Activities

Connected in the Land of Dementia: Easy Ideas and Free Events

The more research we read, the more people who are living with dementia we listen to, the more care partners we consult, the more we understand the power of keeping engaged, inspired, and connected in the land of dementia.
Along with Jennifer Walker, RN, BSN, Clinical Community Liaison from Kansas City Hospice, we’ll be sharing ideas for staying connected on Wednesday June 27, at 6:00 at Santa Marta.
If you’re interested, please join us for this free event.  We’re also including information on two free dementia-friendly gatherings happening in June in KC.
 
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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KC Memory Cafe: Great Weather Information Inspires Great Conversations

Karli Ritter is a self-described “weather nerd.” When this Fox 4 meteorologist finished her lively talk at April’s KC Memory Cafe, we all had a bit of that “weather nerd” fever in us. We listened intently as Karli described her early morning routine, up at 4:30 a.m., studying the weather maps and data so she could formulate a forecast. She detailed the complexities of being an integral part of a five-hour show: she actually appears on TV 90 times during the Kansas City Fox morning show! Her talk reminded us that great weather information inspires great conversations.

Karli has a love for storms and we were delighted with our “tornado” experience, courtesy of the Kansas City Public Library staff. We used a special coupler to link one empty liter bottle with one half full with water. Then we shook and turned it upside down and voila! a little tunnel tornado formed in the water! Each person was fascinated by this experiment. That led us to a conversation about personal weather experiences. Our attendees had gone through hurricanes, earthquakes, dust storms, tornadoes, nor’easter’s and much more.

Our discussion continued on the way out, with guests describing the varied weather in the Kansas Flint Hills, rainbows they’d seen, family members who loved forecasting the weather, and long hot summers and long cold winters.  

To watch our weather wonders, click here.

Bringing the weather home.

To start a weather conversation in your own family or community, use music as a catalyst. Play songs such as: You Are My Sunshine, Stormy Weather, Somewhere Over the Rainbow, Raindrops Keep Falling on My Head, The Sunny Side of the Street, Let It Snow. After each song, ask an open-ended question. “What do you like about snow?” Or,” What seasons do you like most?” Or “Have you ever been in a really big storm?” Or,”What is your favorite kind of weather?”

You can also play iconic movie clips that feature weather, such as the joyous tap dancing scene in Singing in the Rain, or the tornado scene in The Wizard of Oz. 

Dramatic weather photos and pictures can also trigger memories and comments. 

Thanks to our Cafe Team and thanks for those who visited.

Our next adventure: May 15, 10:30 to 12:00, Plaza Library

Music to Our Ears: The Kansas City Symphony Brings Us Note-worthy Instruments

You’ve heard them as part of the orchestra. Now you’ll be meeting selected instruments first-hand, as the Symphony’s Margaret Halloin joins us for this delightful interactive session. Enjoy refreshments and interesting conversations as we learn more about the sounds of music.

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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The Power of Play in the Dementia Journey

Josh Rice, a theatre maker and teaching artist,  discovered the power of play in the dementia journey when he was still in graduate school.  As part of a school project, he partnered with a senior living community on a therapeutic puppetry and improv-based program for people living with dementia.

Together, Josh and the seniors designed and made puppets, and created performances that included songs, personal stories, and comedy. As he worked with the new artists, he noticed people were using their puppets to tell stories. They expressed emotions and they enjoyed the chance to play and have fun. Staff applauded the participants’ short-term memory gains and tactile improvements.

“Plus, we were creating exciting work and performing for people,” Josh says.

Puppetry

One afternoon, a woman who was having a difficult day burst into the puppetry classroom. She was non-verbal but acted out aggressively in a way that could have potentially agitated others. As Josh and the students were rehearsing, she walked in and before she could disrupt the class, Josh made eye contact with her, and gently touched her shoulder. He quietly talked to her and invited her to join in or sit and watch. Within minutes she calmed down.

“I put a puppet in her hand and all of a sudden her language came back. It was like a switch had been turned on,” Josh says.  This woman filled him with hope and inspired him. “I want people to understand that people who are living with dementia sometimes need us to be patient and keep giving them chances,” he says.

Being in the Moment

Josh knew the potential power of theatrical play and experimented with improv sessions for people living with dementia. The experiment worked.

“For improv, you have to listen and react,” Josh says.  “The past or future doesn’t matter; it’s all about the present moment.”

He created a safe, nurturing, and creative atmosphere, offering structured improvisations, and invited his new improv team to play.

“They loved it and it was a thrill to watch them discovering new things and coming up with creative dialogues,” Josh says. “Play is an integral part of our lives and most of us need more of it.”

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 Memorable Meeting: KC Memory Cafe

You know what it’s like, creating a program series for the first time. You try to think of everything, knowing that you’ve probably left something out. You hope plenty of people will attend and worry that no one will show up. The weather teases you, threatening snow or rain, thunder or wind. The “what if’s” line up, a mean group of scolders: “What if the elevator breaks? What if the speaker doesn’t show up? What if the snacks don’t arrive? What if the KC Memory Cafe doesn’t work!”

But, as most of us know, worry isn’t really that useful.

The debut of the KC Memory Cafe was beyond our highest expectations! On March 20, 2018, at 10:30 at the Plaza Library, the educators from the Kansas City Zoo showed up early, riding the elevator down to the lower level with their exotic offerings. The weather was perfect and a lovely group of 40 plus care partners and people living with dementia joined us, delighting in the delicious snacks.  And they were even more delighted with the program, all of us laughing at the antics of the cockatoo, leaning forward to see the Vietnamese Tree Frog cozied in his glass aquarium, and petting the chinchilla, with a fluff of fur that felt like a cloud.

“I love this animal,” one attendee said, smiling at the blue tongued skink. 

“This is the softest fur I’ve ever experienced,” said another, reveling in the chinchilla. 

“That bird is so funny,” said another, laughing as the cockatoo bounced up and down, “dancing.” 

After learning about the animals, we talked about our own pet memories. It was a wonderful morning and we can’t wait for our next Memory Cafe, on April 17, 2018. 

Click here so you can experience the fun of the Cafe.

https://drive.google.com/open? id= 1mU8Iw83lGbhw6FeAVJ3VQ8xhe75qt YYm

Want to join us on April 17 for our next Cafe?                        Here’s the scoop!

Weather Wonders: The Inside Story

Metereologist Karli Ritter Reveals Weather Mysteries 10:30 am on Tuesday, April 17, 2018. Plaza Library Lower Level.   Join us for the KC Memory Cafe, a free event dedicated to creating educational and social experiences for people who are living with memory loss and for their care partners. 

Our Team — Standing: Emily Cox, April Roy, Carol and Dennis McCurdy. Sitting: Ron Zoglin and Deborah Shouse, Jennifer Walker, Mandy Shoemaker

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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Movies and Memories—An Oscar-Winning Experience

“Thank goodness for this program,” one of our Movie and Memories’ guests told us. “There are so few places Mom and I can enjoy going together these days.”

“Thanks for this cookie. I could really use a little nurturing today,” another said.

“My goodness, I was delighted to learn about this program,” another said.

“What a treat, to have these films and these treats for free,” a couple told us.

Everyone arrived ready for movie magic. One of our volunteers from the Alzheimer’s Association brought a generous tray of cookies and brownies to share with everyone.

“How will we ever eat all those cookies?” I wondered initially. Well, it turns out, we had a large and wonderful group of sweet sweet-lovers, who thoroughly enjoyed the films and the feast.

Our three Oscar-nominated shorts met with great approval and included Glas, Joe’s Violin, and Room on a Broom.  When Michelle Niedens, Director of Education and Programs at the Heart of America Alzheimer’s Association, asked us all, “Which short would you have voted for?” it was between the inspiring documentary of a Holocaust survivor giving his beloved violin to a blossoming music student and the beautifully inclusive and tender animated Room on a Broom.

Save Sunday April 8 at 2:00 for our next Movies and Memories event and join us for this meaningful dementia and family friendly film series. To make sure you know about the series, sign up for the library’s newsletter at http://www.kclibrary.org/newsletter/special-events-signup  We’ll be part of the Kansas City Film Festival—visit Kansas City FilmFest to learn more about their line up. Want to help us spread the word or have an idea for a great movie to show? Just email Deborah at myinfo@pobox.com

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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My Mom’s New Holiday Tradition: Smiling

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We roll into the memory care facility’s dining room just as the show is ready to start. The singer, Thelda, kicks off her shoes and presses play on the boom box. Above the cheerful sound track, she sings Jingle Bells. She dances across the room with the remnants of ballroom steps. She stops in front of Mom and sings right to her. She gets on her knees, so she can look into Mom’s eyes, and keeps singing. Mom notices her and smiles a little.

Thelda moves on, singing to each of the patients gathered around, so intent on making a connection that she often forgets the words.

“Is it all right for your Mom to come to Christmas holiday events?” the activity director had asked me, when Mom moved in.

“Yes, I’d like her to go to any activities. She likes the extra energy.”

I think Mom would approve of my decision, even though she has never celebrated Christmas. Growing up, her immigrant mother held on to the Jewish spirit of her home, kneading dough for Friday evening challah, observing each holiday and prayer period in her own way. Some orthodox women followed the religious law that commanded a small piece of the dough be burned as an offering to God. My grandmother was poor; she did not believe in burning good food, regardless of tradition. So she sacrificed a portion of the dough to her youngest daughter, my mother Fran. She created a “bread tail,” leftover dough that she baked, then smeared with butter and sprinkled with sugar . When Mom used to talk about her mother, she always mentioned this special treat.

Even when I was growing up, and we were the only Jewish family in our neighborhood, my mother still did not sing Christmas song. She let the holiday rush by her, like a large train, whooshing past and leaving her behind.

Now, I am singing Christmas carols to my Mom for the first time and she is smiling. She has moved beyond the place where the religions are different, beyond the place where she wants to separate the dough and make a sacrifice for tradition. Her new tradition is anyone who can make her smile.

With each song, from White Christmas, to Silver Bells, to Frosty the Snowman, Thelda moves back to Mom, tapping her, acting sillier and sillier. Each time, Mom lifts her head and widens her mouth for a second.

For her finale, Thelda puts on a big red nose and sings Rudolph. When she dances in front of Mom with that scarlet nose, Mom laughs, her face a miracle in pure enjoyment. I laugh too, so delighted to see Mom engaged and absorbed.

Two weeks from now, I will bring a menorah and candles into my mother’s room. My father and I will have a short Chanukah ceremony with Mom. She will pick at the shiny paper covering the Chanukah gelt (chocolate candy disguised as money). She will slump over in her chair. But she will come back to life when she sees me, her only daughter, wearing a big red nose as I light the menorah.Here’s to a meaningful and fun holiday season.

I look forward to connecting with you when I resume blogging in early January.

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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7 Tips for Reducing Caregiver Isolation

Some years ago, when my mom was diagnosed with dementia, I didn’t know anyone else who was going through this journey. I felt very alone, even though I had a beautiful network of friends. I turned to writing to help me make sense of the situation. Eventually, I gathered the courage to share my personal essays with others, often through simply reading my stories aloud to friends and family. Being able to share my thoughts and feelings on this deeply meaningful dementia experience was so therapeutic, and it inspired me to reach out to other caregivers. Through my years as a family caregiver and through interviewing dozens of caregivers and experts in the field of dementia, I gleaned these 7 tips for reducing caregiver isolation.

Listening

When my friend Karen asked me to tell her more about my mom’s life, I was thrilled. I had been so immersed in my caregiving responsibilities, I had forgotten Mom’s fascinating adventures as a nurse in WWII, her worldwide travels, and more. Simply asking questions about the person who is living with dementia and listening avidly to the stories is a gift to the caregiver.

Visiting

“Your mother is so interesting,” my friend Jane said. Jane had offered to simply come to my house and have a short visit with me and Mom.  My mother was going through a period of repetition and I had heard her tale of the natural hot springs in Iceland at least 113 times. But watching Jane lean forward, ask cogent questions, and smile at Mom allowed me to appreciate Mom’s stories in a new way. These were cornerstones in my mother’s life and Jane’s interest reminded me what treasures they were.

Enriching

Mom had been a vibrant movie-goer, an avid opera lover, and an ardent museum enthusiast. But when she could no longer go out, I loved it when people offered to bring arts, culture, and the occasional dog, to us. Studies show that even indirect contact with animals reduces stress. Visits from small dogs and cuddly babies boosted both our spirits and helped us feel connected with our community.

Bringing over an art book and gazing at favorite painters together invited out the creative spirit and were a catalyst for open-ended conversation. Singing and playing music with others stirred up positive memories and filled us with happiness and well-being.

Exercising

So often, caregivers forget the power of fresh air and exercise. They forget the joy of sunshine and trees.  When they don’t have the steam to set out on their own, offering to take them on a stroll, a run, to a yoga class, or just to sit on a bench in a park, can offer moments of connection and renewal.

Noticing 

“What can I do for you?” my life-partner often asked. Frequently, I was so overwhelmed I had no answer. So he asked me concrete questions. “Do you need any errands run?” “Would you like me to make dinner?” “Are there phone calls I can help you make? Grocery shopping I can do?” Offering to do simple tasks helped me understand I did not have to soldier through this alone. Help was all around me and one of my spiritual journeys was learning how to receive it.


Inviting

It’s not always easy to stay connected with friends who are living with dementia and their caregivers, but it is so worth it. Even when my mother felt lost at social gatherings, she still enjoyed the energy of being around empathetic friends. Even when she didn’t understand every speck of conversation, she relished being around others and meeting new people. So did my father and so did I. Having friends reach out with invitations reminded us we were still part of our community.

Asking

Sometimes we don’t know what to say to our friends who are caregivers for those living with dementia. We don’t know what to do. Then it’s time to simply state the truth and tell them, “I want to be there for you, to understand what you’re going through. I want to support you, and I don’t quite know how to do it. Can you guide me?”
Chances are the answer will be a warm hug and a resounding, “Yes.”

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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Inside Dementia: Finding Gifts in the Journey

“My husband and I have been married for 53 years,” a woman with delicately curled silver hair and mournful eyes told the group.  “But in the two years since he was diagnosed with dementia, our relationship has changed.” She dabs at her eyes with a tissue and takes a breath. “It has grown even stronger. We are closer than we’ve ever been.”

Ron and I were in a conference room of caregivers in Ft. Wayne, Indiana, presenting for the Greater Indiana Chapter of the Alzheimer’s Association. We had just shared my story, Love in the Land of Dementia, and we were all talking about the gifts we have found in the dementia journey.

Another woman, whose husband was newly diagnosed, talked about her frustration and impatience before the diagnoses.

“Now that I understand what is going on, I have vowed to be more patient. I don’t want to waste a minute of our time together.”

“My husband doesn’t know who I am right now,” another woman said. “But the other day, he gave me such a compliment. He told me, ‘I want to marry you.’”

She told us how she rummaged in her cedar chest and showed her husband their marriage certificate. He read it with interest. Then he looked at her, eyes shining, and repeated, “I want to marry you.” Those words, so filled with love, lifted her spirits immeasurably. “To think that even now, when he doesn’t remember much of our lives together, he still loves me so much, that means a lot to me.”

She smiled, as we all applauded this amazing love.

We heard more stories of amazing love at our earlier presentation in Merrillville, Indiana. When we talked about the gifts and blessings we had each discovered in the dementia journey, one woman told us, “I find it an honor to take care of my mother. She has done so much for me and I am lucky to get to care for her right now. I am glad to be able to show my unconditional love for her.”

People shared many blessings—patience, the increased ability to live in the present, gratitude, flexibility, humor—but a deepening of love was the overarching message. We felt it during our own caregiving journeys, and we felt it deeply in the presence of those caregivers.

 

“The best and most beautiful things in this world cannot be seen or even heard, but must be felt with the heart.”      Helen Keller 

To learn more about the work the Greater Indiana Chapter of the Alzheimer’s Association is doing, please visit : https://www.alz.org/indiana/

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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Everyday Heroes and Nine Great Things We Learned This Weekend

This weekend we were lucky to be around a lot of heroes—the staff and grantees of The Brookdale Foundation Group, which supports national Relatives as Parents Programs, along with Group Respite programs.  We loved the sense of commitment and community we felt at this event and we also enjoyed learning from other speakers and the attendees. Here are the nine great things we learned from this weekend’s conference.

I.

Explain

Kent Karosen, President and CEO of the Fisher Center for Alzheimer’s Research, spoke about his new children’s book, Why Can’t Grandma Remember My Name?  Written about the way the brain is impacted by dementia and the affects it has on children, the book is illustrated in brilliantly colorful art, created by children, juxtaposed with art by people who are living with dementia. To learn more, www.alzinfo.org

 

 

 

II.

Reframe

Frances Kakugawa, author of I Am Somebody, spoke of the powerful role poetry played in her caregiving role throughout her mom’s dementia journey. While scrubbing the floor after her mother’s bathroom accident, Frances thought, “There must be another poem here.”  She decided to consider herself a poet-caregiver, rather than a struggling-caregiver. Reframing her image and her language helped her transform her attitude. You’ll enjoy visiting www.franceskakugawa.wordpress.com  and learning more about Frances, her writing, and her many books.

 

 

III.

Play

Who knew you could have so much fun with poetry! Gary Glazner, for one, founder of the  Alzheimer’s Poetry Project, who lead the whole group in a rousing call and response version of several popular poems. Gary added in music, movements, and stoked up our enthusiasm and our energy. We also created a poem together. You’ll enjoy using his ideas to deepen your communications and your connections. Visit www.alzpoetry.com and treat yourself to his book, Dementia Arts: Celebrating Creativity in Elder Care.

 

 

IV.

Support

We were shocked and saddened to learn there are more than one million caregiving youth in our country, struggling to stay in school and keep afloat while taking care of ailing family members. Connie Siskowski’s organization, American Association of Caregiving Youth, provides support for these gallant middle schoolers and teens. To learn more about her program, visit www.aacy.org

 

 

 

 

V.

Care

How many of us take enough time to truly care for and nurture ourselves. Jane Barton, speaker, write, and listener, spoke eloquently of compassion fatigue, born of too much caring for others and not enough focus on self. We laughed, cried, and reminded ourselves of the importance of self-care. Learn more from her at www.cardinalife.com and see her book, Caregiving for the GENIUS: Understand the Journey from the Inside Out.

 

 

 

There were more amazing speakers, but we didn’t get to hear them because we were speaking all day Saturday, sharing two information-packed sessions of Connecting in the Land of Dementia and one session of  our beloved The Hero Project. But just because we were teaching doesn’t mean we weren’t learning. Here are just a few of the tips we gathered from our participants.

 

VI.

Give

As a way of adding meaning and purpose to life,  one memory care day group created dog biscuits to donate to their local animal shelter. They stirred up a healthy mixture of organic ingredients, used cookie cutters, and delighted a lot of lonely pooches.

VII.

Collage

Another day care center helped a non-verbal resident create her own collage. One caring person watched carefully as this elder looked through a magazine, pausing at pictures of interest. Then the caregiver tore the photos that had intrigued the woman. Together, they glued them into a collage that the woman enjoys looking at often.

VIII.

Sing

“Song titles inspire singing and conversation,” one participant told us. She shouts out familiar titles and someone in her memory care group usually sings the next couple of verses, with others joining in. This often sparks a conversation about the song.

IX.

Share

The sense of community and generosity during the weekend reminded us again of why we love doing this work and of the importance of sharing things that work, things that don’t, and asking about things we wish we knew. Often, someone else has an answer for us, usually one of those quiet, but powerful, everyday heroes.

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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Widening the World Through Travel

As the waiter served dessert, Lori La Bey looked around the table at her family and smiled. She couldn’t believe she had pulled this off — her children, her siblings and their children, and her parents all enjoying a Caribbean cruise together.  Her mother was living with Alzheimer’s and her father had brain cancer: they had assumed they wouldn’t get to travel again. They were beaming and Lori knew all her planning had been worth it. She was widening the world through travel.

She still treasures the family pictures from this trip. This meaningful travel experience inspired Lori, founder and host of  Alzheimer’s Speaks, to orchestrate a cruise for people who are living with dementia and their families.

“Travel is a normal part of life,” Lori says. “When you stop traveling, your world becomes smaller.”

From her years caring for her mom, Lori understands how easy it is to feel isolated and stuck. She also understands the joy of engaging in the world, trying new things, and meeting new people. Her trip enriched her family and she wants to offer others that gift of connection and adventure.

Lori also learned some tips from traveling with her parents. Here are a few ideas for creating a smooth traveling experience for yourself and for someone who is living with dementia:

Create a flexible travel experience. Lori chose cruising because it can be reasonably priced, you can unpack once and stay in the same room the entire trip, and there’s lots of flexibility with eating (including free room service), activities, and touring. Cruising is also ideal for the intergenerational experience, offering activities for all ages.

Make the person living with dementia part of planning the trip. Discuss the trip with all involved, asking for feedback and talking about what each person really wants to do. Incorporate those dreams into the trip.

Empower your travelers. Lori packed all her parents things into one giant suitcase. Her father had always been the one managing the luggage and he really wanted something to carry. “I hadn’t thought to pack a couple of small bags so he and my mom could feel like regular travelers,” Lori says. “People want something to be in charge of so they don’t feel left out.”

Work with a travel agent and make your life easier. Plan in advance for noise, long transfers, layovers, long car rides, and other chaos. If flying, call the airport if you need to arrange for wheelchairs or other inner airport transportation. To mute noises, bring earplugs. Carry along items that soothe and comfort each of us, including favorite music and head phones. If you’re cruising, talk to the cruise lines in advance, discussing special needs, including dietary, medical, and any mobility issues.

Take pictures and videos and document these precious moments. You’ll enjoy looking through these memories again and again together.

“Travel is about being together and widening your world,” Lori says.  “It’s a wonderful way to build those moments of magical and meaningful connection.”

For an amazing way to widen your world, consider Lori’s upcoming November Dementia Friendly Conference and Cruise. Lori and a team of educators, including a panel of inspiring people who are living with dementia, have planned a nurturing, connecting, educational, and inspiring Caribbean trip. For more information, visit, https://alzheimersspeaks.com/cruise-with-us

 

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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