The Arts

Everyday Heroes and Nine Great Things We Learned This Weekend

This weekend we were lucky to be around a lot of heroes—the staff and grantees of The Brookdale Foundation Group, which supports national Relatives as Parents Programs, along with Group Respite programs.  We loved the sense of commitment and community we felt at this event and we also enjoyed learning from other speakers and the attendees. Here are the nine great things we learned from this weekend’s conference.

I.

Explain

Kent Karosen, President and CEO of the Fisher Center for Alzheimer’s Research, spoke about his new children’s book, Why Can’t Grandma Remember My Name?  Written about the way the brain is impacted by dementia and the affects it has on children, the book is illustrated in brilliantly colorful art, created by children, juxtaposed with art by people who are living with dementia. To learn more, www.alzinfo.org

 

 

 

II.

Reframe

Frances Kakugawa, author of I Am Somebody, spoke of the powerful role poetry played in her caregiving role throughout her mom’s dementia journey. While scrubbing the floor after her mother’s bathroom accident, Frances thought, “There must be another poem here.”  She decided to consider herself a poet-caregiver, rather than a struggling-caregiver. Reframing her image and her language helped her transform her attitude. You’ll enjoy visiting www.franceskakugawa.wordpress.com  and learning more about Frances, her writing, and her many books.

 

 

III.

Play

Who knew you could have so much fun with poetry! Gary Glazner, for one, founder of the  Alzheimer’s Poetry Project, who lead the whole group in a rousing call and response version of several popular poems. Gary added in music, movements, and stoked up our enthusiasm and our energy. We also created a poem together. You’ll enjoy using his ideas to deepen your communications and your connections. Visit www.alzpoetry.com and treat yourself to his book, Dementia Arts: Celebrating Creativity in Elder Care.

 

 

IV.

Support

We were shocked and saddened to learn there are more than one million caregiving youth in our country, struggling to stay in school and keep afloat while taking care of ailing family members. Connie Siskowski’s organization, American Association of Caregiving Youth, provides support for these gallant middle schoolers and teens. To learn more about her program, visit www.aacy.org

 

 

 

 

V.

Care

How many of us take enough time to truly care for and nurture ourselves. Jane Barton, speaker, write, and listener, spoke eloquently of compassion fatigue, born of too much caring for others and not enough focus on self. We laughed, cried, and reminded ourselves of the importance of self-care. Learn more from her at www.cardinalife.com and see her book, Caregiving for the GENIUS: Understand the Journey from the Inside Out.

 

 

 

There were more amazing speakers, but we didn’t get to hear them because we were speaking all day Saturday, sharing two information-packed sessions of Connecting in the Land of Dementia and one session of  our beloved The Hero Project. But just because we were teaching doesn’t mean we weren’t learning. Here are just a few of the tips we gathered from our participants.

 

VI.

Give

As a way of adding meaning and purpose to life,  one memory care day group created dog biscuits to donate to their local animal shelter. They stirred up a healthy mixture of organic ingredients, used cookie cutters, and delighted a lot of lonely pooches.

VII.

Collage

Another day care center helped a non-verbal resident create her own collage. One caring person watched carefully as this elder looked through a magazine, pausing at pictures of interest. Then the caregiver tore the photos that had intrigued the woman. Together, they glued them into a collage that the woman enjoys looking at often.

VIII.

Sing

“Song titles inspire singing and conversation,” one participant told us. She shouts out familiar titles and someone in her memory care group usually sings the next couple of verses, with others joining in. This often sparks a conversation about the song.

IX.

Share

The sense of community and generosity during the weekend reminded us again of why we love doing this work and of the importance of sharing things that work, things that don’t, and asking about things we wish we knew. Often, someone else has an answer for us, usually one of those quiet, but powerful, everyday heroes.

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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How to Create Better Connections in the Land of Dementia

Ron and I both love helping people create better connections in the land of dementia.  We are enjoying the second year of our meaningful Movies and Memories film series.  Our next free movie events (and I say “events’ because there is so much more than just sitting and watching a film) are September 10 and November 5.  Please tune into Kansas City Live on KSHB-TV on Thursday, September 7 during the 10:00 hour, for additional details. 

I was delighted to be featured on Mike Good’s Together in This recent podcast. Mike is a gifted interviewer, with an authentic voice and a true commitment to help people stay better connected. I so enjoyed our time together and wanted to share the interview with you.

Recently, we have been connecting through creating laughing classes for caregivers, elders, people who are living with dementia, and others. We love going around to care communities and laughing with community members, family, and staff. Our next public laughter presentation is at the Landon Center, on October 18 at noon. It’s free and open to the public. If you’re in the Kansas City area, please come laugh with us. It’s great fun!

A quick laughing exercise

I was honored to have a book excerpt featured on Maria Shriver’s website.  Maria does amazing work and her new book, Color Your Mind, is a visual and information treat, full of inspiring ideas.

I was thrilled when a story of mine was accepted by Chicken Soup’s The Dog Really Did That? The story honors Ron’s mom, Mollie, and her love for a dog named Biscuit. If you have a chance, read my story and so many other great essays in this inspiring book.

Finally, thanks to Mary Anne Clagett of Creative Forecasting, a publication for Activities Professionals. She is featuring a review of Connecting in the Land in their November issue. The publication brims with interesting ideas for creative and meaningful activities.

There are so many ways to Create Better Connections in the Land of Dementia, and as you can see, there is power in sharing stories, laughter, and the arts. 

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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Let’s Go to the Movies: A Dementia-Friendly Series

“Let’s go to the movies,” my dad often said to my mom. My parents would have loved our Movies and Memories series, now starting its second year.  We are excited to announce our partnership with the Kansas City Boys Choir and the Kansas City Girls Choir this season. Some of their outstanding performers will be joining us at each event.

Already, the series is making a difference in a variety of ways. Additional libraries in Missouri and other states are interested in implementing the program. And our library is so committed to becoming more dementia-friendly that it is having special training for its staff, courtesy of the Alzheimer’s Association — Heart of America Chapter. Please share this invitation with those who would enjoy it. And if you’re in the Kansas City area, please join us. It’s free and open to all. Let’s go to this movie series!

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 as a Creativity Catalyst: Featuring Grace and Spencer Townley-Lott

How do we keep our sense of connection and creativity through the caregiving journey? That was a question I often asked myself. I wanted to share this story of an extraordinary couple– artist, dementia advocate, and social worker Grace Townley-Lott and her husband, puppeteer, actor, and playwright, Spencer Townley-Lott. Both use art as a creativity catalyst in their work and throughout their lives.

Their elders inspired them. Grace and Spencer were teenagers when her grandmother and his great-grandmotherwere going through a dementia journey. The experience was difficult and impactful.  

            Grace became a social worker, specializing in older adults and learning how to communicate with people who were living with dementia, often through art.

            “It’s incredible how the arts open people up,” Grace says. “Someone who hasn’t painted in 20 years picks up a brush and creates something beautiful.  Someone who hasn’t spoken in ages delivers a zinger of a one-liner. Every day, I see how creative people are and the connections that are still possible.”

            As Grace unfurled her work experiences, Spencer gained a new understanding of his great-grandmother’s last years. He used those insights to create a critically acclaimed play, Blossom. This play, which utilizes puppets, was funded by a Jim Henson Foundation Grant. It focuses on James Blossom, a retired painter who is living with dementia and his family’s changing relationships.

Caregivers often wonder: “How do we keep creativity alive?” Grace and Spencer were kind enough to share some ideas.

Engaging in New Endeavors: Grace

            Try to be in the moment, despite your list of tasks. Respond to and validate emotions. Be willing to go with the flow so you can allow creative sparks.

Pay attention to facial expressions as you invite your loved one to engage. If you start dancing, do their eyes light up and do they laugh? If you offer watercolors and cue your partner to touch the brush to wet paper, does he respond with joy when the color blooms on the page?  If you’re having a hard time getting your partner to take a shower, croon a song and waltz with him into the shower. If it doesn’t work, that’s okay, too! But if it does work, it’s a lovely and practical way to connect, create, and take care of physical needs as well.

Sometimes it takes reframing the situation to view the possibilities. An outside person or idea can often expand your thinking.

Creativity Tips for the Care Partner: Spencer

Sometimes, physical actions can help release tension to allow for more creative thinking. Deep breaths and stretching can help you loosen up at first. In the theater world, we start every rehearsal with a physical game or action to help us get focused and leave our stress at the door. Try wiggling and shaking your feet and hands, giving yourself a brief facial massage, stretching as tall as you can, and twisting gently left and right. You’re getting the blood flowing, leaving the worried part of you in the hallway, and getting ready to create.

Allow room for surprises. Try to set the tone by modeling joy and openness. Be willing to try again.

Connecting through Art: Grace

I love viewing art with people who have dementia.  Art is so subjective, so there’s no wrong answer to the question, “What do you see?” You can take that first question and lead it along into a fascinating conversation, one question at a time, building a fulfilling conversation with an individual or a group.

In these art viewings, a discussion about a painting can tap into emotions that would otherwise be left undiscussed, or it could lead into a beautiful conversation about the person’s childhood, for example. You never know where the conversation will lead! This creates a failure-free situation where a person with dementia can excel and their answers are valued.

Connecting through Puppets: Spencer

Puppets offer a level of separation for the care partner.  For people living with dementia, a puppet’s cues may be simpler to decode, dramatically expressing joy or sorrow.  The puppet can place a hand on a shoulder and offer many opportunities for sensory engagement.

Puppets can also encourage intergenerational play, creating connections between family members who may be unsure who to communicate with their loved one with dementia.

Keeping Your Creative Flow: Spencer and Grace

Flowing creativity

“Creativity is inherent in all of us,” Spencer says. “It’s a muscle you can strengthen. Be patient with yourself.  The first day, you can only do one push-up.  The second day, you can accomplish two or three. That’s what creativity and artistry feels like. Start small. You are laying the foundation.  And it gets easier.”

“Be present and be ready for anything,” Grace says. “By asking your loved ones for advice, truly listening to them, and just being with them, you can form beautiful interactions throughout life.”

To learn more about Spencer, visit

www.misterlott.com

To learn more about Grace, visit

gracetownley.com and theartfuloven.com

Grace is the Director of Truly Inspired Outreach and Education for True Care Home Health.

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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Embracing Person-Centered Dementia Values: The Dementia Action Alliance

One by one, we say hello via video conferencing. We are writers, artists, and arts advocates from all over the country. One sculptor enriches the visual aspects of our meeting by strolling through a museum, giving us occasional glimpses of vibrant art. We meet another artist’s dog. Via video, we see each other’s offices and learn each other’s names and goals. Some of the participants are living with dementia; some are not. All of us are brainstorming ways to use the arts as a catalyst to connect people. Already it is working: through the Dementia Action Alliance, our arts group is already engaging in deep and honest conversation, discussing ways to weave creativity and the arts through June’s conference in Atlanta, and exploring ways we can help others stay connected through the arts.

I have long admired the Dementia Action Alliance and feel honored to be part of their creative process. Their “Person-Centered Dementia Values and Principles” were inspired by the Pioneer Network and have been customized by people living with dementia. Karen Love, Executive Director of DAA, tells us, “Because people who have dementia are the experts, the values are written from their perspective in first person narrative.  This orientation helps us focus on what is important.”

Here are some of their core ideas:

Person-Centered Dementia Values and Principles

• I am a person living with dementia. Spend time getting to know me and relating to me as a person with a unique background, life history, interests and capabilities.

• Help me stay connected to what is important to me. Although aspects of my personhood may become increasingly hidden, I am still here.

• A reciprocal relationship is important to me. Autonomy, choices, dignity, privacy, self-determination are fundamental to my well-being.

• Support my holistic emotional, social, physical, cultural, sexual, and spiritual dimensions.

• Promote my personal growth and development.  Help me continue to experience purpose, meaning, relationships and enjoyment in my daily life.

• Partner with me, utilize my strengths, and provide the right amount of support and opportunities I need to achieve my goals.

• Some dementia symptoms may interfere with my communication. I communicate the best I can; assume positive intent. Attempt to understand my needs and my reality. Please be compassionate.

For me, reading these principles reminds me how much we are all alike.

For more information on this topic and to learn about the DAA’s upcoming conference:

Conference: Re-Imagine Life with Dementia

You’ll enjoy reading this white paper on Living with Dementia: Changing the Status Quo, DAA

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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Sharing Ideas for Staying Connected

“How do we stay connected during the dementia journey?”  This is a question with dozens of creative answers. Recently, we spent time at Northland Shepherd Center, hosted by Dianna Englander. We  were sharing ideas for staying connected with the Together We Care Caregiver Support Group, a lovely gathering of family caregivers and friends.  

Caregiving is such a creative practice, demanding flexibility, humor, and the willingness to make mistakes and try again. We discussed ideas from Connecting in the Land of Dementia, including incorporating singing, laughter, and art into everyday life. We also explored the power of nature and talked about unique concepts for bringing the outdoors inside.  We brainstormed different ways we could prepare food together and connect in the kitchen.

Here are some extra ideas we learned from our audience. I’ve changed the names to protect people’s privacy.

Anne’s father, who was normally very active, became very upset when his care facility had to temporarily curtail his movements, due to a flu outbreak.

“I want to go to the hospital,” he told the care staff repeatedly. Finally, they called Anne and asked her to come over.

“Dad was just wild,” she told us. “So I asked him to take a deep breath with me, and told him we were going to watch a basketball game before we problem-solved.” They watched an hour of basketball, which soothed both of them.

“I want to go to the hospital,” her father said.

“Why?” she asked.

“So I won’t feel alone,” he said. “I’m scared to be alone.”

Anne realized how social her father was, always walking down the hallways, greeting people, spending time visiting. She instantly began to problem solve, getting permission to walk down the corridors, wearing protective masks, gathering phone numbers of her father’s friends at the home, so he could call them.

“Taking a break and doing something soothing first really helped us figure out the problem and then solve it,” she said.

…………………….

Before her dementia advanced, Sandra’s friend loved singing in the church choir. Now, when Sandra visits her, her friend frequently asked the same question over and over. Sandra turns to beloved hymns they both know so well and when her friend becomes anxious, starts singing to change the energy. Soon, they are both singing, as they have for so many years, the old hymns guiding them back to a deep connection.

…………………….

Patriotic songs inspired Alvin’s father, Fred. So often, Fred literally tuned out the singers who came to entertain at his memory care community. One day, the group began singing “The Star Spangled Banner,” Instantly, Fred stood and put his hand over his heart. He sang along and kept standing and singing through all the familiar patriotic melodies. Afterwards, he talked about his time in the service, breaking his usual stoic silence.

At the end, we all felt a sense of renewal and companionship. Sharing these important creative ideas had enriched our lives and inspired us anew.

I’d love to hear your ideas for staying connected. Please email me at myinfo@pobox.com.

For more information about the Northland Shepherd Center, visit http://northlandsc.org/about-nsc.html

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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Insider’s Tips for Analyzing Activities Programs

My mother had been an artist in her later years, but she stopped painting when she began living with memory loss. Instead, she took comfort in listening to music and in nurturing a baby doll. Ron’s dad studied architecture as a young man, but never had the leisure time to pursue drawing or art.  When he moved into a memory care community, he flourished in the Memories in the Making painting program.  We worked hard to find care homes that nurtured our parents and my background in healthcare helped us develop a few insider’s tips for analyzing activities programs.

“Families need to share information about favorite hobbies and they also need to be ready for their loved one to try new things and possibly change interests,” says Alisa Tagg, President of the National Association of Activity Professionals. Alisa has helped dozens of facilities build meaningful activity programs.

Here’s an example of how one woman thrived on learning a new skill and giving back:

Mary’s family was amazed when she got involved in a jewelry-making class in the memory care unit.  Mary had never thought of making jewelry and she never even wore necklaces, bracelets, or earrings.  But she loved beading and was thrilled to share her creative designs with others. Producing something beautiful for others motivated Mary. The facility helped her sell her jewelry and she contributed the money to the activities budget and also donated to charity.

Alisa knows how emotionally challenging it is for families to find good care facilities for their loved ones. Here are some of her insider’s tips for analyzing activities program.

See For Yourself

“You have to view what is going on in the activity room,” she says. “See how the staff interacts with the residents. If there’s an entertainer, is the staff in the back of the room, charting and talking? Or are they in the front, dancing, and singing and engaging with residents and families?”

Look at the activities calendar. Visit the facility at different times and on various days and see if the activities in progress match the scheduled events.

Encourage Engagement

Study the schedule to see how often the residents are engaged, rather than just being entertained. Are they invited to contribute to community service projects? Are they going to sing-alongs or helping with baking projects? People with memory deficits need a variety of activities. Look for a variety of programming that balances the four areas of wellness—spiritual, mental, physical, and emotional.

Visit Programs of Interest

Visit the programs you think your loved one might enjoy.

Find out how many staff members assist in the activities program.

Does the care staff seem aware of the importance of activities? Is there one-on-one assistance for those who want to participate and need extra attention?

Watch for Independent Projects

Is there a place for puzzles, games, cards, and other things people can enjoy independently?  Are there opportunities for residents to contribute to their community and to help others around them?

Share Questions and Concerns

“Every facility should have a plan of care meeting, where family can share their expectations and concerns with the nursing staff,” Alisa says. “Ask how your loved one is doing. Share your insights.

A good facility will welcome that meeting.”

Stay Involved

Stay as involved as you can. Helping your loved one connect through meaningful activities may involve trial and error. Get to know the other residents and their families. You’ll stay engaged with your loved one and create a sense of community with a lot of other wonderful people as well.   #

To learn more about Alisa Tagg, BA ACC/EDU AC-BC CADDCT CDP and the National Association of Activity Professionals, visit  https://naap.info

To delve into creative activities do you can on individual visits, read my latest book, Connecting in the Land of Dementia: Creative Activities to Explore Together.

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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Build Community Through Sharing Stories.

Just blocks from the bustling tourist shops in the port area of Falmouth Jamaica, stands a white stucco Salvation Army Church. Inside this building, we met with local community leaders. We shared stories and information, offering ways to stay connected throughout the dementia journey. We hoped to build community through sharing stories.

Even before we spoke, Shirley Duncan, a volunteer with Alzheimer’s Jamaica, and one of the event organizers, said, “I have a surprise for you.” She spoke eloquently of the need to talk about dementia, to share experiences, and to be there for the caregivers and people living with dementia. Then she told us that today’s participants were making a commitment to form an on-going group that would educate, advocate, and care for those affected by dementia in their community. “We are calling our group Debron, in honor of you two, because you are the catalysts,” she told us.

Ron had been working with Shirley and Dundeen Ferguson of Alzheimer’s Jamaica for several weeks, setting up the presentation. Shirley and Dahlia Klein orchestrated the details, spreading the word among the community leaders, garnering the venue, and making sure all went smoothly. We were thrilled to be catalysts and delighted to be discussing ideas with such a dedicated group of women, many of whom were former teachers.

We shared ideas from Dr. Madan Kataria in Mumbai  about the power of laughter yoga, and we told a story about creating an inland beach from, Dr. Claire Craig in Sheffield, England.  We talked about the power of Dan Cohen’s Music & Memory program and discussed ways to connect through art, citing a story from Teri Miller in Houston, Texas. And we chatted about ways to stay connected through cooking together, sharing our own favorite childhood dishes, which included spiced shrimp, banana porridge, dumplings, roasted corn with shredded coconut, and so much more.

“We will spread these ideas throughout our community,” one of the women told us. “That is what teachers do, we share information.”

We left feeling so inspired and so connected. This is what we all need, caring people, compassionate and eager to learn, ready to offer help and hope.

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During our presentation, we talked about Dr. Madan Kataria’s Ha Ha chorus. At the end, the women said, “We want to sing you a song.” They serenaded us with the Ha Ha chorus. Watch this video and please, sing along.

https://drive.google.com/open?id=0B0elXRV1YrIqUkhqNzN3RkhPSUU

For more about Laughter Yoga, visit Madan Kataria’s website, http://laughteryoga.org

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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Tuning into Music for Connection:  Helping Children Accept Dementia

“Oh what a beautiful morning,” I warbled. My mom clapped and hummed along. At the end of the song, she applauded.  In her earlier days of motherhood, she might have winced slightly when I wandered off-key. But in the cradle of dementia, she was delighted with my smile, my energy, and the sheer sound of my voice. And I was delighted to be tuning into music for connection.

Carol Bradley Bursack, an author, speaker,  family care partner and creator of Minding Our Elders, recently told me the story of how she helped her teenage children stay connected with their grandfather. I loved her ideas and wanted to share her tips with you.

Tuning into Music for Connection 

When he was in his 70s, Carol’s father went into surgery to help repair brain damage from a World War II injury. The doctors expected no issues, but during the operation, something went awry. Her beloved father emerged from the procedure deep in dementia, with a constant voice in his head, and no grasp of reality. Valiantly, Carol dealt with her anger and grief while finding a safe and compassionate care community for her father. Then she began searching out ways she and her sons could stay connected with him.

“Dad loved big band music,” Carol says. “I bought every CD I could find. He loved to direct and listen to the music.”

Finding a Musical Bridge

Carol’s sons were very close to their grandfather. He had always been there for them, a vibrant, fun presence, celebrating their abilities, playing chess with them, and listening to their stories. When her sons saw that Grandfather was so changed he couldn’t even hug them and no longer understood the chessboard, they were devastated.

“They didn’t know how to bond with him,” Carol says.

Carol understood their reluctance to visit and gave them some space. She didn’t make the children feel guilty about their feelings, but she did want them to maintain a relationship with their grandfather. Tuning into music for connection came to the rescue.

The boys both played instruments and Carol urged them to take their clarinet and trumpet to the care community. At first, they were hesitant. They stood shyly before this new grandfather, barely able to blow out the notes. But at the end of their first short tune, Grandfather beamed and asked for an encore. The boys grinned and played more confidently. People came from down the hallways, wanting to hear the music.

“The boys and their music had made a connection,” Carol says. “All three of them were happy and relaxed.”

Creating Together to Build Connection

Carol continued to seek ways to help her sons feel comfortable during their visits. She also wanted them to feel a sense of accomplishment and to cherish their relationship with their grandfather.

Sometimes the boys took hand-drawn pictures to decorate the walls. Other times, they showed up with examples of science projects and told their grandpa about them. The boys brought chess pieces, old photos from Grandpa’s younger days, and games that they’d played with Grandpa. They invited their grandfather to share stories about these objects and often he did.

“It’s hard for young minds to accept such changes,” Carol says. “Their grief can slide under the radar. I was constantly looking for activities we could share, projects that were mutually engaging and that Grandpa could understand.”

Through it all, their mutual love of music kept them together.

For more information on the important work Carol is doing, visit her website: www.mindingourelders.com.

And treat yourself to her book, Minding Our Elders.

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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Using Creativity to Live Successfully with Dementia

“Creativity is evident in every one of us,” says Michelle Niedens, Director of Education, Programs and Public Policy, Alzheimer’s Association Heart of America Chapter. Every time I hear Michelle talk about the creative aspects of living with dementia, I am moved. I was so honored to have Michelle speak at my book launch for Connecting in the Land of Dementia. I treasured what she said about using creativity to live successfully with dementia and I asked if she would allow me to share her words of wisdom and caring with you. Here is her beautiful talk.

Using Creativity to Live Successfully with Dementia

by Michelle Niedens

It has been said that “we are helped by what is not, to use what is”.    In Alzheimer’s disease, there are some things that are not.   But welcoming this philosophy of using what is allows us to explore all the parts that are.   As part of projects focusing on creativity at the Alzheimer’s Association, I have heard many people talk about how they are not creative.   In one way or another, they find a way to let me know they believe they cannot create art, or stories or a collage or whatever forms of creation lay before them.    Yet if we allow our minds to really think about the place of creativity in our lives, we could make a case that it is evident in every one of us.   Whether it be building book shelves, writing poetry, the way we frame our words in conversation, the way we problem solve, the way we play with children, the way we garden and even the way we convince ourselves of things.  Life is both complicated and simple and requires creativity to survive.   It is almost as ever present as thought and breath.

In the poem, “the Necessary Art of Salvaging”, Barbara Lau writes;

In the dumbfounded middle of loss
We still manage to
Open mail
Feed the dog
Answer the phone.
The letter came the same day
My doctor announced
That the minnow heart inside me
Had stopped pulsing.
Back home I ate the lunch placed in front of me
And when the envelope fell through the slot
I opened it.  The handwriting said
That a poem I wrote months ago
Would be released on a polished
White sheet of daylight.
I will never think of it as a fair exchange
But at least I know how to salvage,
How to search through the rubble
For that one unbroken teacup.
In the earlier stages of Alzheimer’s disease, creativity can serve to challenge the mind in new ways, what some might call brain exercise.   It can allow the expression of the mixture of feelings in more comfortable ways or when there are no clear words to do so.    Creativity can connect people and move our center from the relinquishing to the replacing.
In middle stages, there is something lost in Alzheimer’s disease that many of us only wish we could shut off.  Somewhere in our frontal lobe, there is a part that tells us what we cannot do.    It inhibits us.   The part that tells us we would not like a food even before we try it.   The part that tells us we wouldn’t be interested in a play or movie just because of some small variable.   The part defines what we are willing to do or try or even to direct some interest in.  For some people that inhibition is significant.  It can be deeply embedded by early life expectations, culture, messages or even trauma.  We can appreciate that there are times that inhibition is a good thing.  But one only has to be around a person in the middle stage where such inhibition has been diminished to see the good side of that loss as well.
I remember one woman who would come to a poetry group with me every month.   She lived in a long term care facility due to the significance of  Alzheimer’s disease.   She was an only child, parents long gone.  She never married and never had children.  I surmised from her history that perhaps she had always struggled with understanding and interrupting social cues and likely never had an insight into her emotions that allowed her to sort through the depression and anger that periodically flared.   These tendencies did not disappear in Alzheimer’s disease, but what appeared was a person more open to others, less concrete in her interpretations and increasingly able to find ways to connect – always through creativity.   On her last day attending the poetry group, she brought me a clay pin she had made.  It was the shape of a heart – kind of.  It was lop sided with dents where her fingers had tried to mold the clay, painted red with places missed, and wrapped in a kleenix.   I still can picture her face as she handed it to me.  It is one of the most treasured pieces of jewelry I possess.
Another poem, written by Lois Hjelmstad, perhaps better summarizes the significance of incorporating creativity in the experience of dementia.
Pipe Organ
I am not a large woman
And I am aging
I have been diminished by cancer, surgeries and chronic illness
But when I sit at the console
And my fingers touch the keys
My spirit soars.
Here – in the glorious sound –
My muted voice sings again
My faded beauty sparkles once more
My waning strength shakes the rafters.
What I am trying to say is this.  There are all kinds of important ways that focusing on creativity adds to the lives of those with a dementia.  Creativity brings laughter and fun, which we all need.  Creativity brings connections to others.  It provides a mechanism to share feelings and thoughts when other avenues may not be available or as clear.  It can be the way that unfinished business is sorted and that we grow into someone we wanted to be.   In other words, creativity can add meaning.
When I talk with individuals diagnosed with a dementia and their families, conversations include understanding what is lost and making decisions based on those that are anticipated.  But what is most important is finding a way to successfully live each day.   Finding those pieces that allow the muted voice to sing again.   And let the waning strength shake the rafters.  #
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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