Posts Tagged ‘Alzheimer’s Caregiving’

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.”

tenderness

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.hands and heart

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.

Dementia Arts to Draw us Together

September’s Memory Cafe featured a lively team of educators from the Nelson-Atkins Museum of Art. Using the arts to draw us together, they  showed us the Chinese art form of painting pictures of bamboo.  About fifty of us gathered in the the library’s spacious lower level. Colorful plastic cloths covered our tables, making it easy to distinguish our drawing paper and painting supplies. All of us eagerly dipped our special bamboo brushes into the ebony paint and made short pushing movements, replicating segments of the plant’s stalk. Then our educators showed us drawings of bamboo foliage and we experimented with wispy thin lines of leaves.

“I’m glad we’re only using black watercolor,” one of the professional care partners told me. “All of us painting with the same color puts us on common ground.”
Our common ground continued as our teacher said, “Now, we’re going to pass out large sheets of paper.” We all oohed and aahed and let our strokes grow larger and more confident. At the end, each person created a design in a small wedge of clay, pressed the clay into a red stamp pad, and adorned the painting with our own personal “signature.”
Of course, all artists need nourishment and we had wonderful treats courtesy of Kansas City Medicine Partners, Kingswood, Partners in Primary Care, and Morningside Place.
Want to explore using arts to draw you together? Here are some tips fromConnecting in the Land of Dementia, inspired by Berna Huebner, co-director of the documentary, I Remember Better When I Paint.
• Try different types of art in different venues to see what resonates with your partner.

• To add extra meaning, connect the artistic activity with something in your partner’s past.

• Invite an intergenerational mixture of artists, from children, grandchildren, art students, and volunteers to join your partner and add encouragement. 

• Create a variety of art-related activities, including visiting galleries or looking at pictures from magazines, as well as painting, drawing or various media. 

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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Czech Mates in Dementia Care: Laughter Yoga in Prague

The table was spread with an array of Czech delicacies: apple strudel, special sandwiches with flowers of ham atop fresh baguettes, a bountiful tray of strawberries, grapes, and apple slices. 

“This is the way we welcome people here in Prague,” said Lucie Hajkova, social worker and coordinator of respite care for the Czech Alzheimer’s Society.

Ron and I were visiting the Gerontological Centre and the Czech Alzheimer’s Society, which are both housed in the same building. The two organizations work together to offer clients everything they need, from psychological counseling, to memory testing, to social work services, to healthcare. We came to learn and to present a laughter yoga session.

We gathered with staff members around the table to learn about the center, which was started in 1997 by Iva Holmerova, MD. along with Hana Janeckova, PhD. Hana was putting together training materials for caregivers when she was contacted by Alzheimer’s Disease International. They wanted to know more about her work and they invited her to an international conference in Jerusalem. That conference was a turning point. Hana left it inspired and determined to help Czech families that were dealing with dementia. She contacted Iva and both saw the need to offer education, diagnosis, support, and care for people living with dementia and their families in the Czech Republic. Today, both centers are flourishing.

We were impressed with the dementia services they offered, which included home care for people who need help with bathing, dressing, eating, exercise or more. The building holds a respite center. When families need renewal time, or when people living with dementia need extra care or healing time, they can stay in respite for up to a month. The Centre also hosts a day program that offers a variety of activities in a homey and comfortable setting, 

Even more impressive than the Society’s services were its staff. Each had a passion for this work, a love for those who are living with dementia, and a compassion for their families.  

We had a wonderful time sharing a laughing session at the day center—our first international facilitation. We sat in a beautiful circle of people living with dementia, staff, family,  and friends. We couldn’t have done it without our translator, Eliska, who captured the energy and essence of what we were saying. And once we all started laughing, we were beyond the constraints of language. Click here to experience a bit of laughter in Prague.

 

 

 

 

Photo Caption: 

Eliska Brouckova, psychologist, consultant/advisor for people with dementia and their care givers

Martina Matlova, Director

Petr Veleta, PhD, dancer, dance therapist

Marketa Splichalova, psychologist, consultant/advisor for people with dementia and their care givers

Eva Jarolimova, PhD, psychologist, consultant for people with dementia and their care givers

Hana Janeckova, PhD, co- founder of the Czech Alzheimer Society, head of governing board of Czech Alzheimer Society, University teacher, researcher

Lucie Hajkova, social worker, coordinator of respite care in homes of people with dementia.

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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International Insights: Caring in Croatia

Even before Tomislav (Tom) Huić, Vice president of Alzheimer Croatia had a personal involvement with dementia, he was helping the Croatia Alzheimer’s Society with their marketing. As a professional marketer and co-founder of a successful ad agency, he wanted to help the fledgling, all-volunteer non-profit, and he often offered them his professional expertise. Then his mother began having memory issues and Tom became more involved. Today, he is one of the three full-time volunteers who run the 20-year-old agency.

We met with Tom at the Hemingway Bar and Cafe in Zagreb, Croatia, wanting to learn more about ways the society was educating and assisting people across the country and the region. 

“Every year, we offer a professional workshop,” he says. That workshop, plus donations, provides the Association’s only operating money. 

Tom understands the importance of collaboration and education. With a grant from the European Union, he and partners created dementia training materials for nurses. They presented the information to healthcare professionals in parts of Croatia and Slovenia. The programs were well received and he is working on presenting them in other parts of the region. 

Tom also created a partnership with pharmacists in Zagreb. When elders came in to pick up medications, they were invited to take  a short cognition exam. Sixty percent of the participants failed the test and they were given contact information for the Society. But only a handful of those contacted Tom and his team. 

“We still have stigma here,” Tom says. “Plus, many people mistakenly think memory impairment is a natural part of growing older.”

They are collaborating with nursing homes and with governmental health agencies to provide guidelines for memory care beds. 

No money. No budget. Lots of ideas. Too few people and too few finances to implement them. The task ahead of Alzheimer Croatia seems daunting. But Tom and his team are not daunted. They are educating family and professional care partners through a variety of pathways, offering much needed information and support.

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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