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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Come Have a Ball with Us!

Explore the fun of learning and playing Bocce Ball at our next Memory Cafe!

Help your neighborhood become more dementia friendly by attending our May 23rd Lunch and Learn. Please RSVP to heatherharrison@kclibrary.org

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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Creating a Dementia Friendly Kansas City

Luck. Kismet. The stars aligning. Those are all valid descriptions of our April 5th event, Creating a Dementia Kansas City.

First, we were lucky to have two great speakers: Emily Kearns, PhD, formerly of Dementia Friendly Massachusetts and Michelle Niedens, from the University of Kansas Alzheimer’s Disease Center.

Then, a lovely splash of kismet  when Emily and April Roy, Director of the Plaza Library, were invited to join Gina Kaufmann on KCUR’s Central Standard.

Thanks to Central Standard and lots of grass roots marketing, almost 100 people attended from many different sectors. Our attendees included representatives from The Alzheimer’s Association, The Nelson-Atkins Museum of Art, The Kansas City Symphony, The Renaissance Festival, KC Actors Theatre, The Naka-Kon Anime Convention, the Mayor’s office of Culture and Creative Services, as well as the medical and healthcare communities, senior services providers, the library community, first responders, faith communities, social work consortiums, people who are living with dementia and their friends and care partners, community volunteers, and more.

Our vision was beautifully articulated by our two speakers: “We envision Kansas City as a community where every citizen feels welcomed, valued, and engaged.”

We’ve only just begun and we welcome your support. 

 

 

Click on this link to enjoy a brief sampling of our Dementia Friendly Kansas City official launch

Click here to preview some inspiring action steps

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

Please consider joining us for our follow through Lunch and Learns.

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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Coming Together to Ignite Hope: Working with Dr. Chawla in New Delhi, India

Our Uber driver in New Delhi was a turbaned Sikh with a long gray beard. A sign hanging from the rear view mirror proclaimed, “This car respects women.” He deftly drove us through the city, navigating the melee wherein four lanes of cars compete in a two-lane space. Inside the NGO, Hope Ek A.S.H.A., the receptionist led us into Dr. Chawla’s office. Dr. Chawla has a rich voice and a magnetic presence. She is the catalyst for this center for caregivers, creating the service because of her own experience with her mother and Alzheimer’s.  We were coming together to ignite hope. 

“We know how hard it is for the caregivers,” she says. She and her team help caregivers throughout New Delhi and indeed, throughout the world, educating them, visiting with them and their loved ones who are living with dementia, facilitating support groups, sharing stories and ideas, offering respite and financial support as possible. 

For this event, she has gathered a group of doctors, caregivers, support staff, and more. First, some of her team show us activities they do with clients who are living with dementia. These include chanting, deep breathing, gentle stretching, tapping (EFT- Emotional Freedom Techniques), and a lovely heart opening exercise that affirms “We are healthy, we are happy.” They show us painting and games that strengthen memory.

Join us for these interesting exercises:

Then a caregiver from Mumbai Skypes in. Her voice is sad and her face is drawn and pale. She wipes at her eyes as she discusses her issues with her father. Instantly, one of our caregivers steps forward to offer advice. I share ideas with her as well. Then Dr. Sahi, leader of the New Delhi Laughter Academy, guides us in laughter exercises. Within minutes, we are all laughing, even our friend from Mumbai. When the session ends, the worn and weary caregiver has been transformed into an energetic and renewed woman, one who believes there is hope. 

       That’s is one of the reasons we all came together: our mutual hope and our belief that everyone needs support and a sense of community and purpose.

Experience our New Delhi caregiver’s event by watching this video:

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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Rock Around the Library: Celebrating a Year of KC Memory Cafes

No one can sit still. Not when Little Richard, The Archies, or Dion are singing. It’s a Rock Around the Library: Celebrating a Year of the KC Memory Cafes. We are one-year-old this March and we’re celebrating with Musical Bingo by Carrieoke Productions. We’ve enjoyed ice cream and cake and we’re ready to roll, rock and roll, that is.

At the first note, one of our guest says, “Sugar, Sugar.” She’s right and a small group of us sings the literally saccharine lyrics, “Sugar, ahh honey, honey, you are my candy girl…”

Within moments, all the care partners are dancing. We’re all helping each other find the songs on our Bingo sheets. We’re singing along when we know the lyrics and humming along when we don’t.  We’re laughing. 

When Carrie plays the Beach Boys’ tune, I Get Around, one guest says, “I wish I could get around.” Another chimes in, “Me too!”

For an hour, we Twist and Shout, warble Do You Want to Dance?, warn our neighbors not to “step on my Blue Suede Shoes,” and shake our heads over Run Around Sue. Those who win at musical bingo, and there are many of them, get to select a prize.

“It’s wonderful to see people blooming,” one care professional says.

And it’s equally wonderful to see the caregivers laughing, joking, dancing, encouraging, sharing, and helping us create This Magic Moment.                                                    

 Click here to join the party:  

Don’t miss our Magic Moment in April. The Kansas City Zoo is bringing some exotic and personable animals on April 16th. 

Please join us at 10:30 on the lower level of the Plaza Library. Come early. Please share this information with anyone who might benefit.

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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Creating a Dementia Friendly Kansas City: Join us and make a difference.

 

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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