Category Archives: Relationships

An Insider’s Look at Connecting with Music

IMG_4301Encountering fascinating people is always a highlight of our travels. Our recent trip to New York City was dedicated to meeting innovative people in the field of creativity and dementia. I’d interviewed many of these experts for Connecting in the Land of Dementia via telephone or Skype and I was looking forward to learning from them in person.  These are the people who are changing the world and who inspire us to go out there and make our part of the world better.  In the next months, I’ll be sharing some of their wisdom with you.

IMG_4331Marlon Sobol grew up with music and understands its universal healing powers. We visited him at a care community in White Plains, NY, where he works as a full-time music therapist.  We watched in awe as Marlon worked his carefully orchestrated magic. He started with soothing tones from the marimba, moving into singing everyone’s name as a way of connecting with them. Then he played familiar songs to invite singing along. Finally, he added soundtracks of West African and Caribbean music, which inspired the staff and some of the residents to burst into dancing. In honor of our visit, Marlon played and sang, “Going to Kansas City,” which made us leap out of our chairs, sing along and dance.

Here is a tip from Marlon:

“Our names are so important. Music is a way to help people stay connected with their names. I often sing a name as a way of engaging. You can add a name to any simple tune and invite people living with dementia to sing along.”

Click on these shorts videos for other ways to incorporate music and movement into your everyday life.

The power of a name

The power of music and movement

Read more about Marlon’s programs in Connecting in the Land of Dementia: Creative Activities to Explore Together.  Order your copy from your favorite independent or online bookstore.

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The Inside Story of Designing for Dementia

IMG_1395I love being around visionaries and Cathy Treadaway, PhD, is certainly one of them, changing the world one playful textile at a time. Cathy is the Professor of Creative Practice at the Cardiff School of Art and Design, Cardiff Metropolitan University, Wales, United Kingdom and she contributed to my upcoming book, Connecting in the land of Dementia: Creative Activities to Explore Together. I recently visited her at her university office in Cardiff, Wales, and wanted to share a few of her successes with you.  In these stories, you’ll find intriguing ideas you can adapt to your own situation.

Walking in the Park Without Leaving Home

They often visited the park, walking the paths hand-in-hand, admiring the flowers and foliage, listening to the birdsong, enjoying the breeze and the fresh air. But as his dementia progressed, he could no longer navigate the park. Until Cathy Treadaway and her team created a tactile textile replica of the park, complete with interactive technology. When he pressed one of the tree icons, he heard the sound of the wind. He pressed another and was rewarded with birdsong. Now, they sit together and he traces the cloth paths and creates the sound effects as she talks about the outdoors and reminisces about their times together.

For Cathy Treadaway, that’s what her work is all about: enhancing life and keeping people connected. She specializes in creating individualized “playful objects,” interactive textiles that mirror the person’s interests and passions.

IMG_1376Top Dog

When Cathy asked about one person’s special interests, a favorite pet, a Westie, came up again and again. Cathy and her team set to work, building an apron that featured a soft white Westie that barked when pressed. The team velcroed the dog onto an apron. The woman living with dementia was fascinated by the apron and by the texture and sounds of the dog. So was her two-year-old great granddaughter. The apron gave her focus and pleasure and also offered conversation points for her multigenerational family.

Making Visits Meaningful

“Sometimes visiting someone is hard,” Cathy says. “These individualized blankets and aprons can make the experience easier and more fun for all parties.”

Cathy’s work is focused on compassionate design, using textiles as a means for retaining and building relationships. She often asks people this question: “If you could design something to strengthen the relationship between yourself and someone living with dementia, what would you design?”

For more information about Professor Treadaway and her work, please visit www.cathytreadaway.com  and www.laughproject.info

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

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

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Fulfilling the Bucket List, Trip by Trip

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

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

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

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

DSCN1635Recently, Elizabeth and Charlie were driving around and Charlie said, “What was that long cruise last fall that had so many beautiful places?”

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

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

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

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

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

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

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

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

imgres-1“I don’t know what to do about Mother’s Day,” a friend recently told me. “I used to celebrate with my mother, but Mom doesn’t really recognize me now and the holiday won’t mean anything to her.”

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

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

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

Feel Your Frustration and Grief

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

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

Activate Your Appreciations

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

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

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

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

7 Ways to Concoct a Creative Celebration

Share favorite memories

Tell her favorite life stories

List her opinions, maxims and worries

Sing along to favorite family music

Muse over family photos

Serve up easy comfort foods

Share what you’ve learned from your journey with her

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

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An Insider’s Tips for Finding Joy in the Journey

“Alzheimer’s can be a grind,” a caregiver recently told me.

That’s one reason I am constantly seeking those who see the creativity and potential in the journey. I look for inspiration and I found plenty in “Finding Joy in Alzheimer’s: New Hope for Caregivers,” a book by Marie Marley, PhD, and Daniel C. Potts, MD, FAAN. Both have a powerful personal story that they weave into the book, along with practical tips for care partners.

Front CoverThree Ways to Encourage Your Own Love and Acceptance

Here are a few excerpts from Daniel:

  • Each interaction we have with another person presents an opportunity to share the hope that is within us.
  • As care partners, we must identify and embrace the love present within each individual and we must enable the expression of that love, for personhood to be preserved and dignity promoted. We must also be fully cognizant of the love within ourselves.
  • To come to terms with Alzheimer’s you must first let go of the expectation that you’ll find the previous person and instead embrace the new person– just as he is in the present. Since that person will continue changing as time goes by, one must constantly let go of the old person and accept the new one.

Three Ways to Improve Your Time Together

Marie offers these tips for staying connected:

  • Use welcoming body language. Don’t sit with your arms crossed; sit with your palms turned upward. This posture says, “I’m receptive to you.”
  • Speak slowly and in short, direct sentences, with only one idea to (in) each sentence.
  • Laugh a lot. Arrive for your visit with a supply of simple jokes and funny stories.

For more information about Finding Joy in Alzheimer’s, visit ComeBackEarlyToday.com

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

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