Care Partnering

Movies and Memories: Traveling the World Without Leaving Kansas City:

“I’ve traveled the world. Our family moved a lot when we were young,” one of our guests told us, at our August Movies and Memories program. She and her husband bent over our world map and stuck stars on some of the many places they’d lived. Another guest sighed when he looked at the map and saw Vietnam. He had served in the military there. A couple talked about living in Berlin when the Wall came down. 

Our Movies and Memories travel films included forays into Paris, Iceland, Capetown, and Seoul. 

“It was relaxing just watching the scenes from Paris,” said Ah’Lee Robinson, director of the Kansas City Boys and Girls Choirs. He and his singers treated us to an inspiring concert, warming us up for the films. 

“Oh dear, now I want to go to Iceland,” another guest said. 

In between clips, we passed around exotic spices for everyone to smell. At the end of the movies and memories adventure, everyone took home a special “Passport” booklet, created by the library’s Emily Cox, so they could record impressions and memories.  To experience the event, click here.

Here are some passport questions to discuss at home:

Share some travel memories.

What is one of the most beautiful places you’ve ever visited?

What’s the farthest you’ve ever traveled?

What country has the best food?

How many of the US states have you visited?

Thanks to our wonderful volunteers, Sharon and Julie, who brighten our events by bringing treats, making popcorn, and making everyone feel so at home.

Thanks to Craig Eichelman, State Director, AARP, for helping us spread the word about this program.

We are so grateful for the continuing support from the Kansas City Public Library. They are amazing champions for people who are living with dementia and their care partners. They also provide scholarships for hard-working people whose higher education has been interrupted by life circumstances. Their community programs benefit early readers, job seekers, and people who are new to KC. Ron and I use their books and other services every week!

Please join us for our next adventure — Moana. This movie is so inspiring and great for all ages.

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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Celebrating Great Connectors Throughout the Dementia Journey: Music, Nature, and Laughter

When care partners gather and trade stories and ideas, there’s usually magic afoot. We felt that magic when we met with a group of family and professional care partners to celebrate great connectors throughout the dementia journey. We presented engaging ideas using music, nature, laughter and more.

Lisa Vetter, Director of Healthcare Sales & Marketing,  Santa Marta Senior Living Community, invited us to speak at an event announcing the community’s new care partner support group. The group is led by Jennifer Walker, RN, BSN, Clinical Community Liaison, Kansas City Hospice & Palliative Care. Jennifer also facilitates the KC Memory Cafe and she is compassionate, informed, and smart. Most importantly, she has a fantastic sense of humor.

Ron and I shared ways to stay connected through singing and music, looking at works of art together, bringing nature indoors, and laughing. And our audience shared their experiences as well.  

Here’s a story about nature that inspired us.

Marcie took her mom, who was living with dementia, on a fascinating monthly outing: they drove out into the country to look at the full moon. Her mother didn’t talk much anymore, but she loved seeing the night sky and gazing at the magnificent moon. One evening, as the moonlight spread over the car, Mom began singing, When the moon comes over the mountain. Marcie had never heard the song before and her eyes filled with tears at hearing her mom sing so strongly and clearly. 

Here’s a story about the power of familiar music. Karen’s mom was a devout Catholic, living with dementia. Though there were many things she didn’t remember, including her daughter’s name, when she attended Sunday mass, she melodically sang every word of every hymn. 

We loved sharing with this group of dedicated and compassionate care partners, who were all seeking ways to stay connected. 

Here’s an extra tip from Connecting in the Land of Dementia:  When you want to boost energy and lift spirits, add a splash of laughter into your life. Look at a clock and say, “We’re going to laugh for 30 seconds,” and start ha ha ha-ing. Or pretend you’re talking on the phone and hearing a hilarious joke. Or warble out the Ha Ha Chorus by singing the Happy Birthday song in “ha ha ha” syllables. 

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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How Has Television Shaped Our Lives: Insights from Nick Haines, KCPT

How has television shaped our lives? Nick Haines, Executive Producer Public Affairs/News, at KCPT, helped us count the ways at our August Memory Cafe. Fifty people joined us for this witty and illuminating program, including some PBS favorites: Big Bird and the stars of Downton Abbey. Nick began by showing us a few of the 20 most iconic TV clips of our time, including the space landing, Johnny Carson’s farewell show, and the tragedy of 9-11.

Then we moved onto commercials. Does anybody remember when people dressed up to get on an airplane and domestic flights served hot food on real china dishes? How about a young Donald Trump  starring  in a Burger King commercial? The cafe crowed went crazy over  a white-coated MD, starting that he and his colleagues preferred Camel cigarettes. 

Nick had us guess the two most popular non-sports TV events. (Mash and Roots.)  And he set us laughing with tag lines from various products, such as M&M’s, Frosted Flakes, and  Alka Seltzer.   

Nowadays, people watch on so many venues and are often not conversant with the same shows. But during  our cafe, we were all tuned into the enjoyment of sharing laughter, memories, and ideas. Thanks to Nick for his great talk and to KCPT for all the marvelous programming and community work they do.

Click here to experience the Cafe

And thanks to all our teammates and community volunteers.

KCPT is one of the Kansas City Public Library’s many partners in programming. Our library is an amazing champion for people who are living with dementia and their care partners. They also provide scholarships for hard-working people whose higher education has been interrupted by life circumstances. Their programs benefit early readers, job seekers, and people who are new to KC. Ron and I use their books and other services every week!

 

 

 

You don’t need to be artistically inclined to enjoy our next cafe on September 21st. We hope you can join 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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International Insights: Caring in Croatia

Even before Tomislav (Tom) Huić, Vice president of Alzheimer Croatia had a personal involvement with dementia, he was helping the Croatia Alzheimer’s Society with their marketing. As a professional marketer and co-founder of a successful ad agency, he wanted to help the fledgling, all-volunteer non-profit, and he often offered them his professional expertise. Then his mother began having memory issues and Tom became more involved. Today, he is one of the three full-time volunteers who run the 20-year-old agency.

We met with Tom at the Hemingway Bar and Cafe in Zagreb, Croatia, wanting to learn more about ways the society was educating and assisting people across the country and the region. 

“Every year, we offer a professional workshop,” he says. That workshop, plus donations, provides the Association’s only operating money. 

Tom understands the importance of collaboration and education. With a grant from the European Union, he and partners created dementia training materials for nurses. They presented the information to healthcare professionals in parts of Croatia and Slovenia. The programs were well received and he is working on presenting them in other parts of the region. 

Tom also created a partnership with pharmacists in Zagreb. When elders came in to pick up medications, they were invited to take  a short cognition exam. Sixty percent of the participants failed the test and they were given contact information for the Society. But only a handful of those contacted Tom and his team. 

“We still have stigma here,” Tom says. “Plus, many people mistakenly think memory impairment is a natural part of growing older.”

They are collaborating with nursing homes and with governmental health agencies to provide guidelines for memory care beds. 

No money. No budget. Lots of ideas. Too few people and too few finances to implement them. The task ahead of Alzheimer Croatia seems daunting. But Tom and his team are not daunted. They are educating family and professional care partners through a variety of pathways, offering much needed information and support.

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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Dementia Friendly Cafes: Inviting Creativity and Connection

       More than 10 years ago, Jytte Lokvig, PhD, was scanning the internet for additional information about dementia. On one of her Google searches she saw the words “Alzheimer’s Cafe” posted by Dr. Bere Miesen, who founded the first Alzheimer’s cafe in Leiden, the Netherlands in 1997. That phrase electrified her.  She leapt out of her chair, much to the dismay of her cat, who was cozily sleeping across her feet, and declared, “I am going to make that happen in the U.S.!” She’d been working with people who were living with dementia in community settings for some years, orchestrating art, music, craft and other meaningful projects. But she felt something was missing. That something, she realized, was engagement in the community.
        From that inspiration, Jytte created the original U.S. Alzheimer’s Cafe in Santa Fe, NM in 2008. Ten years later, there are more than 300 cafes in the US that invite creativity and connection through dementia friendly cafes.   
       Recently, Ron and I visited Jytte’s cafe.
       “The word cafe denotes relaxation, companionship, a place where someone can go in and out without judgement,” Jytte says.
       The Santa Fe Alzheimer’s Cafe is held in an accessible room in the Children’s Museum. Jytte designed her sessions for a small audience and offers a mixture of art projects, singing, jokes, unusual facts, pleasant conversation, and snacks. 
Empowering people to make choices is an important component of Jytte’s cafe: so many people living with dementia don’t have the opportunity to choose. As people arrived, Jytte invited them to choose from an array of healthy snacks. For the art project, she offered a rock or a plate to paint on. 
       “Would you like a round plate of a square one?” she asked.
She had laid down dark green plastic so people could easily see their white plates against the green background. She squeezed bright acrylic paints into palettes and everyone began painting. One guest painted with her care partner, an activity they often do at home. Another guest instantly incorporated a rock,  her palette,  and her paper plate into a fascinating and colorful montage. Her best friend, Susan, delighted us all by bringing her African Grey Parrot, Cochiti, who perched on her head during the session and happily posed for photos and ate dried goldenberries.       
       While we painted, we talked, about art, our lives, the bird, and movies. We all loved movies and Susan told us that one of their Santa Fe theaters offered care partners and people living with dementia two tickets for the price of one. That is an example of one of the fascinating tidbits we learned at the cafe. (We are going to learn more about that program and see which of our wonderful theaters in KC want to offer that discount.)
       “This intimate setting and small group creates a sense of family,” Jytte told us as we hugged everyone goodbye.
She was right. After only two hours, we felt connected to each of the attendees and we were sorry to have to part.  But we were inspired to return home to Kansas City, with fresh ideas for our Cafe.
To set up a cafe atmosphere for an art project in your own home:
  • Arrange a few snacks.
  • Invite a guest or two, if you wish. This is an intergenerational project. 
  • Put a brightly colored plastic covering on the table.
  • Squeeze some acrylic paint into a palette. Or use tempura or water colors.
  • Offer a choice between two brushes.
  • Offer a choice between two canvases: a cardboard paper plate, a river rock, paper, or other.
  • Relax and let the painting unfold.
  • If your loved ones need a little help, you can paint together. Or you can rest their hand on yours, while you paint to get them used to the movement of the brush.
  • Appreciate the art by commenting on the color, the design, the shapes. Don’t ask them to identify the art: enjoy it as it is. 
  • Weave conversation into your time together. 

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For more information about Jytte and her work, visit :
Want to set up your own cafe? Consider Jytte’s book.
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 Stirring Tea Party Brings People Together

It took us an hour to prepare for our festive tea party and we all enjoyed every moment of it. Jennifer Walker, RN, BSN, Clinical Community Liaison, Kansas City Hospice & Palliative Care, knows how to throw a party. She brought pastel table cloths, a charming complement of paisley-printed cups and plates, along with tiered cookie holders.  

For the ladies, she offered colorful fascinators (small hats you can clip into your hair) and bright boas. For the men, she had bow ties and top hats. She also brought the ingredients for tea time sandwiches and a variety of cheeses, veggies and meats. Kathi Michaels and Heidi Underwood from Leawood Gardens, and Lainey Berry, from the Law Office of Love & Blomquist, generously provided an array of baked treats, including legendary cookies from McClain’s Bakery and delectable lemon squares. 

Our guest speaker, Emilie Jackson from Emilie’s French Teas, shared information about the international history, social rituals, and health benefits that come with sipping a cup of tea. After her talk, everyone set to work creating cucumber and cream cheese sandwiches, with the crusts cut off, of course.  We were able to smell several different teas and each person chose a favorite to savor. The food and drink were delicious but even better were the conversations. Each table got into discussions about tea, coffee, life, and more.  One guest enjoyed a tete a tete in French with Emilie, who is originally from France. 

The gathering was so much fun and so engaging, with all the aromas, tastes, and textures, that none of us wanted to leave.  It took us even longer to clean up after the stirring tea party, because we had to help eat the leftovers!

Click on this link for the inside story on our tea party: Memory Cafe, Tea Party

Here are a few of our favorite tea quotes:

Where there’s tea there’s hope. Arthur Wing Pinero

If you are cold, tea will warm you; if you are too heated, it will cool you; If you are depressed, it will cheer you; If you are excited, it will calm you.  William Ewart Gladstone

I like the pause that tea allows. Waris Ahluwalia

A woman is like a tea bag – you can’t tell how strong she is until you put her in hot water. Eleanor Roosevelt

Please join us for our next cafe when the great Nick Haines brings us the inside story on KC local news. We can’t wait!

Our team, ready for tea

Thanks to our sponsors:

The Kanas City Public Library

The Alzheimer’s Association

The Creativity Connection, Deborah Shouse and Ron Zoglin

Kansas City Hospice and Palliative Care

Arts & Aging KC

KC FilmFest

Prairie Elder Care

The Villages of Jackson Creek Memory Care

Dennis and Carol McCurdy, Community Volunteers

 

Please email Deborah at myinfo@pobox.com if you need additional information.

And, we hope you can join us for our next events.

 

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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One-Minute Tips to Boost Your Happiness

I am thrilled to be a contributor to Chicken Soup’s new book, The Empowered Woman. I’m going to be featured on publisher Amy Newmark’s podcast on May 25, where I talk to her about my “empowered” story and about the dementia journey.  Click here to listen to the podcast.  Amy is very inspiring and I wanted to share some of her One-Minute Tips to Boost Your Happiness,

Speaking of empowered women, Amy Newmark left her high-powered career as a Wall Street analyst to take over the Chicken Soup series. After years of immersing herself in true stories of miracles, lessons learned, and hopes fulfilled, she wrote her own book,Simply Happy. Here are some of her “One-Minute Tips to Boost Your Happiness.”

Amy’s Insights for Care Partners

Counting Blessings Adds Up to Happiness

“The gateway to happiness is counting your blessings,” Amy says. “If you’re not grateful for what is in your life, how can you be happy?”

Scientific studies have proven that people who are actively grateful are happier, healthier, and more productive. Plus, they get along better with family members, colleagues, and others.

“You can easily learn gratitude,” Amy says.

To start, each day jot down three things for which you’re grateful. Strive for three different ideas each day. At the end of the month, you’ll have documented nearly a hundred blessings.

“Writing and speaking your gratefulness changes your perception,” Amy says. “You start looking for good things during the day. You can share your blessings with your partner and encourage him to consider his own.”

Some people drop the blessings into a box, and then read them at the end of the day or the end of the month.

Smiling Serves You

Smile even when you don’t feel like it. Often, when you smile, people smile back. This boosts everyone’s spirits and energy. If they don’t give you a grin, it doesn’t hurt you.

“Your smile will change the way people react to you,” Amy says.

Zipping from Zero to 60 Brings Joy

Set a timer for 60 seconds and zip through a task you’ve been putting off. File the insurance policy that sprawls across the dining room table. Unload the dishwasher. Take your vitamins.

“Doing even one of those tasks every day will lighten your spirits,” Amy says.

Dropping Perfection and Embracing Your Own Abilities

Abandon your pursuit of perfection and strive for your own version of excellence.

“When you try to be perfect, you can’t get a lot done,” Amy says. “For most of us, it’s better to do five things at 90 percent than one thing at 100 percent.”

I love Amy’s final piece of wisdom:

“Treat yourself nicely,” she says. “Use the fragrant soap you save for guests. Indulge in a rich bit of good chocolate or a fresh crisp apple. Put the good sheets you save for company on your own bed.

Give yourself a tiny pleasure every day.”

For more happiness boosts, read Simply Happy. 

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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What They Don’t tell You About Dementia: A Guest Post by Laurie Scherrer

Laurie Scherrer is a light in the universe. I met her on the radio, when she co-hosted the ground-breaking program Alzheimer’s Speaks, with Lori La Bey. I was instantly inspired by Laurie’s warmth, honesty, humor, and insights. Each time I talk to her, I have fun and I learn from her. Recently, I asked her, “How can I support you in the wonderful advocacy work you are doing?” Laurie answered, “You can repost this blog, What They Don’t Tell You about Dementia.”

Laurie’s post is not just inspiring: it could be life-changing for someone who is newly diagnosed with dementia. After reading it, you’ll want to subscribe to Laurie’s blog. 

What They Don’t tell You About Dementia: by Laurie Scherrer, DementiaDaze.com 

When I was diagnosed with dementia (Early On-Set Alzheimer’s and Frontotemporal Degeneration) the doctors told me and my husband:

  1. My working days were over
  2. I needed to “Get my affairs in order and see an attorney”
  3. The time would come when I wouldn’t recognize my loved ones
  4. For any additional information we should go to the Alzheimer’s Association Website
  5. I may experience “sun-downing” in the late afternoons
  6. Come back in six months to see how rapidly you have progressed

What the doctors SHOULD have told us:

  1. There are many things that can aggravate or enhance the confusion and agitation that comes with dementia. With observation and patience, you may be able to recognize what triggers these symptoms. For example noise, stress, over-stimulation or lack of sleep. These triggers are not the same for everyone.
  2. Once you recognize the triggers you may be able to find ways to lessen their impact. For example, use earplugs when in a store or restaurant to reduce the noise, keep gatherings small to avoid over-stimulation, and when needed take an afternoon nap.
  3. The more independence you give up and allow other people to take care of – the more dependent you will become on others. Change your thought process from “I can’t do this anymore” to “How can I accomplish this task (what changes or modifications can we make to assist me).”
  4. On days when you are using a lot of cognitive reserve your symptoms may be strong (usually in the afternoon). This is your brain saying it is tired and needs a break.  Try listening to some music or taking a nap.
  5. It is OK to take some time to grieve for your losses and accept that life will change. Most people need to experience this after diagnosis and again as their abilities change. In addition to grief, you may experience shock, anger, denial and sadness. These are normal reactions that can help you come to terms with your disease and hopefully help you to move on.
  6. Get involved with others with dementia as much as possible. There are a number of groups that offer video chats with other people living with dementia so you can socialize, ask questions and encourage each other.  dementiamentors.org offers a mentor program so you can have weekly chats with someone living with dementia.
  7. Stay active and socialize with old friends and new. Once you curl up into yourself it is hard to get out.  Enjoy life, friends, family and activities for as long as you can.
  8. Build your passion to fight back! Sometimes it is the passion within us that drives us to continue fighting.  Get involved in advocacy work to educate about dementia. Contact Dementia Action Alliance at daanow.org to get started.
  9. You will have good moments when you feel “normal” and think you should go back to work and you will have bad moments when the world is a fog (dementia daze zone). You may feel confused and disoriented and find it difficult to think.  There will be times when nothing seems to make sense and you can’t remember how to do things and then the fog will go away (at least for awhile).  It’s OK to admit you are having a bad day.
  10. Dementia is more than memory loss. You may experience problems with your balance, lights flickering in your eyes, hallucinations, develop fears, or smell things that aren’t really there. Don’t be frightened, keep track of any changes or strange feelings to see how often they occur
  11. Dementia can progress fast, but in most cases it is a long slow progression. You may want to keep your affairs in order, but by implementing changes and strategies you will be able to overcome many obstacles and live a beneficial and happy life for some time.

Since I’m sure your doctor said about the same thing as mine, I hope you find this helpful.  Now go enjoy life – Live, Love and figure out how to make adjustments to over come your obstacles.

My motto is: I don’t want just to survive – – I want to live and thrive!

Love & Laughter,

Laurie

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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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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Father’s Day Tips: Four Fabulous Ways to Celebrate When Dad has Dementia

“Dad always liked a big Father’s Day celebration,” my friend told me. “But now he’s deep into dementia; I’m not sure he would notice.” When Ron’s dad Frank relaxed into dementia, Ron and I often struggled with how to approach Father’s Day. Even though Frank didn’t know what day it was, we still wanted to honor Frank as a father. Here are four fabulous ways to celebrate when Dad has dementia.

Reminiscing over Favorite Foods

We brought in a meal created from some of Franks’ current favorites and some gems from the past. Frank’s wife Mollie made her world-famous brownies and legendary rice pilaf.  We bought cooked steaks and baked potatoes and as we ate, we talked about meals past. Inspired by the familiar tastes, smells and textures, Frank recited one of this favored old phrases: “I’m cool to other women but I’m hot tamale (Hot to Mollie.)”

Naming His Tunes

Frank and Mollie liked to dance occasionally and for one celebration, we printed out song lyrics and sang Frank and Mollie some of their old favorites. We didn’t sound like Sinatra or Fitzgerald as we warbled “It Had to be You,” or “Stardust” or “Three Coins in the Fountain” but we did sound sincere!

Life Stories

Ron and I created a HERO Project for Frank, a story-scrap book that incorporated highlights and photos from Frank’s life, along with a meaningful storyline. We also created one for Mollie. We read the HERO Projects with Frank and Mollie, using the stories as conversational catalysts. Frank enjoyed the experience; we enjoyed reading aloud with Frank and remembering shared experiences.

Celebrating Special Qualities and Life Lessons

As we sat together, we talked about some of Frank’s many stellar qualities, which included his easy-going nature, his natural charm, his entrepreneurial spirit, and his willingness to try new things. “Did I really do that?” Frank asked, as Ron described the bowling alley Frank and his brother owned and operated.  “You did,” Ron said.“That was really something,” Frank said.

Frank’s comment summed up our Father’s Day celebration: it was really something. Just being together was wonderful. And taking time to really celebrate Frank with a tender mixture of food, photos, stories, and conversation was pure magic.

For more ideas on Naming His Tunes, please visit the exciting MusicandMemory.org

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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