Presenting to Care Partners in Tortola: The Power of One Person to Make a Difference

The founding of the Virgin Islands Alzheimer’s Association in Tortola, BVI, is about the power of one person to make a difference. It started at a Rotary Club meeting in 2013 when a fellow Rotarian confided in Edna Williams, “I have been diagnosed with Alzheimer’s.”

He told her how hard it was to find support and resources. Edna felt compassion for her friend and others in his situation. As a trained social services worker, human resources consultant, and woman of action, she went to work to remedy the situation. The results: a vibrant Association recognized by Alzheimer’s Disease International. The Association and its many volunteers serve as advocates for people who are living with dementia and their friends and families.

We were honored to spend time with Edna and to share our presentation with a group of family and professional care partners, social workers, and community and spiritual leaders.  As we talked about the strength of music to keep us connected, Dawn, the daughter of Edna’s Rotarian colleague, the man who had inspired the founding of the Association, stepped forward to tell us her own story. 

For several years, her father had been listless and withdrawn, seldom showing interest in anything. She mourned his father’s dynamic personality and tried many things to lift his spirits and pique his interest. Then she came upon a favorite song of his from years back, a lively tune with a Latin beat. 

“When I played that song for him,” she told us, “he came to life. His eyes brightened and he began to mouth, then sing the words. He leaned forward in his chair, wanting to get up and move. It was such a meaningful transformation. The music connected with him and that helped him connect with us.”

Her touching story was a reminder that arts and creativity can go beyond the rational mind and the spoken word and awaken our hearts and spirits. 

As we shared ideas for staying connected with each other, regardless of our abilities, our own hearts and spirits were expanded by our time with Edna and her group. It’s wonderful to live in a place of breathtaking beauty. It’s even greater to live in a community where people reach out to help and support their neighbors.  

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.

CITLOD very smallLove in the Land of Dementia_cover

Upcoming KC Dementia Friendly Events

Please join us for these upcoming KC Dementia Friendly events, specially created for people who are living with dementia and their family, friends, and care partners.

All are welcome.

Click to view informative and inspiring short videos on our YouTube channel

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.

CITLOD very smallLove in the Land of Dementia_cover

A Dream Came True at The Red Ballon Movies & Memories

“I wish I had a red balloon,” one of our guests said, after the inspiring ending of the short film, The Red Balloon. Moments later, the dream came true. Each guest was offered a buoyant scarlet balloon, the magical symbol of a meaningful film.

The Movies & Memories program now has a new time and date: the first Wednesday of each month from 10:30-12:00. 

        

 

 

As guests enter the lower level of the Plaza Library, they breathe in the enticing aroma of fresh popcorn. Soon, they are settled in comfortable chairs and munching on popcorn and cookies, while being serenaded.  They sing along with Richelle Basgall, who engages them with fiddle, guitar, kazoo, and more. They tap their feet and clap their hands, belting out favorite folk songs and old standards, such as  Ol’ Suzanna, Que Sera Sera,  and I’ve Been Working on the Railroad.

Then the lights lower and everyone watches intently as a young boy and his red balloon form a deep bond, and stick together, despite many obstacles.  People were still talking about the movie as they and their balloons trail down the hallway, heading towards home.

Get a taste of The Red Balloon movie event by clicking here. 

 

Many thanks to our wonderful volunteers, including Sharon, Julie, and Pam. And special thanks to Sharon and Elizabeth from Stonecrest for bringing delicious snacks for us.

Our next movie experience is on July 3rd. Please join us for Room on the Broom, and other short films, a celebration of diversity.  You’ll love the songs from Robert Gibby Brand, our featured musician. 

Click to view informative and inspiring short videos on our YouTube channel

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.

CITLOD very smallLove in the Land of Dementia_cover

 

 

Talking about Dementia with Teens

We were delighted to spend time with the bright and curious sixth and seventh graders in Mary Silwance’s class at KC Academy. They had read the young adult novel Hour of the Bees, which features a poignant relationship between a pre-teen girl and her grandfather who is living with dementia, and they wanted to learn more. During our short time together, talking about dementia with teens, we discussed:

  • How it might feel for people who are living with dementia
  • Stigma and stereotypes
  • Creativity and dementia
  • Becoming an advocate

Here are a few excerpts from our lively conversation: 

How many of you have ever misplaced something? How did you feel when you couldn’t find it?

How many of you have ever forgotten what you were going to say? 

Have any of you ever overslept, woken up in a panic, and not known what day it was?

Those kinds of issues happen to most of us, at least occasionally. 

But imagine how you would feel if they started happening all the time. You kept misplacing your cell phone, your homework, your library books. You couldn’t remember your address or your teacher’s name.  What if you raised your hand to answer a question at school and the words you were going to say just disappeared. Or they came out all jumbled up? What if it happened so often that you started to worry about talking and became more and more quiet?

These are a few of the things that people who are living with dementia have to cope with.

With most illnesses, people cluster around and want to help you. But some people with memory loss actually lose their friends. We know dementia is not contagious, so why would people shy away?

People are scared when their friends and family members start changing. They’re worried they won’t know what to say or how to communicate. They’re worried about making a mistake. But the only mistake is abandoning a person you care about.

Lots of people are working together to make life better for those who are living with dementia. And some are those are people who are living with dementia. They say, “Nothing about us without us,” which means, “Don’t make plans about our lives without consulting us.” 

How you can be an advocate

  • Watch your language. Don’t use the words victim or sufferer with Alzheimer’s or dementia. These are strong and courageous people dealing with a brain disease.  
  • Look for opportunities to spend time with people who are living with dementia.
  • Don’t worry if you don’t know what to say. Look at the person. If they’re in a wheelchair or chair, bend or kneel so you can have eye contact. 
  • Try to find a quiet place to talk and listen. Some people are overwhelmed by too much noise.
  • Remember to slow down because some people need extra time to answer questions.
  • Seek ways to connect through arts and imagination, including music, drawing, cooking, gardening, and flower arranging.

Click here to experience part of the conversation 

Click to view informative and inspiring short videos on our YouTube channel

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.

CITLOD very smallLove in the Land of Dementia_cover

Creating a Dementia Friendly Kansas City

Luck. Kismet. The stars aligning. Those are all valid descriptions of our April 5th event, Creating a Dementia Kansas City.

First, we were lucky to have two great speakers: Emily Kearns, PhD, formerly of Dementia Friendly Massachusetts and Michelle Niedens, from the University of Kansas Alzheimer’s Disease Center.

Then, a lovely splash of kismet  when Emily and April Roy, Director of the Plaza Library, were invited to join Gina Kaufmann on KCUR’s Central Standard.

Thanks to Central Standard and lots of grass roots marketing, almost 100 people attended from many different sectors. Our attendees included representatives from The Alzheimer’s Association, The Nelson-Atkins Museum of Art, The Kansas City Symphony, The Renaissance Festival, KC Actors Theatre, The Naka-Kon Anime Convention, the Mayor’s office of Culture and Creative Services, as well as the medical and healthcare communities, senior services providers, the library community, first responders, faith communities, social work consortiums, people who are living with dementia and their friends and care partners, community volunteers, and more.

Our vision was beautifully articulated by our two speakers: “We envision Kansas City as a community where every citizen feels welcomed, valued, and engaged.”

We’ve only just begun and we welcome your support. 

 

 

Click on this link to enjoy a brief sampling of our Dementia Friendly Kansas City official launch

Click here to preview some inspiring action steps

Click to view informative and inspiring short videos on our YouTube channel

Please consider joining us for our follow through Lunch and Learns.

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.

CITLOD very small

Love in the Land of Dementia_cover

 

Creating a Dementia Friendly Kansas City: Join us and make a difference.

 

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.

CITLOD very small

Love in the Land of Dementia_cover

Art Invites Conversation

Teri Miller, with the Alzheimer’s Association Houston & Southeast Texas Chapter, has witnessed the power of how art invites conversation. As the Early Stage Program Manager, Teri collaborates with a variety of Houston’s arts and civic organizations. 

“Going to cultural activities offers people a sense of normalcy and gives them a date to put on their calendars,” Teri says.  “When they go with friends or care partners, they have an experience to discuss. Even people who say, ‘Oh, I don’t care for museums,’ usually have a great time.”

Sam is an example of someone who was surprised to enjoy the art gallery.

He attended one of Teri’s early stage support groups. His wife, who cared for him at home, went to the care partner’s group. Teri formed a partnership with the Houston Museum of Fine Arts and invited her early stage group to experience a tour. When he heard the invitation, Sam rolled his eyes and said, “I’ve never been to a museum and I’m not about to start now.” 

But the next week, Sam signed up for the tour. 

“What made you change your mind?” Teri asked.

“My wife really wanted to go. She does so much for me, I figured I’d do something for her.”

Teri expected Sam to sit back silently, arms folded over his chest, as the docent asked, “What does this painting make you think of?  Has anyone ever been in a similar setting?”  But to Teri’s surprise, Sam had opinions on each of the three pieces they discussed. 

Sam told Teri, “At first, I didn’t want to go because I was worried I wouldn’t have anything meaningful to contribute.  But I guess you don’t have to know anything about art to enjoy the museum.”

He and his wife talked about the experience all the way home.  Discussing the paintings opened up chances to reminisce and connect. Plus the experience gave them something interesting to share with their grown children and visiting neighbors. 

Like many art partnerships around the country, Teri was inspired by MOMA’s Meet Me art program for people living with dementia. The Houston museum benefitted from MOMA coming to train their docents. The program offers comprehensive guidelines for visiting a museum or viewing art at home.  

Creative Sparks:

Many art galleries and museums offer special tours and events for people living with dementia.  If you’re lucky enough to have such a tour available, take advantage of it. 

To design your own museum tour:

  • Think of a museum your partner likes. If feasible, buy postcards of some of their art or visit their on-line gallery together and ask your partner which pieces he prefers. That way, you can tailor the visit to his taste. 
  • Choose one or two rooms that feature his preferred art. Make sure one room has a place to sit.
  • Use the paintings and sculptures as a catalyst for conversation. Ask open-ended questions, discussing the colors, people, and objects you both notice. 
  • If the museum has a restaurant or tearoom, treat yourselves to something delicious. 
  • Enjoy the sense of connection that comes from discussing art; there are no right or wrong answers, just interesting observations.
  • To fashion a viewing experience at home: 
  • Select art books from the library or use your own personal collection. 
  • Choose works that portray emotion, tell a story or align with your partner’s background or interests.
  • Ask open-ended questions that invite conversation, such as, “What does this make you think of?” and “What do you notice in this picture?” Have fun imagining what the people in the painting are thinking. Imagine their professions and whether they’re happy. 

This is an excerpt from Connecting in the Land of Dementia: Creative Activities to Explore Together. Deborah also wrote Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.

CITLOD very small

Love in the Land of Dementia_cover

Santa and the Symphony Visit the KC Memory Cafe

 

At our December Memory Cafe, Santa had an amazing pre-show- warm-up band: a trio from the Kansas City Symphony. Their renditions of familiar holiday tunes were musical works of art, filled with melodic flourishes and surprises.  Our guests listened avidly. When Stephanie Brimhall, the Symphony’s Education Manager, led us in a singalong, everyone raised their voices and sang with heart and gusto. As our attendees finished decorating Christmas cookies with colorful icings, bright sprinkles, and little chunks of peppermint, we heard a jingling of bells and a booming, “Ho Ho Ho.” Santa had arrived, with a sack of treats. 

“How many of you have been good?” Santa asked and most of us raised our hands.  Santa made the rounds, passing out sweet treats, courtesy of Russell Stover Chocolates, and wishing everyone a merry holiday. Then he settled into a comfortable chair beside the backdrop of a scenic hearth. We all lined up to sit beside him and have our photos taken with the Great Claus.  Santa warmly welcomed each person and everyone was just thrilled to be near him — and even more thrilled when Jennifer Walker’s remarkable little printer produced a wonderful photographic memento of the event.    

At the end,  Santa summed up the holiday spirit by sharing this message: “Peace for the world and good will for all people.”  

          We hope we can all continue this spirit of hope, sharing, and generosity throughout the new year.

Capture the cafe spirit for yourself by clicking on this short video:

                     

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.

CITLOD very small

Love in the Land of Dementia_cover

An Old-Fashioned Holiday

This old-fashioned holiday story from Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey celebrates the spiritual aspects of living with dementia.

When I walk through the doors of the nursing home, I find my mother in her wheelchair, right in front of the medication cart, right behind the central nursing station, where nurses, delivery people, staff and family members congregate. Mom is bent over, her baby doll lying across her lap. When I walk up to her, I ratchet up my energy and widen my smile. I am preparing to clown her into a reaction.

Later my father will ask if I think she recognized me.

“No,” I will have to tell him. “She did not recognize me. But she did smile.”

The smile is important.

My hand waving and head bobbing does its work: Mom does smile, and I can tell she is in her own current version of a good mood.

“Music in the dining room,” the activity board reads, so I wheel her in that direction. An elderly man with a red and white trimmed Santa hat passes us in the hallway.

 

“Look Mom, there’s Santa,” I tell her.

Having been brought up Jewish, Mom never was all that enthralled with the Claus mythology and she has not changed.

A white-haired woman is in the dining room, busily setting up for the music program. Several patients are already gathered. The woman takes out a microphone, a boom box, an illuminated plastic snowman, and a small silver bell. I continue wheeling Mom down the far corridor, liking the sense of companionship I have from this movement.

As we stroll, a nurse carrying a plate of lettuce walks past us.

“She must have been a good mother,” she says, nodding at the way Mom is holding the baby. “She must still be a good mother.”

“She is,” I say.

I have never really said to my mom, “You were a good mother.”

Now I realize she was.

I can see that Mom is enjoying the ride. She loved movement when she was younger and was far more adventuresome than Dad when it came to airplanes, ski lifts, fast cars, and speedy boats. For her, biting breeze across the face was thrilling, not threatening. Until she became a mother, that is. Then she abandoned her pleasure in the heights and speed and concentrated on making sure we were slow, safe, and centered.

We roll back into the 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 from the memory care into the skilled care portion of the nursing home.

“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 smeared with butter and sprinkled with sugar and baked. 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 songs. She did not willingly go to Christmas parties. She let the holiday rush by her, like a large train, whooshing past, ruffling her hair and leaving her behind.

Now, I am singing Christmas carols to my Mom for the first time. She is smiling, though really not at me. But I am sitting beside her while she is smiling and that makes me happy. 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, nudging her, shaking a bell almost in her face, 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 nose, Mom laughs. For several minutes, Mom stays fixated on the scarlet nose, her face a miracle in pure enjoyment. I laugh too, so delighted to see Mom engaged and absorbed. Then, Thelda dances away and Mom’s face glazes back over.

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.

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.

CITLOD very small

Love in the Land of Dementia_cover

Eight Steps to Help People Living with Dementia Feel at Ease during Holiday Gatherings

As we move into the holiday season, Ron and I think often of our parents who went through their last holidays with dementia: my mom Frances and his father Frank. We wanted to share the season with them in ways that felt safe, comfortable, and honoring so we gradually developed these tips. Recently, we shared the tips via email and had such a great response we also want to share them with you.

Several people wrote, “These ideas are good for anyone, not just those with memory loss.”

 

What great wisdom–to treat each person with the tenderness and consideration that we often reserve for someone going through a physical or emotional illness.

We’d like to share our tips and we’d like to learn from you: what other suggestions do you have for helping people feel connected at gatherings?

Eight Steps to Help People Living with Dementia Feel at Ease during Holiday Gatherings

  • When you’re in a group, help the person living with dementia feel safe and comfortable by having a trusted friend or family member stay beside him or her, explaining the proceedings and fielding questions from others, as needed.
  •         Encourage people to say their name and maintain eye contact when conversing with the person who is living with dementia.
  •         Make sure the person can come and go from the group as needed. Create a quiet space where he or she can rest — or appoint a caring person to drive your loved one home when he tires of the festivities.
  •         Have something special for them to look at, like a family photo album or a favorite magazine.
  •         Choose background music that is familiar to them, music of their era played in a style they resonate with.
  •         Prepare a few of their favorite foods.
  •         When talking to them, don’t correct or contradict or try to pull them into the current reality. Simply listen carefully and let them talk.
  •         Appreciate them for who they are right now.

Here’s to a holiday season filled with grace, gratitude and generosity.

CITLOD very smallLove in the Land of Dementia_cover

Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.