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Care Partnering

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.

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Animal Magnetism: The Zoo Cafe Attracts Almost 100 People!

The April 16th KC Memory Cafe started out quietly. People came in, silent, perhaps feeling a little confused or weary. After they sat down at comfortable tables and were served comforting snacks, the conversations increased. People enjoyed their oranges, animal crackers, and drinks. And then the dynamic duo from the Kansas City Zoo brought out the first attraction and the crowd got really engaged in the black and bright blue tree frog from South America. They peered through the glass container at the amphibian, tapped the glass to get his attention, and asked questions. The animal magnetism was working. 

With the introduction of the African Pygmy Hedgehog, the guests became even more animated. The hedge hog was undeniably adorable and everyone wanted a good look. “Where is he from?” “What does he eat?” “Will he bite?” people asked. And “Can I have another look at him?” 

When the parrot emerged from its covered cage, everyone grinned and clapped. The bird wowed the crowd by saying, “Hello,” clear as could be. When one of the educators passed around brilliantly colored feathers the parrot had shed, people avidly admired them.

The energy was buzzing as people left, buoyed by learning about these new animals and excited by the outing. 

“I will be back,” one woman promised.

“This was so well done,” a staff member told us.

“I loved the parrot,” another woman said.

What we all loved most was seeing our guests blossom and talk and come to life by experiencing such an interactive and engaging program. Many thanks to the Kansas City Zoo for sharing these remarkable educators and animals with us. And many thanks to our guests for attending. We hope to see you all at a future cafes.

Click here and enjoy watching the animal magnetism

Want to experience some animal magnetism at home?

If you have a pet, share the responsibilities of caring for it. Taking care of an animal offers a sense of purpose and invites out our nurturing spirits.

If you don’t have your own pet, invite a well behaved pet to visit. Select an animal you all like, ideally one you can pet and hold, such as a dog, cat, or bunny.  

Consider adding a spill-proof aquarium, featuring brightly colored fish. Watching the fish glide by can be soothing. 

Look for other opportunities to hold or connect with animals.

Come join us for our next Cafe:

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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Quality Moments in the Land of Dementia: Laughing and Creativity in Jamaica 

Our hosts started the program with a beautiful hymn of gratitude, a perfect way to acknowledge the spiritual aspects of connecting and laughing in the land of dementia. We met in the Salvation Army Church and Community Centre in historic downtown Falmouth, Jamaica, with a group of caregivers and community advocates. During our time together, we shared stories, information, laughter exercises, and creative ideas for taking care of ourselves and staying engaged.

For many, this was an introduction to dementia. For others, who were in the midst of caregiving, this was a time of learning and sharing. 

Ron and I talked about the importance of accepting each other as we are, no matter what we are going through. We discussed the power of having a purpose and how vital it is for all of us to have meaningful relationships and interesting experiences. . 

”When communicating with people who are living with dementia, don’t argue,” Shirley Duncan reminded everyone. “Don’t criticize. Be there to support and appreciate.” 

“When we are kind to ourselves, then we are better able to be kind to others,” one of our attendees said.

We discussed Dr. Cameron Camp’s concept of cognitive ramps, offering people the assistance they need to remain engaged in the activities they love. Here’s one example from our session: Lorna’s mother was a professional cook, completely at home in the kitchen. As her dementia progressed, she could no longer remember the family’s favorite recipes. But she could sit in the kitchen and enjoy the energy of cooking. And when Lorna’s daughter said, “We are going to make your famous stew. Does it have an onion in it?”  the mother smiled and nodded. Ingredient by ingredient, they consulted her, and she smiled and nodded at the mention of the right ingredients. Even though she wasn’t physically creating the meal, she was an integral part of the process.

We talked about the power of music, sharing ideas from Dan Cohen’s Music and Memory program and introduced people to the personal playlist.  We had an impromptu Conductorcise session, using Maestro David Dworkin’s aerobic and ground-breaking program, pretending we were conducting a symphony orchestra. We used laughter syllables to make it even more fun and soon everyone was standing up and conducting and laughing.

We shared a story from Karen Stobbe, reminding us all to affirm and appreciate and to use the improv technique, “Yes and…” to ignite and invite conversation. 

Throughout our discussion, we wove in laughter exercises.

We enjoyed an imaginary laughter swim. We batted around laughter balloons and cooked up a laughter stew that included fish, pumpkin, garlic, carrots, Irish potatoes and okra. 

At the end, we breathed in our gratitudes, closed our eyes and sent our feelings of love, connection, and laughter into the world, hopefully to help and inspire others. 

Click here for a small taste of this lively workshop:

A special thanks for the dementia advocates and community volunteers who brought everything together, including Dundeen Ferguson, Shirley Duncan,  Sandra Latibeaudiere, Elise Thomas, and Lorna Colley. And thanks to everyone who attended.

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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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.

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KC Memory Cafe: The Goat and Pony Show

One of the stars of November’s KC Memory Cafe was a miniature horse. It’s not every day that a white horse and a couple of black goats visit the Plaza Library, accompanied by exotic bunnies and silky chickens. But these friendly animals, brought to us by the Paramount Petting Zoo, captivated all our attendees.

“These animals love to be held and petted,” their keepers told us. They instantly snuggled into people’s arms and were in no hurry to leave.  Our attendees were filled with a magical sense of connection and relaxation, mixed in with the thrill of meeting all these new animals. 

“Animals fill us with excitement, and give us something to talk about,” says Mandy Shoemaker, co-founder of Prairie Elder Care. Mandy’s organization is part of the esteemed Eden Alternative, a national movement dedicated to reducing loneliness, helplessness, and boredom through loving companionship and meaningful engagement. 

“Animals give us a connection,” she says. 

We could see and feel that connection as we all enjoyed feeding the goats, petting the horse, and cuddling with the bunnies and the chickens. We also shared farm memories and Mandy asked, “How many of you ever thought you’d be holding a chicken in your lap?”

For most, it was a unique experience, one they did not tire of. For some, parting with their loving chicken or bunny was like saying good-bye to a dear friend. 

To meet the animals, click here.

 

 

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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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.

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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.

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