Care Partnering

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.

CITLOD very smallLove in the Land of Dementia_cover

 

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.

CITLOD very smallLove in the Land of Dementia_cover

Educating on Dementia: A Vietnamese Doctor’s Quest

Throughout our journey in Vietnam, we met a number of inspiring elders. These include an 87-year-old public letter writer in the old Saigon train station, a 67-year-old woman carrying baskets of pomelos and bitter melons, a beautiful 74-year-old gardener hacking at weeds with a machete, a 100-year-old matriarch in a farming family, and an 83-year-old village chief. Because the life expectancy in Vietnam has risen over the last 20 years, its people are living longer. Along with that blessing comes an increased chance of dementia. Neurologist Trần Công Thắng. MD, and his team, Nguyen Tudny Vy and Le Thi Yen Vy, are dedicated to working with medical professionals and community members, educating on dementia.

“Many people think memory loss is just part of normal aging, ” Dr. Thang told us, when we visited him in Choray Hospital in Saigon. “We want people to understand that dementia is not a regular part of growing older—it’s a brain disease.”

Twenty years ago, few people were discussing dementia in Vietnam. But now, it’s a vital issue for two reasons. First, the country’s life expectancy has increased from age 64 to age 75. Second, many families no longer have seven or more children; they have two to three offspring. This intensifies the burden for family caregivers.

Dr. Thang is a researcher, speaker, educator, and a founding member of the Association of Vietnamese Alzheimer’s Disease and Neurocognitive Disorders. Through his classes and diagnostic clinics, Dr. Thang and his colleagues offer people much needed information and resources. He is partnering with a local rehabilitation hospital in creating a day program for those living with dementia. The program will offer cognitive stimulation and social engagement for those living with dementia.

Person by person, Dr. Thang is helping healthcare professionals understand the behaviors and issues associated with dementia. He hopes to make life better for family caregivers and their family members who have memory loss.

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.

CITLOD very smallLove in the Land of Dementia_cover

Dementia in the Land of Vietnam

“We are here to see Dr. Nguyen Thanh Binh, head of the Department of Neuroloy and Alzheimer Diseaese,” I tell the guard at the National Geriatric Hospital of Vietnam in Hanoi, showing him my folded paper with her name printed on it.

He grins, then points to a full size sheet of paper in the security booth’s window with our names printed on it. We follow him into the hospital and up a flight of stairs. After a short wait, Dr. Binh warmly welcomes us into her office. She has a table ready with chairs and tells us she has invited others from her department to talk to us as well. Another Dr. Nguyen Thanh Binh arrives. Her Phd thesis was on easing the burden for family caregivers.  Dr.  Ngan Thi Hong Anh, doctor of rehabilitation, joins us. She seeks non-medical solutions for improving quality of life.  Nguyen Ngoc Anh, RN, completes our group. She works daily, communicating with and caring for  people who are living with dementia.

For two years. Dr. Binh and her team have been running a pilot study, inviting people who are living with dementia to attend a three day a week program that focuses on engaging socially, physically, emotionally, and intellectually.  They use music therapy techniques, they bake traditional cakes together, and they enjoy various arts and crafts projects. All these therapies offer physical and occupational therapies, as well as vital social interactions. The project has been a huge success, with both family caregivers and people living with dementia enjoying the results. Besides giving the caregivers a much needed respite, families report improved quality of life and and increased abilities in the activities of daily living.

“Symptoms improve,” Dr. Binh reports. “Patients want to keep attending and families have their burdens eased.”

Dr. Binh and her team have extended the program.

Often people come to the hospital, seeking answers to issues related to memory loss.  Many elders live at home with extended families, and their children and grandchildren are frequently confounded by their cognitive impairments and other symptoms of dementia. Dr. Binh and her associates offer education, information, and comfort. They describe the disease and try to help families move beyond their initial feelings of hopelessness. They encourage families to accept and embrace their elder and support him or her in living a meaningful life.

We left our meeting with these remarkable women feeling inspired. They are doing important work and making a difference for the people of Hanoi and Vietnam.

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.

CITLOD very smallLove in the Land of Dementia_cover

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.

CITLOD very smallLove in the Land of Dementia_cover

A Winning Combination: Children, Exercise, and Music

An orderly group of five-year-olds walk into the dining room at Vernon Manor in Viroqua, Wisconsin.  The residents are waiting for them. Each child goes up to an elder and introduces him or her self.  Then Ingrid Constalie, AD-BC, CDP, Board Certified Activity Director and Certified Dementia Practitioner, talks to the assemblage about the importance of staying fit. The residents nod sagely: many of them are in their eighties and nineties and they exercise every day. But the days that the kindergartners join them are the best, a winning combination or children, exercise, and music.

The residents love teaching the kids the alphabetic movements to the iconic YMCA song. And the kids are a burst of giggles and wiggles as they fold their arms into wings, strut around, and teach everyone The Chicken Dance.

Ingrid’s focus is creating moments of joy, engagement, and connection.

Her intergenerational activities spark the residents and reduce the stigmas of aging and dementia by educating and informing local children, teens, their teachers, and other members of the community.

“This dancing and exercise exchange is simple, energizing, and very successful,” Ingrid says.

Sing-O at Bingo

Music Bingo offers middle schoolers a chance to work with Ingrid’s elders.

“This is about creating a good experience for your partners,” Ingrid coaches the children in advance. “You are their connection to the world.”

Ingrid plays an opening melody, using songs such as “Happy Trails,” “You Are My Sunshine,” and “Singing In the Rain.”  Those who know the title shout it out. Often, partners confer with each other. The children help locate the song title on the bingo card and place a poker chip on each answer.  Even people living with advanced dementia enjoy listening to music and being around the children.

Most of the time, the school children are chatty and at ease. But one girl was scared coming into the care community.

“I paired her with Helen, a woman deep into dementia,” Ingrid says. “Within minute, Helen had her arm around the girl and they were both laughing.”

Even children who act up at school are wonderfully behaved during the Bingo experience.

Creating Comparisons and Compassion

Recently, Ingrid orchestrated a project with a high school English class. They interviewed residents and did a comparison and a contrast. For example: “While Clara is getting out of bed with the assistance of staff, I am getting ready for school. While she wheels herself down a long hallway to a dining room, I am eating toast with my sister.”

The teenage journalists asked simple questions, like “What is your morning like?” “How do you spend your afternoon?” “How do you like to dress?”

The students wrote up the results and made booklets. One family was so inspired by the insights in the booklet, they later read parts of it at the woman’s funeral.

Ingrid’s intergenerational connections explore understanding, create empathy, and help create exciting new relationships.

 

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.

CITLOD very smallLove in the Land of Dementia_cover

 

Six Secrets of Dementia Inclusive Holiday Cooking

 “Who prepared this delicious meal?” a friend asked during a holiday dinner.

I named my brother Dan, our head chef, first. Then I included the support team—myself, my mom, my daughters and nephews.

“Did I help?” Mom whispered as I passed her the mashed potatoes.

“You sure did,” I told her. ”You mashed the potatoes, put the marshmallows on the sweet potato casserole, and mixed the fruit salad.”

“That’s good,” she said. “I like to help.”

Our desire to help and contribute to seasonal celebrations doesn’t end with a diagnosis of dementia. It’s lovely to linger in the kitchen together, preparing food for the holidays. It’s even lovelier when you can adapt and enjoy dementia inclusive holiday cooking so that people of varying abilities can participate.

Rebecca Katz, author of The Healthy Mind Cookbook, sees food as a great equalizer, something anyone can enjoy regardless of abilities. Fixing a delicacy for someone offers a tangible and delicious way to give back.

Here are six secrets of iementia Inclusive holiday cooking.

  • Leaf through a favorite family cookbook or recipe box and use the pictures and recipes as a catalyst for conversation. Ask open-ended questions, such as, ”What does that brownie recipe make you think of?” “What do you like about the holiday season?”
  • Chose a time of day when you’re both rested.
  • Create a comfortable kitchen environment, by playing familiar seasonal songs you can both hum or sing along to. Reduce extraneous noise and distractions, such as a television in the background.
  • If you wish, take photos during the experience. That way, you can relive the adventure and share with family and friends.
  • Indulge in instant gratification, if possible, by sampling your work when the cooking is complete.
  • Even if the person living with dementia can’t help prepare food, he can still enjoy sitting in on the action and the conversation.

Whether you’re stirring a pot of orzo or dropping mint leaves into cool water, enjoy your time of creation and connection in the kitchen.

A longer version of this piece originally appeared on Joan Lunden’s excellent website:      Enjoy Dementia Inclusive Holiday Cooking.  Thanks to Sue Fitzsimmons, MS, ARNP, Judith Fertig, author of The Memory of Lemon, Kate Pierce, LMSW, Alzheimer’s Association Greater Michigan Chapter, and Rebecca Katz, author of The Healthy Mind Cookbook

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.

CITLOD very smallLove in the Land of Dementia_cover

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.

CITLOD very smallLove in the Land of Dementia_cover

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.

CITLOD very smallLove in the Land of Dementia_cover

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.

CITLOD very smallLove in the Land of Dementia_cover