Live Well with Dementia

“This is one of my favorite songs. What do you think of it, Fran?” We were sitting in Mom’s room in the memory care community, listening to a recording of The Very Thought of You.  Even though my mother could no longer answer this question, I liked hearing my father ask it.  He honored Mom as his long-time beloved conversational partner.  Through this simple action, he was helping her live well with dementia. His example helped me do the same.

This article by Karen Love, Executive Director of Dementia Action Alliance, reminded me of my dad’s positive outlook. It inspired and touched me and I wanted to share it with you.

By Karen Love, DAA Executive Director

In 1968, Robert Rosenthal and Lenore Jacobson published groundbreaking research that showed teacher expectations of students became self-fulfilling prophecies. At the beginning of a school year, first and second grade students’ IQs were tested. The researchers randomly selected a group of students regardless of their actual test results and led the teachers to believe that this group was capable of great academic achievement. The teachers, perhaps unwittingly, gave the students with the presumed higher IQs more positive reinforcements.

At the end of the year, the students were retested. The group labeled high academic achievers did, in fact, show higher achievement than the other students. Robert Rosenthal summarized this research finding as – “What one person expects of another can come to serve as a self-fulfilling prophecy.” This outcome, retested and proven by many others over the years, has become widely known as the Pygmalion Effect.

The dynamics of the Pygmalion Effect have significant impact for those who want to live well with dementia. There is abundant anecdotal evidence among person-centered dementia care experts that the Pygmalion Effect similarly applies.  Family, friends, and others may have low expectations regarding what people living with dementia can and cannot do and how they can function and live. While they may not even be consciously aware of this view, these lowered expectations affect every aspect of the relationship. They don’t engage, interact, and provide opportunities for interesting and fun activities at the same level they would if their expectations were higher.

I experienced the Pygmalion Effect this past week at a memory care assisted living community. I saw a resident sitting alone, apart from the others. I asked a staff member about her and was told she had very advanced dementia.

“What does she like to do?” I asked.

“Nothing, she can’t do anything.”

I knelt beside her and offered a small pillow covered in a soothing, tactile fabric. She immediately started stroking the pillow and then explored the seams. Her expression turned sweet and serene.  Touching the fabric was comforting to her. As I was getting ready to leave, the woman’s daughter arrived. I introduced myself and described how much her mother enjoyed the tactile pillow.

“Mom was a seamstress and loves the feel of fabric,” her daughter said, smiling at her mother. “I should bring one of the lap quilts she made when I visit.”

Her daughter was reminded of something her mother liked to do and she felt grateful she could bring something that would please her mom.

I was reminded how important it is to have interesting and engaging items when we visit. Examples include scented lotion, a tactile pillow or fabric scraps, and an enjoyable short story to read aloud.

Helping someone live well with dementia invites us to open our eyes, our hearts, and change our mindset.  Instead of perceiving limitations, we can spark the Pygmalion Effect by setting positive expectations. We can help make living well with dementia a self-fulfilling prophecy.

Karen Love, gerontologist – Executive Director, Dementia Action Alliance – Powered by People with Purpose 

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.

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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Adapting to Dementia: Laurie Scherrer’s Inspiring Story

“I’m having a slow day,” Laurie Scherrer says, when I call her Pennsylvania home for our scheduled conversation on adapting to dementia. “So bear with me.”

It was easy to bear with Laurie, as she is bright, positive, articulate, insightful, and authentic.

I met her during a telephone interview for the esteemed podcast, Alzheimer’s Speaks, which she co-hosted along with founder Lori La Bey. I was so impressed with both of the women’s insights and interviewing abilities, and I wanted to learn more about how Laurie managed her life with early onset dementia.  Here are some highlights from our conversation.

From Sales Leader to Closet Cleaner

How do you go from excelling in a distinguished business career as a top manager and sales leader to becoming an unemployed 55-year-old woman who can no longer do a simple math problem or weed her prized garden?

That’s what happened when Laurie Scherrer was diagnosed with early onset dementia in 2013.  After days of languishing at home, cleaning out closets, and feeling like a complete nobody, she realized she needed to take action. And being a woman filled with determination and creativity, she did just that, with her husband offering his unwavering support.

“I have a passion for excellence and the recognition that comes with it,” Laurie says. “Being Number One in sales drove me.”

Since she had nothing to push towards, she turned toward writing blogs and to her former passion for sewing, so she’d once again feel accomplished. Plus, Laurie wanted something tangible to give to her family members, something that said, “I love you.”

Forgetting the Curves and Going Straight

In her earlier days, before her career consumed much of her time, Laurie was an accomplished seamstress, reveling in creating costumes for church programs. She had loved sewing quilts and clothes and decided she’d return to her former hobby.

She sat down with yards of fabric, ready to cut quilting squares. But hard as she tried, she could not figure out how to cut the fabric. She was slumped over her sewing machine, weeping, when her neighbor dropped by.

“I can’t do this anymore,” Laurie said.

“I’ll help you,” her neighbor said.

She brought over a cutting board with lines in it and talked Laurie through the process of cutting the cloth.

“Once she helped me lay it out, I could do it again,” Laurie says.  

Laurie has since created blankets, pillowcases, burping cloths, and more for her family.

“The straight lines are working for me,” she says.

Noticing the Blessings

Laurie is making the most of her life. She treasures her glorious back yard and her deepened relationship with nature.

“Before, I was so busy, I never saw all the beauty around me,” she says.

She also treasures her worldwide friendships with people living with dementia, which she nourishes through video chatting and posting on Facebook. She and some chat friends recently started a virtual spiritual dementia café, where they read, discuss scripture and pray with and for people from all over the world.

Most of all she loves knowing she is giving back and helping others through her writing, speaking, radio hosting, and advocacy.

Teaming Up to Produce Great Results

Laurie and her husband work together to help her live a vibrant life. Here are their tips:

• Have a designated place and time to escape to, with no phones or email, so you can talk, cry, and really express yourself.

• Talk through the tough times. Notice when someone has a difficult day and figure out how you can improve things.

• Work together to adapt beloved activities.  

• Laugh as much as possible.

• Be thankful for every good moment.

I know you’re going to want to know more about this remarkable woman and her tips for adapting to dementia.  Visit https://dementiadaze.com/about-me/

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.

Sharing Your Caregiver’s Story

My mother’s Alzheimer’s drove me to write. My writing inspired me to speak. I have received enormous pleasure from connecting with people all over the world, sharing my stories from Connecting in the Land of Dementia and from Love in the Land of Dementia. Now, I’m offering you tips for sharing your caregiver’s story.

 

It All Started with Grief

When I initially realized the depth of my mother’s memory loss, I was shattered with grief.

Every day I went through this:

Visit with mom.

Drive home, wiping tears from my cheeks.

Stumble into the house, walk into a chair or table, and misplace my car keys.

Sit at the dining room table and stare numbly into space.

One day, during the “staring numbly” phase, my partner Ron said, “Are you writing down your feelings?” It was a smart and sensible thing to say; the sort of suggestion I might make to him in a crisis. I was, after all, a writer.

“I don’t feel like writing,” I said.

But his words stayed with me. The next day, I slightly altered my behavior.

Visit with mom.

Drive home, wiping tears from my cheeks

Stumble into the house, walk into a chair or table, and misplace my car keys

Sit at the dining room table and write numbly for 20 minutes

 

Pouring Emotions Out & Inviting Understanding In

I poured out my fears, anger, and grief. After doing this for a week,

I began noticing how interesting my visits with Mom were; we were explorers on a wild inner trek.

I started documenting our time together, sometimes even taking notes during my visits. I wrote about the challenges, humor and blessings. I wrote about my conversations with my father, with friends and family and with the aides, the nurses, the social workers. As I wrote, I saw there was much hope, promise and energy in my new world.

As I shared my work with friends and family, I realized I was chronicling my mom’s last years and capturing part of our family history.

Sharing Your Caregiver’s Story

How do you take a challenging part of your life and bring it to the page?    Here are a few simple tips:

Pour Out Your Feelings  

Give yourself time to feel your emotions, whether it’s through writing, art, music or other expressive arts. Writing down your feelings helps you understand the depth of what you’re going through. For me, writing helped change my fear into curiosity.

Notice the Details

Write down the particulars, noting simple concrete facts. You are a researcher collecting data.

Uncover the True Story

Look for the universal meaning in your specific experience. How have you changed? How will the reader change through reading your words?

Ask for Feedback

Read the story aloud to someone and see how it sounds. What’s working and what’s missing? Ask colleagues for a professional critique. Think over their advice and decide what is right for you.

Celebrate your Accomplishment

Sharing your caregiver’s story takes courage.  Yet, for me, it is one of the most cathartic and meaningful things I  do.

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.

Paradise Lost and Found: Two Women Take Action on Alzheimer’s

Like most visitors to Bermuda, we were interested in the lush sand beaches and warm tourmaline ocean waters. But we were also interested in meeting Liz Stewart and Marie Fay of Action on Alzheimer’s. These  two women are using their considerable energies, connections, and talents to enrich the lives of Bermudians who are living with dementia. Liz and Marie inspired us with their passion and accomplishments and we wanted you to meet them as well.

~~~~~~~~~

“Now what?”

That was the question Liz Stewart asked after her mother was diagnosed with dementia. It was 2004 in Bermuda and Liz could not find any support services for herself or her mom. She was thrust into the care partner’s role without any education on the subject of dementia. Liz knew, “It’s not what you know; it’s what you can learn,” and Liz began learning fast. She soon realized she was not alone. In Bermuda, there were hundreds of people living with dementia.  Liz’s quest to help her mother turned into a determination to help others living with dementia. She formed a non-profit organization, Action on Alzheimer’s, in late 2012. She volunteers her time and works with Marie Fay, an occupational therapist with special dementia training, offering support services, education, and training throughout the islands.

Liz and Marie are a two-woman transformation team who have gathered other like-minded people.

They provide free dementia training to the island’s care communities, hospitals, doctors, and families. They collaborate with local musicians and movement specialists and host frequent expressive arts sessions, including drumming, movement, and singing. They work with government officials, advocating for those who need more resources.  And they are talking about the issues, raising consciousness through Alzheimer’s Awareness runs, wine-tasting fundraisings, and community events.

Now, when someone is diagnosed with dementia on Bermuda, they don’t have to feel totally isolated and confused. They can turn to Action on Alzheimer’s.

If you know of other people who are making a difference, please let me know. I love being inspired by the passion and compassion of world-changing souls.
To learn more about Action on Alzheimer’s, visit  www.alzbermuda.com

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.

An Inside Look at Creative Aging

We are huddled on the floor, concentrating on our assignment. Each of us has shared an important saying or proverb that impacted our lives and now we are turning those six sayings into a song. We have a daunting five minutes to accomplish this creative task. However, we also have songwriter and musician Vanessa Torres from Lifesongs to guide us. After we’ve shared our sayings, Vanessa instantly comes up with a theme–These Are Things That I’ve Learned. Our song centers around that chorus, with each of us weaving in our personal sayings.

In the other three corners of the room, groups are collaborating, turning their sayings into spoken word, dramatic movement, and theatrical improv. Our facilitator, Susan Pearlstein, Founder Emeritus for the National Center for Creative Aging in Washington, DC, and the Founder of Elders Share the Arts in New York City, calls us back to the circle and each group performs their piece. In mere minutes, we have learned something important about each person, we have created an artistic work with people we’re just getting to know, and we have appreciated the power of creating something together.

This was an exhilarating beginning to the third annual NCCA conference on creative aging.

These are things I that learned at the conference:

Every person is inherently creative. Of course, I knew this. But it is so lovely to be reminded in so many ways. It is so lovely to be invited more deeply into your own creativity through song, dance, theater games, art, movement, and brainstorming. It’s inspiring to be in a room where so many are expressively at ease with their creative spirits.

Here are some insights from conference luminaries. Some are not attributed because I was so raptly listening I didn’t write everything down!

“Creativity is a moment when we look at the ordinary, but see the extraordinary.”

“Art is for everyone. It’s not a frivolous add-on. It’s a vital part of life. Everyone is creative. Dream and dispel the myth that ‘I can’t do art.’ Aging has been treated like it’s all gray but it’s really expansive colors.”  Remarks of Jane Chu, Chairman of the National Endowment for the Arts, Sept 25th, 2016.  Click here to enjoy a video of the Chairman

“Feeling useful is a human right.”

“Fifty percent of our elders feel lonely.” Vice Mayor Karsten Klein, The Hague

“By listening closely to one another, we can help illuminate the true character of this nation, reminding us all just how precious each day can be and how great it is to be alive.” Dave Isay, founder of

StoryCorps, via Eddie Gonzalez

“Bringing what is inside to the outside; it is important to do this as we age.” Mary Luehrsen, National Association of Music Merchants

“Creativity is the connective tissue that we use to build community across diverse differences.” Anne Basting, TimeSlips, ™ Recipient of a 2016 MacArthur Genius Grant

“Instructors need people living with dementia as co-teachers to transform educational goals. “ Dr. Elizabeth Lokon, Opening Minds Through Art

John Killick (right) and Gary Glazner celebrating the power of poetry

 

John Killick, poet, author and innovator in creativity and dementia, heard this wisdom one day while visiting a memory care community:

“Words of comfort are free, but very necessary.”

“I love it when you hold out your hand and water pours from it.”

“If you don’t ask for the moon, you don’t even get a piece of cheese.”

“You have to introduce yourself or else it all goes brittle.”

“Life is the slackness, the film and the veil.”

“Every time I look for home, I find you.”

John says, “This tells me that people with dementia are really creative and all we have to do is listen and be enriched.

This is just a soupçon of things that I learned. I wish I could have talked to every person at the conference. I wish I could have listened full on to their stories, to their sayings and proverbs, to the things that they knew and the things they had learned. Which is one reason I hope to return to the conference next year.

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.