silwance’s class at KC Academy. They had read the young adult novel Hour of the Bees, which features a poignant relationship between a pre-teen girl and her grandfather who is living with dementia, and they wanted to learn more. During our short time together, talking about dementia with teens, we discussed:

  • How it might feel for people who are living with dementia
  • Stigma and stereotypes
  • Creativity and dementia
  • Becoming an advocate

Here are a few excerpts from our lively conversation: 

How many of you have ever misplaced something? How did you feel when you couldn’t find it?

How many of you have ever forgotten what you were going to say? 

Have any of you ever overslept, woken up in a panic, and not known what day it was?

Those kinds of issues happen to most of us, at least occasionally. 

But imagine how you would feel if they started happening all the time. You kept misplacing your cell phone, your homework, your library books. You couldn’t remember your address or your teacher’s name.  What if you raised your hand to answer a question at school and the words you were going to say just disappeared. Or they came out all jumbled up? What if it happened so often that you started to worry about talking and became more and more quiet?

These are a few of the things that people who are living with dementia have to cope with.

With most illnesses, people cluster around and want to help you. But some people with memory loss actually lose their friends. We know dementia is not contagious, so why would people shy away?

People are scared when their friends and family members start changing. They’re worried they won’t know what to say or how to communicate. They’re worried about making a mistake. But the only mistake is abandoning a person you care about.

Lots of people are working together to make life better for those who are living with dementia. And some are those are people who are living with dementia. They say, “Nothing about us without us,” which means, “Don’t make plans about our lives without consulting us.” 

How you can be an advocate

  • Watch your language. Don’t use the words victim or sufferer with Alzheimer’s or dementia. These are strong and courageous people dealing with a brain disease.  
  • Look for opportunities to spend time with people who are living with dementia.
  • Don’t worry if you don’t know what to say. Look at the person. If they’re in a wheelchair or chair, bend or kneel so you can have eye contact. 
  • Try to find a quiet place to talk and listen. Some people are overwhelmed by too much noise.
  • Remember to slow down because some people need extra time to answer questions.
  • Seek ways to connect through arts and imagination, including music, drawing, cooking, gardening, and flower arranging.

Click here to experience part of the conversation 

Click to view informative and inspiring short videos on our YouTube channel

Deborah Shouse is the author of Connecting in the Land of Dementia: Creative Activities to Explore Together and Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.

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Animal Magnetism: The Zoo Cafe Attracts Almost 100 People!

The April 16th KC Memory Cafe started out quietly. People came in, silent, perhaps feeling a little confused or weary. After they sat down at comfortable tables and were served comforting snacks, the conversations increased. People enjoyed their oranges, animal crackers, and drinks. And then the dynamic duo from the Kansas City Zoo brought out the first attraction and the crowd got really engaged in the black and bright blue tree frog from South America. They peered through the glass container at the amphibian, tapped the glass to get his attention, and asked questions. The animal magnetism was working. 

With the introduction of the African Pygmy Hedgehog, the guests became even more animated. The hedge hog was undeniably adorable and everyone wanted a good look. “Where is he from?” “What does he eat?” “Will he bite?” people asked. And “Can I have another look at him?” 

When the parrot emerged from its covered cage, everyone grinned and clapped. The bird wowed the crowd by saying, “Hello,” clear as could be. When one of the educators passed around brilliantly colored feathers the parrot had shed, people avidly admired them.

The energy was buzzing as people left, buoyed by learning about these new animals and excited by the outing. 

“I will be back,” one woman promised.

“This was so well done,” a staff member told us.

“I loved the parrot,” another woman said.

What we all loved most was seeing our guests blossom and talk and come to life by experiencing such an interactive and engaging program. Many thanks to the Kansas City Zoo for sharing these remarkable educators and animals with us. And many thanks to our guests for attending. We hope to see you all at a future cafes.

Click here and enjoy watching the animal magnetism

Want to experience some animal magnetism at home?

If you have a pet, share the responsibilities of caring for it. Taking care of an animal offers a sense of purpose and invites out our nurturing spirits.

If you don’t have your own pet, invite a well behaved pet to visit. Select an animal you all like, ideally one you can pet and hold, such as a dog, cat, or bunny.  

Consider adding a spill-proof aquarium, featuring brightly colored fish. Watching the fish glide by can be soothing. 

Look for other opportunities to hold or connect with animals.

Come join us for our next Cafe:

Deborah Shouse is the author of Connecting in the Land of Dementia: Creative Activities to Explore Together and Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.

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Let it Be: A Recipe for Counting Blessings

I want to share this story from Love in the Land of Dementia, a tribute to my mother and her beautiful capacity for wisdom. Here’s to embracing the divine flow of life.

Let It Be

For the first time, my mother cannot really help prepare our Seder meal. She wanders around the kitchen, pausing at the counter, the stove, the table as if to collect something lost.

“What was I doing?” she asks.

“Setting the table,” I say.

“How many people are coming?”

“Ten,” I say, spilling the spoonful of oil in my irritation. An old football cheer floats into my mind, first and 10“First and ten, do it again. Do it again.” And again. Mom has already asked me these questions several times in the last 10 minutes.

When Mom and Dad drove up two days ago, Dad’s face was tight and he went straight to the guestroom to take a nap.

“Sometimes I wish I were hard of hearing,” he told me, later that evening.

Mom’s speech is like an old record player with a needle that refuses to leave its groove. The simple anchors of life, the who, what, where, and when of things, often elude her.

“Did you remember the macaroons for dessert?” she asks, a fork in hand.

“Yes,” I say, again. I crack an egg and have to scoop shell out of the bowl.

I stir the matzo mixture and take a breath. I have trained myself to be brisk and efficient, but now, around my mother, I need to be slow and soft.

“How many people are coming?” she asks.

“Ten,” I say, impatience pinching my throat. “Let’s take a break and go for a walk.”

I wipe my hands and look for the house keys. They are not on their usual hook in the cabinet. They are not in my purse, or lolling on the kitchen table. I feel a brief flutter of shame over the impatience I felt just this morning, when Mom misplaced her glasses case for the second time. Then I feel a stab of fear: am I too losing my mind?

missing key“Have you seen my keys?” I ask my daughter, who comes breezing through, searching for chocolate to inspire her mid-term studying.

She stops, Hershey’s bar in hand. “They’re right in front of you, Mom,” she says, pointing to a huddled mass of metal on the counter corner. I pocket the keys and double check to make sure I have turned off the stove.

Outside, the redbuds are flowering; the dogwoods skirting newly green lawns. My mother and I walk past a closed-down lemonade stand, three broken lawn chairs,set out on the curb, and a blond, floppy-haired girl, skipping over a pink jump rope.

“It was hard when my mother died. My father just disappeared, took off walking,” Mom says. “He was a good man, though.”

I nod. I remember as much about my mother’s childhood as I do my own. The story of her mother’s death is one in a series of memories Mom has told me all my life.

We pass a woman strolling a sleeping baby and Mom smiles.

“Did you get the macaroons?”

“Yes, I did Mom.”

“Did I already ask you that?”

“Yes.”

“Your father gets mad at me sometimes,” she says. “He thinks I’m forgetting on purpose.”

“What’s it like to not remember?” I ask.

An eager black spaniel rushes up to us.

lost thought“I start a thought,” Mom says, bending to pat the dog, “and the end disappears. If I try too hard to catch it, that makes it worse. So I let go, and eventually I get the answer. Of course, by that time, something else is going on.” Mom smiles and shakes her head. Her hair is silvery and curly; her hands like fine dried flowers; her stride crisp and full.

All weekend, I have watched her happily listen to the conversations around her, passionately asking a question, then moments later, equally passionate, asking the same question. I have listened to her stories, which have the comforting familiarity of a well-worn quilt. These stories, which sprinkled my growing-up years, are now the major part of our conversations.

That evening, we celebrate Passover with a Seder service. As the service progresses, my father tells our guests about “Dayenu,” a Hebrew word that means, “Even that would have been enough.”

“It sounds like Die-aa-nu,” he says. “You repeat it after each of the sentences I’m going to read. It’s a way of expressing gratitude.”

My mother fiddles with the prayer book and asks for the third time, “Is it time for Elijah?”

“Not yet,” my father says, his voice tense. Then he calms and begins the Dayenu litany:

“If God had divided the sea without leading us onto dry land,”dayenu

“Dayenu,” we all repeat.

“If God had taken care of us in the desert for 40 years without feeding us manna,”

Dayenu.

“If God had fed us manna without…”

And so we follow the journey of our ancestors, promising we will be satisfied. With whatever we get.

As I repeat my gratitude and pledge my satisfaction with life as it is I think of my mother. I miss her remembering all the details of my life. I miss her knowing where the silverware drawer is. I miss telling her something I’m proud of and having her remember it. And yet, she is the living symbol of Dayenu, graciously accepting her failing mind and making the best of it.

“And now, it’s time to eat,” my father says.

My mother reaches over and pats my wrist. I see the patina of softness that burnishes her, the loving core that goes far beyond mundane daily detail. I see the woman who has loved me even during the years I wandered through a difficult wilderness.

As we sip our sweet wine and break off a piece of unleavened bread, I create my own litany:

If my mother gets pleasure out of life. . .

Dayenu

If she remembers who I am. . .

Dayenu

“This is a lovely Seder,” she says. “You did a beautiful job of putting all this together.”

I press her hand, look into her smiling face and say, “Dayenu.”

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Deborah Shouse is the author of Connecting in the Land of Dementia: Creative Activities to Explore Together and Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.

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Quality Moments in the Land of Dementia: Laughing and Creativity in Jamaica 

Our hosts started the program with a beautiful hymn of gratitude, a perfect way to acknowledge the spiritual aspects of connecting and laughing in the land of dementia. We met in the Salvation Army Church and Community Centre in historic downtown Falmouth, Jamaica, with a group of caregivers and community advocates. During our time together, we shared stories, information, laughter exercises, and creative ideas for taking care of ourselves and staying engaged.

For many, this was an introduction to dementia. For others, who were in the midst of caregiving, this was a time of learning and sharing. 

Ron and I talked about the importance of accepting each other as we are, no matter what we are going through. We discussed the power of having a purpose and how vital it is for all of us to have meaningful relationships and interesting experiences. . 

”When communicating with people who are living with dementia, don’t argue,” Shirley Duncan reminded everyone. “Don’t criticize. Be there to support and appreciate.” 

“When we are kind to ourselves, then we are better able to be kind to others,” one of our attendees said.

We discussed Dr. Cameron Camp’s concept of cognitive ramps, offering people the assistance they need to remain engaged in the activities they love. Here’s one example from our session: Lorna’s mother was a professional cook, completely at home in the kitchen. As her dementia progressed, she could no longer remember the family’s favorite recipes. But she could sit in the kitchen and enjoy the energy of cooking. And when Lorna’s daughter said, “We are going to make your famous stew. Does it have an onion in it?”  the mother smiled and nodded. Ingredient by ingredient, they consulted her, and she smiled and nodded at the mention of the right ingredients. Even though she wasn’t physically creating the meal, she was an integral part of the process.

We talked about the power of music, sharing ideas from Dan Cohen’s Music and Memory program and introduced people to the personal playlist.  We had an impromptu Conductorcise session, using Maestro David Dworkin’s aerobic and ground-breaking program, pretending we were conducting a symphony orchestra. We used laughter syllables to make it even more fun and soon everyone was standing up and conducting and laughing.

We shared a story from Karen Stobbe, reminding us all to affirm and appreciate and to use the improv technique, “Yes and…” to ignite and invite conversation. 

Throughout our discussion, we wove in laughter exercises.

We enjoyed an imaginary laughter swim. We batted around laughter balloons and cooked up a laughter stew that included fish, pumpkin, garlic, carrots, Irish potatoes and okra. 

At the end, we breathed in our gratitudes, closed our eyes and sent our feelings of love, connection, and laughter into the world, hopefully to help and inspire others. 

Click here for a small taste of this lively workshop:

A special thanks for the dementia advocates and community volunteers who brought everything together, including Dundeen Ferguson, Shirley Duncan,  Sandra Latibeaudiere, Elise Thomas, and Lorna Colley. And thanks to everyone who attended.

Deborah Shouse is the author of Connecting in the Land of Dementia: Creative Activities to Explore Together and Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.

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Pick the Best Care Community for Your Loved One

My hands were sweating as Mom, Dad, and I entered the memory care unit. We desperately wanted to pick the best care community for my mother. Pam, the head nurse, rushed towards us, arms outstretched. 

“So good to see you again,” she told my father and me. She turned to Mom. “And you must be Frances. Paul has told me so much about you. I hear you’re a nurse too.”

She took Mom’s arm and they walked together down the corridor, talking. We followed and Pam stopped at a small dining area, where coffee and cookies, chocolate chip, one of Mom’s favorites, awaited us. Dad and I looked at each other and smiled. Maybe, just maybe, this was going to be all right. 

We had already visited several homes and none of them seemed warm enough, caring enough, or quiet enough for Mom. What had won us over was Pam and her feeling for people who were living with memory loss, her determination to create community, her compassionate and easy way of communicating. 

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One of the most challenging experiences caregivers can face is finding the right community when your loved one needs care. Jytte Lokvig, PhD, regularly consults with families on this issue. Her new book, Moving & More, offers families concrete guidelines for finding the facility that meets their needs.

Click here to see our interview with Jytte Lokvig

When visiting a care community, Jytte suggests that we ignore the lobby and the landscaping. A beautiful lobby soothes the family’s soul but has little to do with the quality of care and engagement offered. Spend at least a couple of hours in memory care.

“Remember,” she says, “you are asking your loved one to live here. Stay on after your tour and blend into the scenery, so you can really get a sense of how staff and residents interact.”

Here’s what you want to learn:

  • Does the facility practice “Person centered-care?
  • Do residents participate in menu and activity choices?
  • What is the staff/resident ratio?
  • What are the staff retention rates?
  • Do all staff receive mandatory first aid and dementia training?
  • Are the family, nurse, personal care and activity staff involved in creating the resident’s care plans?
  • Does the activities calendar offer a blend of entertainment and interaction? 
  • Are there both individual, small group, and large group activities?
  • Does the staff acknowledge each resident, even with a simple greeting or compliment?

After you have a sense of the community, take your loved one to visit. Have a meal with the residents. Stay for an activity program. 

“Several visits like this helps both of you feel more comfortable when the move comes,” Jytte says.

For more tips and information, visit Jytte’s site at http://www.alzheimersatoz.com and consider her book:  Moving and More.

Deborah Shouse is the author of Connecting in the Land of Dementia: Creative Activities to Explore Together and Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.

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Art Invites Conversation

Teri Miller, with the Alzheimer’s Association Houston & Southeast Texas Chapter, has witnessed the power of how art invites conversation. As the Early Stage Program Manager, Teri collaborates with a variety of Houston’s arts and civic organizations. 

“Going to cultural activities offers people a sense of normalcy and gives them a date to put on their calendars,” Teri says.  “When they go with friends or care partners, they have an experience to discuss. Even people who say, ‘Oh, I don’t care for museums,’ usually have a great time.”

Sam is an example of someone who was surprised to enjoy the art gallery.

He attended one of Teri’s early stage support groups. His wife, who cared for him at home, went to the care partner’s group. Teri formed a partnership with the Houston Museum of Fine Arts and invited her early stage group to experience a tour. When he heard the invitation, Sam rolled his eyes and said, “I’ve never been to a museum and I’m not about to start now.” 

But the next week, Sam signed up for the tour. 

“What made you change your mind?” Teri asked.

“My wife really wanted to go. She does so much for me, I figured I’d do something for her.”

Teri expected Sam to sit back silently, arms folded over his chest, as the docent asked, “What does this painting make you think of?  Has anyone ever been in a similar setting?”  But to Teri’s surprise, Sam had opinions on each of the three pieces they discussed. 

Sam told Teri, “At first, I didn’t want to go because I was worried I wouldn’t have anything meaningful to contribute.  But I guess you don’t have to know anything about art to enjoy the museum.”

He and his wife talked about the experience all the way home.  Discussing the paintings opened up chances to reminisce and connect. Plus the experience gave them something interesting to share with their grown children and visiting neighbors. 

Like many art partnerships around the country, Teri was inspired by MOMA’s Meet Me art program for people living with dementia. The Houston museum benefitted from MOMA coming to train their docents. The program offers comprehensive guidelines for visiting a museum or viewing art at home.  

Creative Sparks:

Many art galleries and museums offer special tours and events for people living with dementia.  If you’re lucky enough to have such a tour available, take advantage of it. 

To design your own museum tour:

  • Think of a museum your partner likes. If feasible, buy postcards of some of their art or visit their on-line gallery together and ask your partner which pieces he prefers. That way, you can tailor the visit to his taste. 
  • Choose one or two rooms that feature his preferred art. Make sure one room has a place to sit.
  • Use the paintings and sculptures as a catalyst for conversation. Ask open-ended questions, discussing the colors, people, and objects you both notice. 
  • If the museum has a restaurant or tearoom, treat yourselves to something delicious. 
  • Enjoy the sense of connection that comes from discussing art; there are no right or wrong answers, just interesting observations.
  • To fashion a viewing experience at home: 
  • Select art books from the library or use your own personal collection. 
  • Choose works that portray emotion, tell a story or align with your partner’s background or interests.
  • Ask open-ended questions that invite conversation, such as, “What does this make you think of?” and “What do you notice in this picture?” Have fun imagining what the people in the painting are thinking. Imagine their professions and whether they’re happy. 

This is an excerpt from Connecting in the Land of Dementia: Creative Activities to Explore Together. Deborah also wrote Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.

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