Orchestrating a Musical Conversation

When Ron’s dad was living in a memory care unit, Ron and I talked with the residents and their families, learning about their favorite songs. We orchestrated a sing-along and had fun working with everyone and putting together a scrapbook of each resident’s special tunes. The combination of music and conversation created a sense of community for us all. Julian West, who we met on a recent trip to London, is creating community through engaging people in music and dance. We really love the way he weaves the two art forms  together and wanted to share his easy and adaptable ideas with you.

Julian West had no idea what would happen at the care facility, but he trusted it would be something wonderful. An accomplished oboist and a teacher at the Royal Academy of Music, Julian assembled a violist, a composer, a dancer, and an artist to share energy and their art with people who are living with dementia.

“This was an experiment to see what could happen,” Julian says. “We worked completely improvisationally.”

Once a week, for eight weeks, the troupe came to the residential care home and created a living arts experience with residents and staff. They began by inviting everyone to choose a percussion instrument, such as rain sticks, bells, shakers, tambourine, etc.

“We had a musical conversation,” Julian says. “One person made a sound and another answered. We also chatted a lot. People commented on the music or expressed an emotion or impression.”

The musicians added their instruments and the staff and residents joined in, through percussion and voice.  They made fascinating sounds, like an improv jazz singer might do. The dancer twirled around in the center of their circle. Her free movements gave the group a focal point and inspired others to explore various movements.

“I let go of preconceptions and tried to create an open atmosphere,” Julian says.

The artists’ openness helped the “conversation” grow and blossom.

One woman who was living with dementia held up a tambourine, keeping it still and gazing at it as though it were a beautiful and revered object.

Julian’s first thought was, “She doesn’t know it’s a musical instrument”.

“I let that thought go,” he says. “I saw how expressive she was. Her interaction with the tambourine was beautiful and profound and she allowed us all to see the instrument differently.”

Even if you don’t have your own musicians and dancers at home, you can still create this supportive and creative atmosphere.

• Share a few percussion instruments, put on some music you both like, and make some joyful noises. Experiment with bee-bop syllables to add a sense of freedom.
• After the song, talk about the experience, what you liked, what you felt, and any other impressions that came up.
• Consider inviting a “guest dancer,” someone who likes to move to music, or a child of a friend who’s taking dancing lessons. Go ahead and add your own moves.
• Invite friends and family to join you. You’ll have something to laugh, and sing, and talk about.

For more information about Julian’s work, visit: www.julianwest.co.uk

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

COMING SOON: Connecting in the Land of Dementia: Creative Activities to Explore Together 

Advertisement

Fulfilling the Bucket List, Trip by Trip

Our friends Elizabeth and Charlie Miller are a constant source of inspiration. Here is one of the many ways they embrace life.

Elizabeth and Charlie knew they had to instantly work on their travel bucket list. When they met and fell in love, Charlie had been living with dementia for four years. He had not traveled much, but he wanted to see the world with Elizabeth. He asked a friend to help him plan a romantic trip to San Francisco, where he proposed to her.

After she said, “Yes,” they combined their love of beaches and nature and began adventuring, going on driving trips, taking cruises, and sharing a multitude of experiences. When flying grew too complicated and stressful for Charlie, they focused on local day trips or short driving trips.

“I used to have to travel alone,” Elizabeth says. “Now, I travel with Charlie. He enjoys the trip in-the-moment. How wonderful to have all these shared experiences. Plus, it’s renewing to be outside of our routine.”

Recently, Elizabeth and Charlie were driving around and Charlie said, “What was that long cruise last fall that had so many beautiful places?”

Elizabeth stopped to think. “Hawaii,” she said.

“Hawaii,” Charlie said, his eyes bright. “Wasn’t that the best cruise ever?”

Elizabeth smiled and felt a deep sense of happiness and connection. “You are right. It was the best cruise ever.”

To make every trip “the best” here are a few flying travel tips from Elizabeth:

• Try for a non-stop flight at a time best for the person living with dementia.
• Call TSA in advance and arrange for assistance in getting through screening.
• Ask for a Pre-boarding pass to minimize the stress in boarding.
• Get a business-type card that says, “Thank you for your patience with my companion. He is living with dementia.” Share this information, as needed.
• Carry a travel packet that includes a letter from an MD, stating that your companion has dementia, and a medical power of attorney.  Include doctors’ names and contact information as well as emergency contact information.
• Carry a bag of essentials: water, snacks, medications, a change of clothing, and activities.
• Be flexible, in the flow, and have fun!

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

COMING SOON: Connecting in the Land of Dementia: Creative Activities to Explore Together 

Three Marvels of Misplacing

“These days I am constantly losing things,” a friend tells me. I understand, because I frequently misplace  objects and even words!

As I was worrying over this issue, which seems to plague so many people I know, I came across this piece I wrote several years ago. It reminded me to “seek” the creativity and joy hidden in every situation.  

Is it possible to have ten pairs of reading glasses and lose them all in the same afternoon?

“I don’t know where my glasses are,” Mom tells me. I bite my lip; she’s been misplacing things all day. We are supposed to be spending a day drawing and painting, trying to connect mom with the artist she used to be. We are supposed to bake cookies together and look through magazines. But I’ve been spending much of the time crawling around, looking under the sofa and chairs and between the cushions for the disappearing glasses.

“Let’s make our cookies. You won’t need your glasses for that,” I say.

“I need my glasses.”

           As I search, I wonder when it became a drudgery instead of a joy to find things. One of my favorite childhood games was Hide ‘N Seek. I loved being the Seeker, loved the surprise of finding someone in a tucked away, mysterious place. I had a special trick I used when I was “It.” I would close my eyes and say, “If I were Dan, where would I hide?” Then an image floated into my mind and I’d race to the hiding place. Half the time, I was right.

Do I still have “it?” I close my eyes and think, “If I were Mom’s glasses, where would I be?” The refrigerator comes to my mind. I rush into the kitchen and fling open the refrigerator door, only to see the usual chaos. But I’m hungry, so I reach for an apple. Behind the fruit is a pair of reading glasses, sprawled across the shelf.

Triumphantly, I take the glasses to Mom.

“These feel nice,” she says.

Not only has my mother reminded me of the importance of creativity, curiosity and play, but she also discovered a great summer time tip: chill your glasses and cool off your face.   

Dementia Café: Connecting through Donuts and Baseball

 

I’ve always enjoyed gatherings of creative people, so I was excited when I learned that Mandy Shoemaker was orchestrating a Dementia Café in our area. The premise is simple and fun: a group of people living with dementia, their care partners, and friends get together in a public space for a facilitated time of conversation, sharing, and creativity.

Mandy’s café took place in Lamar’s, a locally esteemed donut shop with a quiet atmosphere and a spacious seating area.  Eight of us gathered around a table and Mandy opened the conversation by showing us a black and white photo of a baseball player laying on a field, next to a fence, apparently knocked out.

“Babe Ruth,” she told us. “He was running backwards to catch a ball and crashed into the barrier.”

We all nodded in sympathy, then began sharing baseball stories. Charlie had played in his youth and he and his wife Barb were ardent Royals fans. Courtney had played softball in high school. Fran, who grew up in the 1930’s in rural Mississippi, never had a chance to play sports but she liked hearing about the game.

“Did you ever listen to baseball on the radio?” Mandy asked her.

“In those days, not everyone had everything,” Fran said. “I don’t think we even had a radio.”

Barb remembered being on her grandparent’s farm, huddled around the radio, listening to the Yankee’s games.

“Have you ever heard the poem Casey at the Bat?” Mandy asked.

“I memorized it at school,” Charlie said.

We took turns reading the dramatic poem, discussing such vivid terms as “when the dust had lifted” and  “Casey lightly doffed his hat,” and one ball player was a “lulu” while another was “a cake.” The tension built and we chanted the last verse together. (Seek out this poem if you want to know what happened in Mudville that day: www.baseball-almanac.com/poetry/po_case.shtml )

We then created a group poem, each contributing an answer to “Baseball is…”

I left the café feeling exhilarated and connected. Baseball was a catalyst for a great conversation that included life in the 1930s, family origins, Memphis, Elvis, baseball cards, Abbott and Costello, poetry, women and sports, fathers, hard work, radio programs, and more.

“It is our goal to create a more dementia-friendly community,” Mandy says. “Part of that is creating safe places for people with dementia to come and be a part of a group, with no expectations.  The café invites people to just get out, be creative, and have fun.”

The KC Memory Café will meet on the second Tuesday of each month. To keep up to date, follow our facebook page at www.facebook.com/KCMemoryCafe

Create Your Own Cafe

You can also create your own café for two or more. Here are a few tips:

Select a public meeting place that serves refreshments and is reasonably quiet.

Let go of expectations and create a supportive atmosphere. You are here to express yourselves and connect.

Pick a broad topic that you are both interested in. Examples include seasons, sports, nature, games.

Start with a visual stimulation, such as a photo. Ask open-ended questions that invite imagination, such as “What do you see in this picture?” or “What do you think is going on?”

Allow the conversation to flow. The topic is a mere catalyst for ideas and communication.

Print out a familiar poem to read together. Enjoy the drama of reading aloud and invite comments on the poem.

For more about starting a café, visit

http://www.alzheimerscafe.com/public.html.alzheimersatoz.com/Welcome.html

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

COMING SOON: CONNECTING IN THE LAND OF DEMENTIA: CREATIVE ACTIVITIES TO EXPLORE TOGETHER

 

Three Tips for Celebrating Mother’s Day When your Mom Has Dementia

“I don’t know what to do about Mother’s Day,” a friend recently told me. “I used to celebrate with my mother, but Mom doesn’t really recognize me now and the holiday won’t mean anything to her.”

My friend was not alone in her dilemma: according to the Shriver Report,  ten million women either have Alzheimer’s or are caring for someone with it.

I’d faced the same issue with my mom as she sank into Alzheimer’s. But I’d decided that celebrating Mother’s Day was important for me and for my family, even if Mom didn’t truly understand what was going on.

Here are three tips I devised for reducing the sadness this holiday can trigger and for substituting a celebration of renewal and connection.

Feel Your Frustration and Grief

The happy-family-candy-and-flowers Mother’s Day television commercials seemed to shout at me: “Your mother is no longer who she used to be!” That was true and a spike of sorrow stabbed at me as I mourned my “normal mom.”

Celebration: Talk about your feelings with empathetic friends; feel your grief and the frustration. Explore ways to express yourself, perhaps through journaling, collaging, stomping about. Or cocoon and immerse yourself in mournful movies and music.

Activate Your Appreciations

My mother could not complete a sensible sentence, cook a simple meal or dress herself. She did not know my name or remember any of my accomplishments or stellar qualities.

Celebration: Notice and appreciate the good in your situation. Even though Mom didn’t remember my name, she also didn’t remember any of my shortcomings. She was no longer critical of my parenting skills and no longer shy to show affection. She had a dazzling smile, a whimsical giggle and an ability to look into my eyes. She was content with who I was, whoever I was. These were qualities to celebrate.

 Celebrate Yourself and Your New Relationship

Since my mom could not care for herself, I learned to care for her. Our lives wove together and we became deeply connected, as I emerged from being just a daughter to becoming an advocate, spokeswoman and historian for my mother.

Celebration: On Mother’s Day, I stopped to celebrate myself, my flexibility, my sense of humor, my steadfast feelings of responsibility. I gave myself the gift of time and appreciation.

7 Ways to Concoct a Creative Celebration

Share favorite memories

Tell her favorite life stories

List her opinions, maxims and worries

Sing along to favorite family music

Muse over family photos

Serve up easy comfort foods

Share what you’ve learned from your journey with her

Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.                                                                                                                                                                                         COMING SOON: CONNECTING IN THE LAND OF DEMENTIA: CREATIVE ACTIVITIES TO EXPLORE TOGETHER