Presenting to Care Partners in St. Thomas

Listening to favorite songs. Singing. Conducting an imaginary orchestra. Looking at art. Cooking and baking. Laughing. These are just a few of the topics we discussed when presenting to care partners in St. Thomas.  

Recently we gathered with professional and family care partners, along with friends and advocates, to share ideas for staying connected through the dementia and care partners’ journey.

Everyone lit up as we all thought of favorite songs that carried positive memories. These “personal playlist” songs are the foundation of the internationally acclaimed Music & Memory program (https://musicandmemory.org) developed by Dan Cohen and beautifully documented in the movie Alive Inside. As we moved on to singing, one woman described how her mother still knew all the words to her favorite hymns. Another attendee, who had a daughter with special needs, described how singing allowed her daughter to find and keep her voice. Maestro David Dworkin would have relished the zest with which our group practiced his dynamic Conductorcize program. We sang the melody to When the Saints Come Marching In, and conducted away, raising our arms, our voices, and almost, the roof.

“What about cooking and baking?” one woman asked. “How can my mother continue her passion for those when she can no longer use the stove?” 

Ron and I both identified with that question, as our moms had been avid bakers. We talked about a variety of ways to stay safely engaged in creating food, including setting up a quiet table just outside the kitchen for making dishes together. We discussed the joys of measuring, blending, chopping, and stirring, while carrying on a companionable conversation. Making fruit and vegetable salads, snapping green beans, icing cupcakes, making cookies serve as a few delicious examples. There are so many ways we can adapt hobbies and add in creativity and the arts so all of us can live with meaning and purpose.  ###

Many thanks to Arleen Evans O’Reilly, Sandra Bradley, and their team for hosting us.                               And thanks to Sandra Bradley for taking the photos.

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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Seven Secrets of Dementia Inclusive Holiday Cooking

 “Who prepared this delicious meal?” a friend asked during a holiday dinner.

I named my brother Dan, our head chef, first. Then I included the support team—myself, my mom, my daughters and nephews.

“Did I help?” Mom whispered as I passed her the mashed potatoes.

“You sure did,” I told her. ”You mashed the potatoes, put the marshmallows on the sweet potato casserole, and mixed the fruit salad.”

“That’s good,” she said. “I like to help.”

Our desire to help and contribute to seasonal celebrations doesn’t end with a diagnosis of dementia. It’s lovely to linger in the kitchen together, preparing food for the holidays. It’s even lovelier when you can adapt and enjoy dementia inclusive holiday cooking so that people of varying abilities can participate.

Rebecca Katz, author of The Healthy Mind Cookbook, sees food as a great equalizer, something anyone can enjoy regardless of abilities. Fixing a delicacy for someone offers a tangible and delicious way to give back.

Here are six secrets of dementia Inclusive holiday cooking.

  • Leaf through a favorite family cookbook or recipe box and use the pictures and recipes as a catalyst for conversation. Ask open-ended questions, such as, ”What does that brownie recipe make you think of?” “What do you like about the holiday season?”
  • Chose a time of day when you’re both rested.
  • Create a comfortable kitchen environment, by playing familiar seasonal songs you can both hum or sing along to.
  • Reduce extraneous noise and distractions, such as a television in the background.
  • If you wish, take photos during the experience. That way, you can relive the adventure and share with family and friends.
  • Indulge in instant gratification, if possible, by sampling your work when the cooking is complete.
  • Even if the person living with dementia can’t help prepare food, he can still enjoy sitting in on the action and the conversation.

Whether you’re stirring a pot of orzo or dropping mint leaves into cool water, enjoy your time of creation and connection in the kitchen.

A longer version of this piece originally appeared on Joan Lunden’s excellent website:      Enjoy Dementia Inclusive Holiday Cooking.  Thanks to Sue Fitzsimmons, MS, ARNP, Judith Fertig, author of The Memory of Lemon, Kate Pierce, LMSW, Alzheimer’s Association Greater Michigan Chapter, and Rebecca Katz, author of The Healthy Mind Cookbook

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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Rock Around the Library: Celebrating a Year of KC Memory Cafes

No one can sit still. Not when Little Richard, The Archies, or Dion are singing. It’s a Rock Around the Library: Celebrating a Year of the KC Memory Cafes. We are one-year-old this March and we’re celebrating with Musical Bingo by Carrieoke Productions. We’ve enjoyed ice cream and cake and we’re ready to roll, rock and roll, that is.

At the first note, one of our guest says, “Sugar, Sugar.” She’s right and a small group of us sings the literally saccharine lyrics, “Sugar, ahh honey, honey, you are my candy girl…”

Within moments, all the care partners are dancing. We’re all helping each other find the songs on our Bingo sheets. We’re singing along when we know the lyrics and humming along when we don’t.  We’re laughing. 

When Carrie plays the Beach Boys’ tune, I Get Around, one guest says, “I wish I could get around.” Another chimes in, “Me too!”

For an hour, we Twist and Shout, warble Do You Want to Dance?, warn our neighbors not to “step on my Blue Suede Shoes,” and shake our heads over Run Around Sue. Those who win at musical bingo, and there are many of them, get to select a prize.

“It’s wonderful to see people blooming,” one care professional says.

And it’s equally wonderful to see the caregivers laughing, joking, dancing, encouraging, sharing, and helping us create This Magic Moment.                                                    

 Click here to join the party:  

Don’t miss our Magic Moment in April. The Kansas City Zoo is bringing some exotic and personable animals on April 16th. 

Please join us at 10:30 on the lower level of the Plaza Library. Come early. Please share this information with anyone who might benefit.

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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Pick the Best Care Community for Your Loved One

My hands were sweating as Mom, Dad, and I entered the memory care unit. We desperately wanted to pick the best care community for my mother. Pam, the head nurse, rushed towards us, arms outstretched. 

“So good to see you again,” she told my father and me. She turned to Mom. “And you must be Frances. Paul has told me so much about you. I hear you’re a nurse too.”

She took Mom’s arm and they walked together down the corridor, talking. We followed and Pam stopped at a small dining area, where coffee and cookies, chocolate chip, one of Mom’s favorites, awaited us. Dad and I looked at each other and smiled. Maybe, just maybe, this was going to be all right. 

We had already visited several homes and none of them seemed warm enough, caring enough, or quiet enough for Mom. What had won us over was Pam and her feeling for people who were living with memory loss, her determination to create community, her compassionate and easy way of communicating. 

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One of the most challenging experiences caregivers can face is finding the right community when your loved one needs care. Jytte Lokvig, PhD, regularly consults with families on this issue. Her new book, Moving & More, offers families concrete guidelines for finding the facility that meets their needs.

Click here to see our interview with Jytte Lokvig

When visiting a care community, Jytte suggests that we ignore the lobby and the landscaping. A beautiful lobby soothes the family’s soul but has little to do with the quality of care and engagement offered. Spend at least a couple of hours in memory care.

“Remember,” she says, “you are asking your loved one to live here. Stay on after your tour and blend into the scenery, so you can really get a sense of how staff and residents interact.”

Here’s what you want to learn:

  • Does the facility practice “Person centered-care?
  • Do residents participate in menu and activity choices?
  • What is the staff/resident ratio?
  • What are the staff retention rates?
  • Do all staff receive mandatory first aid and dementia training?
  • Are the family, nurse, personal care and activity staff involved in creating the resident’s care plans?
  • Does the activities calendar offer a blend of entertainment and interaction? 
  • Are there both individual, small group, and large group activities?
  • Does the staff acknowledge each resident, even with a simple greeting or compliment?

After you have a sense of the community, take your loved one to visit. Have a meal with the residents. Stay for an activity program. 

“Several visits like this helps both of you feel more comfortable when the move comes,” Jytte says.

For more tips and information, visit Jytte’s site at http://www.alzheimersatoz.com and consider her book:  Moving and More.

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

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Connected in the Land of Dementia: Easy Ideas and Free Events

The more research we read, the more people who are living with dementia we listen to, the more care partners we consult, the more we understand the power of keeping engaged, inspired, and connected in the land of dementia.
Along with Jennifer Walker, RN, BSN, Clinical Community Liaison from Kansas City Hospice, we’ll be sharing ideas for staying connected on Wednesday June 27, at 6:00 at Santa Marta.
If you’re interested, please join us for this free event.  We’re also including information on two free dementia-friendly gatherings happening in June in KC.
 
Deborah Shouse is the author of Connecting in the Land of Dementia: Creative Activities to Explore Together and Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.

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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 Winning Combination: Children, Exercise, and Music

An orderly group of five-year-olds walk into the dining room at Vernon Manor in Viroqua, Wisconsin.  The residents are waiting for them. Each child goes up to an elder and introduces him or her self.  Then Ingrid Constalie, AD-BC, CDP, Board Certified Activity Director and Certified Dementia Practitioner, talks to the assemblage about the importance of staying fit. The residents nod sagely: many of them are in their eighties and nineties and they exercise every day. But the days that the kindergartners join them are the best, a winning combination or children, exercise, and music.

The residents love teaching the kids the alphabetic movements to the iconic YMCA song. And the kids are a burst of giggles and wiggles as they fold their arms into wings, strut around, and teach everyone The Chicken Dance.

Ingrid’s focus is creating moments of joy, engagement, and connection.

Her intergenerational activities spark the residents and reduce the stigmas of aging and dementia by educating and informing local children, teens, their teachers, and other members of the community.

“This dancing and exercise exchange is simple, energizing, and very successful,” Ingrid says.

Sing-O at Bingo

Music Bingo offers middle schoolers a chance to work with Ingrid’s elders.

“This is about creating a good experience for your partners,” Ingrid coaches the children in advance. “You are their connection to the world.”

Ingrid plays an opening melody, using songs such as “Happy Trails,” “You Are My Sunshine,” and “Singing In the Rain.”  Those who know the title shout it out. Often, partners confer with each other. The children help locate the song title on the bingo card and place a poker chip on each answer.  Even people living with advanced dementia enjoy listening to music and being around the children.

Most of the time, the school children are chatty and at ease. But one girl was scared coming into the care community.

“I paired her with Helen, a woman deep into dementia,” Ingrid says. “Within minute, Helen had her arm around the girl and they were both laughing.”

Even children who act up at school are wonderfully behaved during the Bingo experience.

Creating Comparisons and Compassion

Recently, Ingrid orchestrated a project with a high school English class. They interviewed residents and did a comparison and a contrast. For example: “While Clara is getting out of bed with the assistance of staff, I am getting ready for school. While she wheels herself down a long hallway to a dining room, I am eating toast with my sister.”

The teenage journalists asked simple questions, like “What is your morning like?” “How do you spend your afternoon?” “How do you like to dress?”

The students wrote up the results and made booklets. One family was so inspired by the insights in the booklet, they later read parts of it at the woman’s funeral.

Ingrid’s intergenerational connections explore understanding, create empathy, and help create exciting new relationships.

 

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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