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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Celebrating our Mothers 

If my mother were still alive, I would be taking her roses and chocolate this Mother’s Day. She would be delighted and her delight would magnify when my daughters and her great-grandchildren arrived. Love is such a beautiful glue, such a simple and strong way to stay connected. I wanted to share this story from Love in the Land of Dementia, as a way of celebrating our mothers.

 The Woman She Was

My friend Karen gives me a gift: she says, “Tell me about your mother.”

We are sitting in a quiet mid-afternoon café and I let the question sink into me.

When friends occasionally ask me, “How is your mother doing?” I have different answers, depending on the situation. If we are in one of those conversations that are like confetti in brisk wind, I say, “She’s okay.”

If we are sitting across from each other and my friend is looking right at me, I answer, “She’s pretty deep into Alzheimer’s.”

“Does she recognize you?” she might ask.

“No, but she may recognize I am a person she likes,” I answer.

That usually ends that conversation.

But “Tell me about your mother,” is an invitation I don’t usually get.

“What would you like to know?” I ask.

She stirs her iced mocha. “Whatever you want to tell me,” she says softly. “I would like to know about her life and her interests.”

Since my mother has been in the nursing home with Alzheimer’s, I have seldom talked about the person she used to be. Occasionally my father and I reminisce about family vacations and outings. I sometimes ask Dad questions about our growing up days and the early days of their courtship. But I rarely think about the woman I knew all my life, the mother, grandmother, artist, gardener, compassionate friend, avid reader, bird-watcher, early morning walker, lemon-meringue pie baker. That woman is gone and I have spent a lot of energy learning to know and appreciate the woman who now commandeers her body.

As I consider what I want to tell Karen, I remember visiting my mom’s best friend, Bel, in California when I was a teenager. Bel, who was spunky and adventurous in a way that seemed so different from my conservative mother, drove me from Berkeley to the small resort where I would work as a chambermaid for the summer.

“Do you know how I met your mom?” she asked me, as we drove down the winding roads, past fragrant stands of eucalyptus trees.

“In Iceland, during the World War II,” I said. I had heard stories of the two of them taking a break from their work in the hospital by skiing, then stopping for a soak in a hot springs.

“No, we met earlier in Chicago. We were both nurses working the twelve-hour night shift. The hospital had a room with a couple of bunk beds so we could rest on breaks. One night I walked in there and heard the most heart-breaking sobbing. It was Frances, crying her eyes out. I asked her what was wrong and she said, ‘Nothing.’”

I smiled. That sounded like Mom, never wanting to admit anything was wrong.

“Then I asked her again and she sobbed out that her husband Sam had died six months ago from pneumonia. She was so sad she didn’t know if she could go on. A bunch of other nurses and I were going to Florida for a short vacation and I persuaded your mother to join us. But as it turned out, we never went; a week later I decided to join the Army and I encouraged her to come along. We’ve been best friends ever since.”

When I heard this story at the age of seventeen, I was too young to fathom my mother’s grief and despair. By the time I told Karen the story, I had some sense of what my mother must have gone through.

“Your Mom was really brave, to serve in the Army during wartime,” Karen says.

I feel a little swell of pride. Mom’s tales of traveling in the darkest night on the troop ship, with bombs falling nearby, were so familiar I had never considered her bravery and courage.

Now I tell Karen how my father, encouraged by Bel’s husband, wrote Mom a letter, telling her he was ready to marry a nice Jewish girl. Was she interested? Was she available?

After some correspondence, Mom surprised herself by agreeing to meet him in Chicago. At the end of the week, my father asked her to marry him. She considered the offer for three weeks and accepted. Their whirlwind romance was fueled by practicality.

“What a great story,” Karen says. “Your mother must be an amazing woman.”

Sparked by Karen’s interest, I let myself feel my love for my mother as she used to be. I am in tears by the time our conversation ends.

“Thank you for asking me about my mother,” I say to Karen.

“Your stories make me want to call my own mom and hear her stories again.”

As I drive home, I think of more “mom” stories to share with my children and my brother. I see myself, along with my brother and father, as the carrier of my mother’s sacred legacy. I imagine myself tenderly fanning the embers, adding dry leaves and crumbled paper, creating a blaze with each memory. I realize I don’t have to give up Mom’s old self: I can be her historian and her scribe, carrying her stories with me, and making sure they live on.

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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The Power of Play in the Dementia Journey

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

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

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

Puppetry

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

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

Being in the Moment

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

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

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

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

Deborah Shouse is the author of Connecting in the Land of Dementia: Creative Activities to Explore Together and Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.

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A Memorable Meeting: KC Memory Cafe

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

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

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

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

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

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

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

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

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

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

Weather Wonders: The Inside Story

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

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

Deborah Shouse is the author of Connecting in the Land of Dementia: Creative Activities to Explore Together and Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.

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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.

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Using His Voice and His Skills:  Mike Belleville’s Tips for Living Well with Dementia

“Here’s some medication,” the neurologist told Mike Belleville. “See you in six months.” The doctor stood up to leave, but Mike just sat there, exhausted from months of struggle and confusion, worn ragged from all the tests and consultations. For months, Mike, age 52, had been “hiding under a rock.” His mind wasn’t working right and he worried he’d make a mistake, so he withdrew from his busy life. Now, he was numbed by the diagnosis he’d just received; younger onset Alzheimer’s.

Those three words seemed insurmountable.

“My wife and I had no connection to support services and we had no idea what to do next,” Mike says. “We felt so alone.”

Without his job as a Senior Telecommunications Technician at Verizon, his community volunteer projects, and his hobby of photography, Mike sank into a depression. After several months, his wife found a program at their Alzheimer’s Association that focused on finding a purpose and living well with dementia.

“From meeting others who had the diagnosis, I realized, I can still enjoy, do, and learn,” Mike says. “But more importantly, I realized that I have a voice. I want to use that voice for as long as I can.”

Speaking Up

Even though he had no experience with public speaking, Mike plunged in and became an outspoken advocate, visiting Washington D.C., and speaking at a number of dementia forums.

“Somehow, I was comfortable discussing dementia,” he says. “Even when I was interviewed in front of 1300 people, I felt like I was sitting in a coffee shop, talking to a friend.”

He joined the advisory board of the Dementia Action Alliance and expanded his speaking and advocacy work.

Cooking Up New Skills

Mike was frustrated that he could no longer contribute financially to his household. So he searched for ways he could help around the house. He volunteered to do laundry and soon learned he did not “know when to fold ‘em.” Then he made a discovery: he could combine his desire to learn, his creative curiosity, his love of technology, and his desire to help through the joys of cooking.

Prior to dementia, hamburgers and hot dogs comprised Mike’s culinary repertoire: he could grill with the best of them.

“Thank goodness for Pinterest and YouTube,” Mike says. He searches for recipes on-line, then scans YouTube for a demonstration video, which he watches several times. He uses an App called Paprika, so he has the recipe in front of him. Then, Gordon Ramsey style, he lines up all his ingredients.

“Through trial and error, I learned to put away each ingredient after I added it in,” Mike says. “That way, nothing gets used more than once.”When his wife returns from work, they put the dish on the stove and cook the rest of the meal together.

“She’s very appreciative of my new talents and I’m happy to be exercising my brain and nourishing our family,” Mike says.

Putting Purpose to Technology

Early on, Mike volunteered at a local senior center, starting a technology group called, Mike’s Google Gals. Once a week, he helped people with their phones, tablets and computers. When he and his family moved, he volunteered to host a free Tech Corner on Dementia Action Alliance’s website, offering his problem solving skills as needed. He helps people get on line so they can participate in a vibrant virtual community.

“I get just as much out of this as I put into it,” Mike says. “The more I stay active, the better I am.”

Mike and his wife share an electronic calendar, so she can support him with his schedule. His vibrating smart watch offers reminders of meetings and appointments.

“Because I’m wearing the watch, I don’t have to worry about misplacing it and missing a text or an email,” Mike says.

Mike envisions home automation devices extending beyond moderating lights and temperature.

“I have an issue with anxiety,” Mike says. “I would like a wearable devise that automatically detects my anxiety. As I become more stressed, the device could turn on my TV, which would be tuned into a soothing video of my wife talking to me.  Or it could turn on a calming musical playlist.”

Mike also envisions sensors that would alert his wife if he turns on the stove or walks out the front door. He would like to help develop these types of products.

Recipe for Living Well with Dementia

Mike views living with dementia as his new career.

“I’m using the same skills I honed in my earlier career,” he says.

His prescription for living well includes staying socially engaged, finding a purpose, and helping others.

At first, Mike saw his diagnosis as the end, but now he’s busy living. He has the Alzheimer’s logo tattooed on his arm with the motto, “Live life today.”

 

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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 Transferring Skills and Adapting Purpose: Wisdom from Paulan Gordon

As Director of Operations for a national call center, Paulan Gordon’s work required an intense travel schedule, detailed project management skills, and a rigorous adherence to industry standards. So when she started feeling confused, she attributed the struggles to stress. Some days, she felt so overwhelmed that she locked herself in her office and called her husband to come pick her up early.

She was asked to step down from her position. Initially, the loss of her career was both financially and emotionally staggering.  Suddenly, she had no purpose, no income, and no peer group. She had to reinvent her life.

In 2012, at the age of 57, Paulan was diagnosed with vascular dementia. After a period of uncertainty, Paulan began using her interpersonal, communication, and management skills and volunteering as a mentor and a dementia advocate.

“I’ve learned there’s a lot more to life than success in business,” she says.

Building Friendships

When she was working, Paulan was so busy she didn’t have time to build friendships. Now, through her mentoring, she has developed deep connections with others who are living with dementia.

“The relationships you create within the walls of dementia are so intimate,” Paulan says. “People talk very openly about their personal problems and challenges. I feel enriched, being part of these conversations and having such close friends.”

Her work as a dementia mentor has also given Paulan a sense of purpose.

“I work with four people and all of them appreciate my phone calls and my caring. That appreciation boosts my spirits,” she says.

Through her mentoring and advocacy work, she’s met doctors, lawyers, teachers, entrepreneurs, and others who have applied their intelligence and skills to living successfully with dementia.

Speaking out for Adaptation

When Paulan gave business speeches, her hands grew clammy and her mouth dry. She battled nervousness and worried about getting facts wrong and making errors.

“Now, I don’t get very nervous,” she says. “I’m speaking from my heart about things close to me, so I can’t make a mistake. Plus, I’m motivated: I want to help others and I want people to understand the truth about dementia.”

 

Letting Go of Difficulty

“You’ve asked me that question five times already,” Paulan’s husband says.

“Then it must be really important,” she answers.

Paulan is happy she can laugh at trying situations. She has let go of things she can no longer do. She stopped driving because spatial relationships were difficult for her.  Paulan knows she’s forgetful and sometimes repeats herself. Her husband and family take that repetition in their stride.  She’s also trained her family not to interrupt her when she’s talking, because she can easily lose track of what she was saying.

“My husband doesn’t call attention to my deficits and I forget I have them,” she says.

Proactively, he reminds her about meetings and appointments. She uses a big planner and makes detailed notes, including instructions on how to sign onto the internet, and notes on various conversations.

Changing Reading and Money

Paulan is constantly using her creativity to solve problems. She was an avid reader, but her memory retention has diminished and understanding complicated novels with dozens of characters became a challenge.

“If I put down a book, I can’t remember what happened at the beginning,” she says. “Although there is an upside to the situation: I could save money reading the same books over and over again.”

She temporarily put down her tomes and started reading short stories and magazines. This allowed her to continue her beloved hobby without so much frustration.

She also worked around her reduced mathematical abilities. When she shops, she hands the cashier an extra dollar, so she doesn’t get overwhelmed by counting out coins.

“I hope people are honest when they give me change,” she says.

Stirring up her Spirits

“I don’t worry about dying” she says. “I basically feel positive.”

Many people have a distorted view of dementia. With her speaking and writing, Paulan helps people understand the truths of the disease.

“I like sharing ways to support friends and loved ones who are living with dementia,” she says. “This information helps prevent decline and dramatically increases the well being of both care partners and people living with dementia.”

Meanwhile, Paulan’s advocacy and mentoring work has filled her life with depth, friendships, creativity, and purpose.

To learn more from Paulan, order her 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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