Inspiration

76 Trombones Star in June’s Movies and Memories Event

In The Music Man, people flock to hear about the idea for a band. They imagine the shiny instruments, the colorful uniforms, and the scruffy boys in their small Iowa town transformed into revered members of a marching band.

In the Movies and Memories showing of this iconic film, life imitated art. During intermission, the Dirty Force Brass Band marched down the aisles of the Truman Forum, playing a zesty jazz number. People from the first floor of the library raced down the stairs, wanting to get closer to the music. Many of them stayed to watch the second half of the movie!

This was the longest movie we’ve shown at our series and it was a big success. What a treat to see it on the big screen and to enjoy a very young and adorable Ronny Howard as Winthrope, the agile and the charismatic Robert Preston wooing the melodic Shirley Jones, as Marian the Librarian. And is there anything better that seeing a movie partially set in a library while you’re sitting in a library.!

You can click on this link to get the flavor of the event:

Movies and Memories: The Music Man

“We loved the music,” one family told us.

“This is my daughter’s favorite musical,” a mom told us, smiling at her four-year-old daughter. 

“All this is free?” one of our guests said, relishing her popcorn and cookie.

Every two months, the Movies and Memories treats the Kansas City community to a dementia and family friend film, along with live music and delicious snacks, and a surprise at the end. Everyone who attended was excited to take home various kinds of colorful noise makers.   #

 

 

 

Please join us for our next dementia-friendly events:

Mark your calendars for these upcoming events:

JULY

Tu 17 – Memory Café: Tea Party

AUGUST

Tu 21 – Memory Café: Nick Haines from KCPT

Su 26 – Movies & Memories: Around the World / KC Boys Choir

SEPTEMBER

Tu 18 – Memory Café: Nelson-Atkins

OCTOBER

Tue 16 – Memory Café: Wornall House

Su 21 – Movies & Memories: Moana, uke players, hula dancers

NOVEMBER

* Wed 14 – Memory Café: Dog & Pony & Pig Show

DECEMBER

Su 9 – Movies & Memories: holiday movie shorts & cookie decorating

Tu 18 – Memory Café: Santa & Symphony

Thanks to all our teammates who help make these gatherings happen: 

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

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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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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 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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Moving from Depression to Purpose: Wisdom from Dementia Advocate and Mentor Robert Bowles, Jr.

Once again, Robert Bowles, Jr., age 65,  could not sleep. Since he’d been diagnosed with Lewy Body Dementia two years ago, his nights had randomly been plagued with terrifying hallucinations and vivid nightmares that he often acted out. He was exhausted, depressed, and anxious. Plus, he had had to sell his beloved pharmacy and prematurely end a meaningful 40-year career as the community’s trusted pharmacist.

That dismal night, Robert awoke at 1:00 a.m. and dragged himself into his office. He felt a horrible heaviness in his heart

and he cried out to God.

“God,” he said, “Take me home. I don’t want my family to go through this disease.  I can’t endure this any longer.”

As he sank into a chair, he heard a voice, as strong and clear as if someone was sitting right beside him: “Use your five life principles for people who are living with dementia.”

Robert slapped his hand onto his forehead and said to himself, “God is not through with me yet.”

And that realization filled him with hope.

Amending His Purpose: The Five Principles

Love, care, education, encouragement, and hope: these were the principles Robert adhered to with his work, his family, and in his community.

“Understanding that those same tenets could help families affected by dementia was a transformational experience that gave me purpose,” he says.

Robert believes, “People living with dementia need to be encouraged to maintain purpose. While your original purpose may not be possible, you can always modify your vision and continue to live with depth and meaning.”

Throughout his career, Robert was always purpose-driven and outcome-oriented. Along with those qualities, he infuses his current advocacy and mentoring work with compassion. Early on, he realized, “People don’t care what you know; they want to know what you care about.”

Standing up for Personhood

“I made a decision that I would not let dementia define who I was,” Robert says. “ I’m still Robert. I believe in personhood.”

He also believes in learning, overcoming fear, and trying new things. Robert serves on the Georgia Alzheimer’s and Related Dementias (GARD) State Plan Group. He is involved with the Lewy Body Dementia Association (LBDA) and works with the Dementia Action Alliance and the Dementia Spotlight Foundation. He qualified as  a trainer at the Rosalyn Carter Institute and he completed the coursework to became a Certified Eden at Home Associate.  Robert has also been trained in Dementia Beyond Drugs, which teaches ways to decrease behavioral expressions without medications.

Recently, a lady asked him, “How are you able to speak when you have dementia?”

Robert answered, “When I sit there waiting to speak, my mind is all over the place. I wonder, ‘Will I be able to speak, or is the train going to jump the track?’ Then I tell myself, “I am going to have fun.”
He has fun and he speaks from his heart. Audiences connect with him.

Recently, Robert told his neurologist, “I don’t have time to die.” Every year, he typically speaks to more than 100 groups, sharing his story, breaking down stereotypes, educating people on dementia, and inspiring people to live with heart and purpose. ##

Practical  Tips from Robert

Adopt the ASAP philosophy: Acceptance, Socialization, Attitude, and Purpose. Accept your disease and know you are not your disease. Keep and expand your social network. Live with a positive attitude. Be fueled by a purpose.  ASAP was one of the touchstones that delivered Robert from “the Valley of Darkness.”  “Both care partners and people living with dementia benefit from ASAP concepts,” Robert says.

Prepare for your doctor’s visits. As a practicing pharmacist, Robert noticed many people did not prepare for medical visits and therefore didn’t get the information they most needed. He keeps a list of his symptoms. As changes occur, write them down. Before the visit, select your top three issues. Hand this list to the  nurse to give to the doctor. “You save time and get better outcomes,” he says.

For more information about Robert, please visit:

https://lbdlivingbeyonddiagnosis.com/index.html

For more information about living well with dementia, please visit Dementia Action Alliance, https://daanow.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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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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Let’s Go to the Movies: A Dementia-Friendly Series

“Let’s go to the movies,” my dad often said to my mom. My parents would have loved our Movies and Memories series, now starting its second year.  We are excited to announce our partnership with the Kansas City Boys Choir and the Kansas City Girls Choir this season. Some of their outstanding performers will be joining us at each event.

Already, the series is making a difference in a variety of ways. Additional libraries in Missouri and other states are interested in implementing the program. And our library is so committed to becoming more dementia-friendly that it is having special training for its staff, courtesy of the Alzheimer’s Association — Heart of America Chapter. Please share this invitation with those who would enjoy it. And if you’re in the Kansas City area, please join us. It’s free and open to all. Let’s go to this movie series!

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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Connecting Through Reading Together: Wisdom from Anne Vize

Connecting through reading together has always been part of my life, starting with my mother reading me Mother Goose and Grimm’s Fairy Tales. Even when Mom was living with dementia and could no longer track a Shakespearian play or a complicated novel, she loved holding books and she enjoyed hearing lyrical poetry. I was excited when I discovered the work of Anne Vize, Curriculum and education writer, instructional designer, and author of  ‘Reading in the moment – activities and stories to share with adults with dementia’ published by Speechmark.

Anne graciously shared her insights for this blog.

Connecting Through Reading Together: Wisdom from Anne Vize

Why is reading together so important?

Reading is a powerful but sadly often forgotten tool for supporting people who have dementia. Sometimes people worry that they might not read fluently enough, or they might make mistakes when they read, and so avoid doing it all together. But people have been reading together throughout time, and the idea of sharing pose, poetry and stories is an integral part of who we are as people. Just because someone has dementia does not mean they are unable to benefit from the joy of sharing a moment in time, with a great book or piece of text.

How do you get started?

Start small and keep the reading sessions to around 10-15 minutes to begin with. Plan ahead so you know what you are going to read and the sort of ‘voice’ you will use to read it. Some texts are more suited to a bouncy, entertaining voice while others are better suited to a slow, lyrical, smooth reading style. Pick the one that suits the piece you are reading, as well as the one that suits who you are as a reader.

How do you set the scene? 

Sometimes a sensory experience to begin with can be useful, or a brief discussion about the personal experiences of the listener that might relate to the story. You can make a link with seasonal activities such as Easter, Christmas, Passover, Independence Day or Anzac Day, but be aware that these festive or commemorative times might trigger particular memories for some people that might be unintended. Be sensitive and make sure you know a little about the piece you have chosen and the person you are reading to.

What kinds of stories/books do you suggest? 

Read something you are comfortable with. Avoid texts with long, complex sentence structures or multiple characters, as these can be difficult for the person living with dementia to follow. Focus on stories you can read in a single session, with a limited number of characters, and a plot that only moves in a forwards direction (not something that jumps from one period of time to another, as sometimes happens in the short story genre).

How do you use the stories as conversation catalysts? 

You can link what you read with a discussion, activity, or sensory experience, if it seems appropriate. For example, you could read the Australian bush poet Banjo Patterson and then combine this with a sensory experience looking at photos of the Australian bush, exploring plants, and leaves outdoors or listening to the sounds that horses hooves might make on the ground. If you are comfortable wearing a bush hat (called an Akubra in Australia) and a check shirt as you read some bush poetry, all the better!

Books, globe and glasses isolated on white background with a clipping path.

How do you make the experience meaningful and fun? 

Use your judgment and knowledge of the person you are reading to. Think about her needs and personal comfort and monitor how she is faring during your reading session. Think about sensory elements in the room that might interfere with your reading,  such as outside noises, distractions outside the window, people moving in and out with meals or drinks, and the like. These can all take away from your reading experience.

Reading has a tendency to create a feeling of peace, calm and harmony for people and can be a trigger for more conversation and interaction. Even if the person does not recall the reading experience after you have finished, they will retain the mood and feeling that the piece has created for them and this may well last for long after the actual reading experience has ended.

To learn more about Anne, please visit, https://www.facebook.com/pg/Anne-Vize-Writing-Services-126820110730385/posts/?ref=page_internal

Reading in the Moment: Activities and Stories to Share with Adults with Dementia

https://www.amazon.com/Reading-Moment-Activities-Stories-Dementia-ebook/dp/B073RPNFXZ/ref=sr_1_1?s=books&ie=UTF8&qid=1501074110&sr=1-

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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They Yearned for Freedom

I often think of my grandparents, each of whom bravely made his and her way to America. They sought opportunity and they yearned for freedom. Freedom to be safe from persecution, freedom to practice their religion, freedom from stigma,  freedom to be their own true selves. The same things we all want. Here’s to living our dreams and to helping others live their dreams.

When I was growing up, in the 1950s, the Fourth of July was a true day of freedom. We had a huge family picnic at our relative’s house. The festivities included a swimming pool and was held in a neighborhood without fences, which meant we kids could run breathlessly through the yards, chasing each other, playing tag, baseball and hide ‘n seek.

But first, we politely greeted our relatives. Then our aunt said, “How about a drink?” to my parents. And “Kids, there’s sodas in the cooler.” Dad wanted Scotch on the rocks and Mom asked for gin and vermouth. Mom joined the women who were arranging the food on long picnic tables and Dad hung out with the men, who were grilling burgers and dogs.

That’s when the freedom began. My younger brother Dan and I, normally allowed to drink only juice and milk, eagerly surveyed the array of icy sodas and we both chose Grape Nehi.

Quickly we were swept into a game of tag. Some of the kids were already wet from swimming and others still wore shorts. Underneath our clothes, Dan and I had on our bathing suits and were ready to leap into the pool and get immersed in a game of Marco Polo.

The adults were busy with drinks and conversations and no one admonished us to be quieter, slower, or more polite. We were a band of glowing energy, sweating with the joy of freedom and racing to escape being IT. We were a burst of independence, throwing off our shorts and t-shirts and cannonballing into the pool, shrieking, splashing, and laughing.

After several hours, the women beckoned us over. We dropped onto the lawn and ate ravenously off drooping white paper plates loaded with baked beans, hot dogs, corn, cole slaw, and potato chips. Then we spit watermelon seeds at each other. Finally, we sated ourselves with rich chocolate cake.

By then, the fireflies flickered and glowed. My uncle handed out sparklers without even warning us to be careful. Those dangerous sulphury sparks thrilled us. We raced about, a sparkler in each hand, writing our names on the sky, streaking across the dewy grass, leaving a trail of smoldering light behind us.

At the end of the evening, my uncle set up the fireworks. We sat on blankets, this time with our families. We were smudged, sweaty, and stained with watermelon juice and dirt. I leaned against Mom and my brother snuggled next to Dad. As the fireworks spurted up into the sky, we pressed our hands against our ears, the noise and brilliant layers of light bursting around us.

“God bless America,” my father said.

“America,” the adults echoed, their voices hushed and reverent.

Only later, when I was older, did I realize the significance of the holiday: my relatives were all first generation Americans—and on that day, among others, they were grateful their parents had escaped the tyranny and religious persecution of Poland, Russia, and Hungary and had come to this welcoming land.

But that night, I was simply worn out from my own childlike version of independence. Dan and I leaned against our parents, fighting our tiredness, and let the sounds of freedom ring us to sleep.

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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Redefining Dementia and Focusing on Wellbeing

Several months ago, I was delighted to write an article highlighting some of the American leaders in dementia care. I will be occasionally spotlighting luminaries from that article who are redefining dementia and focusing on wellbeing.

A version of this piece appeared in Signpost Journal: Journal of Dementia and Mental Health of Older People. This excellent journal from Wales, UK, offers a variety of informational and inspirational articles. I am honored to be a contributor.

Redefining Dementia and Focusing on Wellbeing

Late every afternoon, Roger paces the corridors, pausing at the locked door, fiddling with the keypad, sometimes even setting off the alarm before he resumes his pacing. Instead of labeling Roger’s behavior as “sun downing,” Allen Power, MD, teaches practitioners to ask themselves: Which vital element of health and happiness is missing from Roger’s life: identify, connectedness, security, autonomy, meaning, growth, and joy. By doing this, Dr. Power is redefining dementia and focusing on wellbeing.

Dr. Power is a geriatrician and educator on transformational models of care, with a focus on people living with changing cognitive abilities.  He is also the author of two groundbreaking books, Dementia Beyond Drugs and Dementia Beyond Disease: Enhancing Well-Being.

He defines dementia as, “A shift in the way people experience the world around them.”

“I believe that most of people’s on-going distress is due to the erosion of one or more aspects of well-being, from the care environment, and/or the person’s cognitive changes. Imagine these domains of wellbeing as seven glasses being emptied. Start filling the glasses and notice the results.”

water glass

As Dr. Power trains and consults with memory care communities around the world, he sees meaningful results from this compassionate approach. Suddenly, Mary is not constantly calling out night and day. Bill is not hitting the aides when they take him to the shower. Roger is not setting off the alarm or trying to open the exit door.

“There’s no sure answer,” Dr. Power says. “You need to understand the individual and experiment until you reach the root of the problem. People may be looking for connectedness. They may feel anxious and insecure. They may be bored.”

If someone is repeatedly trying to leave the building, Dr. Power might ask: Are they feeling insecure? Are they feeling lonely and trying to reach someone they love? Are they yearning to connect with an important part of their identity, such as a beloved garden, horse, dog, or pick up truck?

Working toward an Inclusive Future

Dr. Power uses a strength-based approach to work on enhancing wellbeing. He encourages developing “brain ramps,” cognitive supports that help people move through the day in meaningful ways.

“With this positive approach, I can now look at a challenging scenario and offer insights,” Dr. Power says.

Beyond the care of the individual, Dr. Power believes in examining ingrained rituals and routines of institutionalized care, including all meals at a certain hour, with an aim of moving to a more individualized and meaningful mode of care.

“We can make mundane activities such as bathing or getting ready for bed more meaningful and relational than we normally do in long-term care,” he suggests.

“We need to support people instead of dehumanizing them,” he says. “We need to be inclusive and try harder to understand them.”

Dr. Power believes integration into society is a basic civil right.

“Imagine if people who lived with cancer, arthritis, or diabetes could only live with others who shared their medical condition. There’s a problem with seeing the disease instead of the people,” he says.

Dr. Power is contributing to a future where all communities are dementia inclusive and where dementia is just viewed as another way that people see the world.

For more about Allen Power, MD, internationally known geriatrician, educator, and author , please visit:

Website:  http://www.alpower.net

Dr. Power is participating in Dementia Action Alliance’s  Reimagine Life with Dementia Conference, June 25-27.

http://daanow.org/wp-content/uploads/2016/10/DAA-Conference_042817.pdf 

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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