September’s Memory Cafe featured a lively team of educators from the Nelson-Atkins Museum of Art. Using the arts to draw us together, they showed us the Chinese art form of painting pictures of bamboo. About fifty of us gathered in the the library’s spacious lower level. Colorful plastic cloths covered our tables, making it easy to distinguish our drawing paper and painting supplies. All of us eagerly dipped our special bamboo brushes into the ebony paint and made short pushing movements, replicating segments of the plant’s stalk. Then our educators showed us drawings of bamboo foliage and we experimented with wispy thin lines of leaves.
• To add extra meaning, connect the artistic activity with something in your partner’s past.
• Invite an intergenerational mixture of artists, from children, grandchildren, art students, and volunteers to join your partner and add encouragement.
• Create a variety of art-related activities, including visiting galleries or looking at pictures from magazines, as well as painting, drawing or various media.
The table was spread with an array of Czech delicacies: apple strudel, special sandwiches with flowers of ham atop fresh baguettes, a bountiful tray of strawberries, grapes, and apple slices.
“This is the way we welcome people here in Prague,” said Lucie Hajkova, social worker and coordinator of respite care for the Czech Alzheimer’s Society.
Ron and I were visiting the Gerontological Centre and the Czech Alzheimer’s Society, which are both housed in the same building. The two organizations work together to offer clients everything they need, from psychological counseling, to memory testing, to social work services, to healthcare. We came to learn and to present a laughter yoga session.
We gathered with staff members around the table to learn about the center, which was started in 1997 by Iva Holmerova, MD. along with Hana Janeckova, PhD. Hana was putting together training materials for caregivers when she was contacted by Alzheimer’s Disease International. They wanted to know more about her work and they invited her to an international conference in Jerusalem. That conference was a turning point. Hana left it inspired and determined to help Czech families that were dealing with dementia. She contacted Iva and both saw the need to offer education, diagnosis, support, and care for people living with dementia and their families in the Czech Republic. Today, both centers are flourishing.
We were impressed with the dementia services they offered, which included home care for people who need help with bathing, dressing, eating, exercise or more. The building holds a respite center. When families need renewal time, or when people living with dementia need extra care or healing time, they can stay in respite for up to a month. The Centre also hosts a day program that offers a variety of activities in a homey and comfortable setting,
Even more impressive than the Society’s services were its staff. Each had a passion for this work, a love for those who are living with dementia, and a compassion for their families.
We had a wonderful time sharing a laughing session at the day center—our first international facilitation. We sat in a beautiful circle of people living with dementia, staff, family, and friends. We couldn’t have done it without our translator, Eliska, who captured the energy and essence of what we were saying. And once we all started laughing, we were beyond the constraints of language. Click here to experience a bit of laughter in Prague.
Eliska Brouckova, psychologist, consultant/advisor for people with dementia and their care givers
Martina Matlova, Director
Petr Veleta, PhD, dancer, dance therapist
Marketa Splichalova, psychologist, consultant/advisor for people with dementia and their care givers
Eva Jarolimova, PhD, psychologist, consultant for people with dementia and their care givers
Hana Janeckova, PhD, co- founder of the Czech Alzheimer Society, head of governing board of Czech Alzheimer Society, University teacher, researcher
Lucie Hajkova, social worker, coordinator of respite care in homes of people with dementia.
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.
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.
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.
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.
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:
- My working days were over
- I needed to “Get my affairs in order and see an attorney”
- The time would come when I wouldn’t recognize my loved ones
- For any additional information we should go to the Alzheimer’s Association Website
- I may experience “sun-downing” in the late afternoons
- Come back in six months to see how rapidly you have progressed
What the doctors SHOULD have told us:
- 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.
- 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.
- 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).”
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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
- 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,
“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!
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
Creating Low-Cost, Engaging Activities
Alice looks blankly at the magazine as Kimberly Clark turns the pages, pointing to various pictures. “What do you think of this? Or this?” she asks, pointing to a rose, a table set for tea, a bundt cake. When Kimberly touches a picture of a train, Alice smiles. Although Alice, who is living with dementia, can no longer tell her own stories, Kimberly has heard tales of her adventurous past. When Alice was a restless young woman, she and her new husband occasionally jumped on a freight train and took a ride. This photo will be the centerpiece of the collage they are making. As Program Coordinator at ARC Jackson County, a lifespan respite program in Medford, Oregon, Kimberly is an expert at creating low-cost, engaging activities for people who are living with dementia.
Creating collages is easy, inexpensive, and relaxing. Medical offices will donate their old magazines and she also collects periodicals from friends. If Kimberly knows her client’s family stories, she seeks magazines that have illustrations relevant to them. She lays out a variety of magazines and asks, “Which one do you want to look at first?” They sit together and Kimberly slowly turns pages, listening for comments, watching body language, and facial expressions. When she sees interest or excitement, she may ask, “What are you looking at?” or “What does this remind you of?” She then tears out the picture and sets it aside, so it’s not distracting. Once they have a nice group of photos, they start on the collage, cutting and pasting together.
“The project is empowering and can spark discussion,” Kimberly says. “Plus, we can take our time and we have something artistic and interesting to discuss when it’s done.”
She often uses the finished collage again and again as a conversation starter.
Kimberly also engages people through simple nature walks, where they notice the colors, shapes, wildlife, and collect vibrantly colored leaves, pinecones, acorns, and more.
She celebrates people’s individuality by writing their name on watercolor paper in black marker and inviting them to fill in the letters and surroundings with colored pencils.
When people need a little exercise and a good laugh, she invites her dog to join them in a sparkling game of balloon volleyball. Her dog is an expert at keeping the balloon aloft and soon everyone is supporting him in this uplifting endeavor.
“Even if you’re not in a good mood, doing some kind of art, exercise, or creative project makes you stop and appreciate the present,” Kimberly says.
- Invite several musical kids/friends/relatives to come over, tell you about their instrument, and help you make a sound on it.
- Have fun playing imaginary instruments along with a big band or big orchestra music.
- Listen to favorite instrumentals and talk about any memories evoked.
- Look at pictures of various instruments and share stories. Ask open-ended questions with no right or wrong answers, such as, “ What do you think about the piano?” “What are some of your favorite instruments?”
Please join us for our next events:
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.
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