Posts Tagged ‘Alzheimer’s Caregiving’

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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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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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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Creating Low-Cost, Engaging Activities

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. 

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 Creates The Sounds of Music: A Visit from the Kansas City Symphony

If there’s anything more fun than a one-man band, it’s a one-woman orchestra. On May 15, Margaret Halloin graced the cafe with an astonishing array of instruments. She invoked our inner Itzhak when she introduced us to the versatility of the violin. One moment she used a series of chords to transport us to a hoedown; then she built the tension by creating the sounds of of a chase scene.  We were mellow with the cello and sliding cool with the trombone. We could all feel the beat as she tapped and shook a variety of percussion instruments. And then, she invited all of us to play
Instantly the room transformed from a quietly listening group of adults to a boisterous band of emerging musicians. One couple beat on a drum together. A woman tentatively held the violin. When Margaret helped her coax a sound of out it, she burst into delighted laughter. People tried the cello, the gong, the bongos, and the French horn. Even better than the sounds of music were the spurts of laughter and the lively conversations. After our chaotic impromptu concert, we gathered in small groups to talk about the music in our lives. One man had been a professional pianist. Several people had played in marching bands. Some had never touched an instrument. Until today. 
“Music is one thing that is universal and that brings us all together,” our cafe facilitator, Jennifer Walker, RN, BSN, told us.  
We all applauded. We had gone from a one-woman orchestra to a 50-person orchestra in a matter of an hour and we were feeling energized, happy, and filled with the sounds of music.
Here are some tips for creating your own instrumental experience:
  • 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?”
 Many thanks to the Kansas City Symphony for coming to play with us. 
A special thanks to Margaret Halloin and to Stephanie Brimhall, Education Manager. For more information about the Kansas City  Symphony, please visit: http://www.kcsymphony.org
For more information about the KC Memory Cafe, please visit: https://www.facebook.com/kcmemorycafe/

Please 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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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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Movies and Memories: Laughter Triumphs Over Weather

It’s a Sunday morning in early April and we were excited about our Movies and Memories laughter program that afternoon at 2:00.

Then, the unthinkable happened. It started to snow, blanketing the daffodils and tulips with just enough flakes to make people want to cozy up at home. 

What did we do? Laugh, of course.

Laughter was the theme of our April program and we had excerpts from the inestimable Mr. Bean to anchor our program.

As Emily from the Kansas City Public Library, Plaza Branch,  made our popcorn and other library staff readied the technology, we accepted the fact that we might have only our intrepid volunteers in the audience. We all vowed to have a great time anyway.

Musician Richelle Basgall regaled us with songs and stories and our guests began to arrive.  Soon we had about 30 people who ignored the weather and were ready for fun. And fun we had. One of our volunteers brought us sumptuous cookies and small cakes. The aroma of fresh popcorn warmed us all and we laughed our way through a hilarious clip of Mr. Bean playing miniature golf. Then we passed out jokes, which we laughingly shared with each other. (What kind of sandwiches do astronauts eat: Launch meat! Why did the oil painting get sent to jail? It was framed!)

After watching Mr. Bean’s laundromat escapades, we had a laughter yoga session. We didn’t have to worry about traditional physical yoga postures—laughter yoga includes clapping, gestures, playfulness, and breathing. Everyone was a hearty laugher and we were all relaxed and smiling as we watched Mr. Bean’s horror as he tried to cope with raw oysters at a fancy restaurant.

Our ending surprise was a delicious way to take Mr. Bean home— gourmet jelly beans!!

Click here for a short video experience. 

Stay tuned for our next Movies and Memories event in August!

Want to have a movies and memories event right in your own home?

Here are a few tips:

If you’d like to make this an intergenerational experience, select a movie or clips you all might enjoy.

Choose a time of day when the person living with dementia will have good energy.

Get your favorite movie treats ready.

Create times to pause and chat about what you’ve seen. 

Print out simple jokes as a great way to spread the laughter.

If you wish, offer a surprise at the end, either something that reminds you to laugh or smile. And if you like sweets, our jelly beans were a huge hit! With all those flavors, you have a lot to talk about!

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 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.

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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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