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Posts Tagged ‘Alzheimer’s Caregiving’

Huzzah! RenFest Stars Present at KC Memory Cafe

A wizard, a peasant, a royal hat maker, and a royal candy maker walked into the Plaza Library. But they were not here to check out books on their respective trades: they were with several other RenFest stars, eager to present at the KC Memory Cafe. 

Mia Moore shared the inside story of getting into her complicated costume as the Renfest character of Molly William, Lady Steward of the Household. First, she slipped on a gauzy white under-blouse with an appealing ruff around the neck. Then, she created a luscious hour-glass shape by putting on a corset. In the olden days, the corsets were made with whale bones. But Mia was ecologically correct and chose industrial cables for hers. A wide brown skirt, made of upholstery materials, was next, followed by a lady’s doublet, with dozens of small fabric covered buttons. Getting all buttoned up took at least ten minutes, and she kept us quite entertained throughout the process. Her final adornment was a jaunty hat.

Click here to get the RenFest inside story.

“It wouldn’t be proper to go around with my hair uncovered. Plus, during the Renaissance, people didn’t bathe that often. Their hair might be dirty and lice-ridden, which the hat kindly covered,” she told us.

As each of the performers shared information about their characters, we could feel their passion for history and for this fascinating time period. 

The wizard assured us, he would never walk about London with his high pointed burlap hat and his quartz-topped staff; for that, he would have been locked up in a mental hospital. Instead, he would have lived in a rural setting and been considered an alchemist. The peasant told us, “The amount of cloth in a middle class woman’s skirt would be enough for me and my family for a year.”  

Cloth was quite valuable and all fabrics were recycled and passed down, mended and amended until they were nothing but scraps. 

How often does a person have a chance to touch an ostrich feather fan or stroke the soft pink velvet of the royal candy maker’s doublet? Our performers walked about the room, greeting individuals, sharing stories about their characters and clothing, and letting us examine their specially made costumes.

It was a glorious experience, rich with history, energy, and imagination.

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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The Beat Goes on at KC Memory Cafe

“Drumming ultimately has therapeutic value, providing the emotional and physical benefits collectively known as “drummer’s high,” an endorphin rush that can only be stimulated by playing music, not simply listening to it. …The endorphin-filled act of drumming increases positive emotions and leads people to work together in a more cooperative fashion.”                            The Neuroscience of Drumming

 

 

 

Want to experience your own drummer’s high?

Click here and tap along to the beat.

The beat goes on at KC Memory Cafe. Brandon Draper of Drum Safari reminds us how connected we all are by tapping his hand on the table. “No matter where we come from, we all share this internal rhythm, our heartbeat,” he tells us. We tap along with him, and follow his lead as he introduces other more complex beats. Ninety of us are gathered on the lower level of the Plaza Library to experience the magic of drumming, guided by Brandon, his wife, and two daughters. He introduces us to ancient drums and to contemporary instruments. After our briefing in the powerful history of drumming, we all have an opportunity to experience the “drummer’s high.” 

The excitement and energy in the room builds as we all make music together. We are laughing, banging away, singing call and response, and thoroughly engaged in creating cooperative sounds.

People lingered for a long time afterwards, drawn together by the shared experience. 

Though Brandon has shared his drumming skills many times, performing at the KC Memory Care touched him deeply.  He was thinking of his beloved grandmother, who had lived with dementia. He stayed connected with her through music. “To be here, sharing with all of you, meant so much to me,” he told us.

Our thanks to the wonderful team from Santa Marta Retirement Center, who nourished us with delicious snacks and helped serve everyone. Thanks also to Pam and Beverly, who helped nurture, serve, encourage and keep the beat going on.  Want to volunteer or get on our email list? Just contact Heather Harrison, heatherharrison@kclibrary.org 816-701-3763

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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Some Enchanted Beautiful Morning: Movies & Memories Celebrates Inclusion

The buzz of conversation ceased as singer/actor Robert Gibby Brand stepped up to the microphone. His accompanist, pianist Robert Pherigo, played the opening bars of Oh, What a Beautiful Morning and Brand soared into the “Bright golden haze on the meadow.” Instantly the audience, ages two to 85 plus, was listening raptly. Brand continued his concert, inviting us to sing along on It’s a Long Way to Tipperary, and melting us with the Cole Porter classic Night and Day. Brand told us the story behind each song and left us wildly applauding after performing Some Enchanted Evening.  It was some enchanted beautiful morning at the monthly KC Movies & Memories program. 

But the enchantment didn’t stop there. First we watched the Oscar nominated short, Room on the Broom, which illustrated the joys and challenges of inclusion in a most creative, playful, and poignant way. 

One of the characters said plaintively, “I am a bird, as green as can be. Is there room on the broom, for a bird like me?” The witch’s clingy cat captured that part in most of us that doesn’t want to share, that believes there is not enough. But the witch reminded us, “Yes, there is room.”

Afterwards we discussed the movie, asking who identified with the clingy cat. All of us had to raise our hands. Then we asked who identified with the witch, who welcomed everyone, and there was a large showing of hands.  We also talked about favorite characters and what parts of the film we liked best.  

 

 

To finish our mini film-fest, we played an inspiring clip from a Mr. Rogers show, and showed Purl, an 8-minute Pixar film, about how our differences can enrich our lives. 

It was an inspiring program and everyone left uplifted and delightfully sated by our fresh-made popcorn and other treats.

For a taste of Some Enchanted Beautiful Morning, click here. 

A big thanks to our volunteers, Sharon, Julie, and Pam, and to our generous hosts, The Plaza Library.  

Want to continue the magic at home?

Room on the Broom is a 20-minute  film that is fun for all ages, while being both entertaining and profound. You can easily generate open-ended questions and invite comments and conversation. We talked about, “If you were an animal, which animal would you like to be?” “Who did you identify with?” “What were your favorite parts of the movie?” “Have you ever not wanted to share?”

Want to continue the magic with us?  Mark your calendars for the first Wednesday of each month at 10:30. Please join us for our next cafe and our next movie program.  For more information, contact Deborah at creativity@pobox.com 

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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The Stamp of Fundraising for Dementia: Kudos to Lynda Everman and Kathy Siggins

I am always delighted to get an update from Lynda and Kathy. For years, they promoted the idea of a semi-postal stamp for Alzheimer’s, a stamp that would cost a little more and raise money for the cause. They had to be persistent, dedicated, connective, tireless, creative, and patient. They were.

Their stamp was brought out in November 2017. I was one of the many who were elated. Those are the stamps I buy. I feel joy each time I mail a letter with that semi-postal, knowing that I am raising awareness and money. 

I am sending Lynda’s recent updates. I hope you’ll join me in ordering more stamps right now and in encouraging your representatives to support this stamp, as they can extend the life of the stamp. Lynda and Kathy are an example of how two people, enlisting the support of hundreds of others, can make a dramatic difference. Follow your heart into making your own difference.

Warmly,

Deborah

From Lynda: 

As of the end of February, 6 million Alzheimer’s stamps have been sold to raise $840,000 for NIH funded dementia research: https://about.usps.com/corporate-social-responsibility/semipostals.htm

The sales period for the Alzheimer’s semipostal stamp is time-limited….  The Alzheimer’s stamp which was first issued on November 30, 2017 will be removed from sale on November 30, 2019.

Let’s see what we can do to EXCEED $1 million raised for NIH funded Alzheimer’s research by November 30th! Please keep purchasing and promoting the stamp which is available at most post offices, online at https://store.usps.com/store/product/buy-stamps/alzheimers-S_564204  and by toll-free phone order at 1-800 STAMP-24.

Here’s another update: 

Hello friends,

I am using this tremendous resource from the Alzheimer’s Impact Movement (AIM) to reach out to the health legislative staff of all 535 members of Congress urging all to co-sponsor legislation (H.R. 3113 and S. 1728) requiring the USPS to extend sales of the Alzheimer’s Disease Research Semipostal Stamp for an additional 6 years. 

But I need your help! If you’ve not done so already, would you please call or email your Congressperson and Senators and ask for their support? Below are sample scripts/emails for you to use.

FOR CONGRESSPERSONS:

Request to Co-sponsor H.R. 3113

I want to to call attention to proposed bipartisan, bicameral legislation which, if passed, would extend the sales of the US Postal Service Alzheimer’s Disease Research Semipostal Stamp for an additional 6 years.  

In less than a year and a half on the market, the Alzheimer’s Stamp has raised over $890,000 for NIH funded research for better treatments, prevention and, one day, a cure for these  diseases which have caused too much suffering for far too long. However, despite the fact that 500 million stamps were printed (of which 6.5 million have been sold), without this legislation, all unsold stamps will be removed from sales at the end of November. The passage of this legislation will not increase the Congressional Budget; but it will allow all who use the U.S. mail to continue to voluntarily purchase these stamps to help raise public awareness and funds for critical research.  

Please join your colleagues in co-sponsoring H.R. 3113 “To require the United States Postal Service to sell the Alzheimer’s semipostal stamp for 6 additional years.”

Thank you.

FOR SENATORS:

Request to Co-sponsor S. 1728

I want to to call attention to proposed bipartisan, bicameral legislation which, if passed, would extend the sales of the US Postal Service Alzheimer’s Disease Research Semipostal Stamp for an additional 6 years.  

In less than a year and a half on the market, the Alzheimer’s Stamp has raised over $890,000 for NIH funded research for better treatments, prevention and, one day, a cure for these  diseases which have caused too much suffering for far too long. However, despite the fact that 500 million stamps were printed (of which 6.5 million have been sold), without this legislation, all unsold stamps will be removed from sales at the end of November. The passage of this legislation will not increase the Congressional Budget; but it will allow all who use the U.S. mail to continue to voluntarily purchase these stamps to help raise public awareness and funds for critical research.  

Please join your colleagues in co-sponsoring S. 1728 “A bill to require the United States Postal Service to sell the Alzheimer’s semipostal stamp for 6 additional years.” 

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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Coming Together to Ignite Hope: Working with Dr. Chawla in New Delhi, India

Our Uber driver in New Delhi was a turbaned Sikh with a long gray beard. A sign hanging from the rear view mirror proclaimed, “This car respects women.” He deftly drove us through the city, navigating the melee wherein four lanes of cars compete in a two-lane space. Inside the NGO, Hope Ek A.S.H.A., the receptionist led us into Dr. Chawla’s office. Dr. Chawla has a rich voice and a magnetic presence. She is the catalyst for this center for caregivers, creating the service because of her own experience with her mother and Alzheimer’s.  We were coming together to ignite hope. 

“We know how hard it is for the caregivers,” she says. She and her team help caregivers throughout New Delhi and indeed, throughout the world, educating them, visiting with them and their loved ones who are living with dementia, facilitating support groups, sharing stories and ideas, offering respite and financial support as possible. 

For this event, she has gathered a group of doctors, caregivers, support staff, and more. First, some of her team show us activities they do with clients who are living with dementia. These include chanting, deep breathing, gentle stretching, tapping (EFT- Emotional Freedom Techniques), and a lovely heart opening exercise that affirms “We are healthy, we are happy.” They show us painting and games that strengthen memory.

Join us for these interesting exercises:

Then a caregiver from Mumbai Skypes in. Her voice is sad and her face is drawn and pale. She wipes at her eyes as she discusses her issues with her father. Instantly, one of our caregivers steps forward to offer advice. I share ideas with her as well. Then Dr. Sahi, leader of the New Delhi Laughter Academy, guides us in laughter exercises. Within minutes, we are all laughing, even our friend from Mumbai. When the session ends, the worn and weary caregiver has been transformed into an energetic and renewed woman, one who believes there is hope. 

       That’s is one of the reasons we all came together: our mutual hope and our belief that everyone needs support and a sense of community and purpose.

Experience our New Delhi caregiver’s event by watching this 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.

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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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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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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.