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.

Three 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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Creating Personal Stories from the Care Partner’s Journey

 

My mother’s Alzheimer’s drove me to write. My writing inspired me to speak.

Over the last years, I have received enormous pleasure from connecting with people all over the world, sharing the stories from Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.

 

It All Started with Grief

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

My initial reaction was:

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 suggestions 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 my Emotions Out and 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.

 

Putting Your Life on the Page

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. 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.

 

I was lucky enough to read some of my stories to my mother and father and receive their blessing for my work. Anytime I featured people in a story, I shared it with them to make sure they were comfortable with the material. When they’re comfortable, it’s time to share with friends and a wider audience, if you wish.

 

Here are some writings from other people on this journey. 

 Vicki Tapia’s memoir, Somebody Stole My Iron, details the daily challenges, turbulent emotions, and the many painful decisions involved in caring for her parents. Laced with humor and pathos, reviewers describe the book as “brave,” “honest,” “raw,” “unvarnished,” as well as a “must-read for every Alzheimer’s/dementia patient’s family.” She wrote this story to offer hope to others whose lives have been intimately affected by this disease, to reassure them that they’re not alone.

Greg O’Brien’s story isn’t about losing someone else to Alzheimer’s, it is about losing himself. Acting on long-term memory and skill, coupled with well-developed journalistic grit, O’Brien decided to tackle the disease and his imminent decline by writing frankly about the journey. “On Pluto is a book about living with Alzheimer’s, not dying with it.”     On Pluto: Inside the Mind of Alzheimer’s by Greg O’Brien

Jean Lee’s memoir details her journey caring for both parents who were diagnosed on the same day. It is a WWII love story held together by faith and family.    Alzheimer’s Daughter by Jean Lee  

Marianne Scuicco describes herself as a writer who happens to be a nurse. She writes this work of fiction based upon her care for the elderly. It’s a tenderly told love story about Jack and Sara, owners of a New England bed and breakfast. Sara develops Alzheimer’s and Jack becomes her caregiver.     Blue Hydrangeas by Marianne Sciucco

Shannon Wiersbitzky writes this work of fiction through the eyes of a young girl, not surprising perhaps, as her author bio notes that her own grandfather had Alzheimer’s. In the story, when thirteen-year-old Delia Burns realizes that her elderly neighbor is beginning to forget, she involves the entire town in saving his memories.    What Flowers Remember by Shannon Wiersbitzky

 

 

 

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

Four Easy Ways to Enrich People’s Lives

I wasn’t quite sure I wanted to lie on the floor on that large piece of white paper, but my first grade teacher did not give me a choice.

“Debbie,” she commanded, pointing sternly to the butcher block paper stretched on our school’s aging linoleum. Gingerly, I lowered myself to the ground, moving my arms away from my sides as instructed. Then two classmates traced around me with crayons. Our assignment that day was to draw in our features and our clothes. In essence, we were to clone ourselves using only primary colors. 

Years later, at a self-exploration workshop, I again had to pour myself onto a sheet of paper and allow myself to be outlined. This time I was to draw or write in fears and beliefs along with accomplishments and dreams. This was definitely more fun than grade school and infinitely more challenging.

Just recently, I read about a “blank slate” exercise that I really liked. The booklet You Can Help Someone Live Fully With Dementia: A Guide for Family and Friends, suggests that we take an outlined profile and write down all the ways we might help a person living with dementia enrich his or her life.

I really resonated with this exercise. I also thought this was a beautiful idea to do for friends and family as well. How meaningful to think about ways to improve the lives of those close to us.

This brief book, which is accompanied by an inspiring DVD, offers simple tips to help us increase emotional connections during the dementia journey. Ideas include being enthusiastic and encouraging, thinking creatively when suggesting activities, focusing on the individual’s desires and strengths, and adopting a “no wrong way” spirit. 

This succinct and compassionate guidebook reminds us of the importance of being guided by those who are living with dementia. The authors, Karen Love and Elia Fernia, are advocates who are making a difference in dementia care throughout the country.

 

Karen Love and Elia Femia, PhD are gerontologists and nationally known experts in dementia care. They are the co-founders of FIT Interactive, LLC. fitkits.org

 

For more information about living fully with dementia, please visit the Dementia Action Alliance www.thedaanow.org

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

Rock with Rhymes that Resonate

The audience was quiet, partially because some of the people were slumped over in their wheelchairs, eyes closed. Gary Glazner stood in front of the group, wondering if he could engage them. He had received a grant to offer a poetry workshop in a memory care unit and he had carefully selected several familiar poems. He’d introduced himself to everyone and he was ready to inspire people through reading poetry. But were they ready for him? He took a breath and began.

   “I shot an arrow into the air,” Gary said to the seemingly comatose group.

“And it fell down I know not where,” said an elderly man without even raising his head.

That was the beginning spark for Gary Glazner’s Alzheimer’s Poetry Project, a process he created to help engage and connect with those living with dementia through reading aloud and discussing poetry.

“There are four steps to the process,” Gary explains. “First, a call and response, where I read a line of poetry and the group echoes it. Then we discuss the poem. Next, we add props to the experience and finally, we create our own poem.”

A few of the familiar poems Gary uses include:

The Tyger—William Blake

The Owl and the Pussy Cat—Edward Lear

Wynken, Blynken, and Nod—Eugene Field

How do I Love Thee?—Elizabeth Barrett Browning

Purple Cow—Gelette Burgess

Jabberwocky—Lewis Carroll

Daffodils—William Wordsworth

His website, www.alzpoetry.com, is brimming with verse and rich with recommendations.

Gary has shared poetry with people living with dementia all over the world. His usual session lasts around an hour. He often centers his poems on a theme, such as Summer, Birds, Trees, or Food, and enriches the gathering with objects that engage the senses. For example, to supplement summer-time poetry, he might include a bucket of sand and a conch shell. He brings a misting spray to simulate an ocean breeze and lets people smell suntan lotion. For refreshments, he suggests fresh strawberries, lemonade, popsicles, or homemade ice cream. This four-step poetry process also works at home with just two care partners

“Poetry goes beyond the autobiographical memory and offers care partners a way to communicate with someone who has memory loss,” Gary says.

Good news for the Kansas City area: Gary is doing a poetry workshop here in early October. For more information, contact Deb Campbell at kcseniortheatre@gmail.com

For more information on Gary and the Alzheimer’s Poetry Project, visit www.alzpoetry.com 

Gary’s book is a great resource: Dementia Arts: Celebrating Creativity in Elder Care

www.dementiaarts.com/

 

 

 

 

 

 

 

 

 

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

 

 

 

 

Creating a Real Hit: Building Community Through Drumming

Life is about rhythm. We vibrate; our hearts are pumping blood; we are a rhythm machine; that’s what we are.   – Mickey Hart

Some might have thought it a hassle to be hauling such a large load of percussion instruments, but Renee Kessler didn’t mind. She was thinking of the sudden smile she’d see when her mother-in-law began rhythmically shaking the maracas. Or the joy she’d see in Mr. Norman’s eyes as he beat the drums. She was glad to see the circle of residents in the memory care unit waiting for her and relished offering them choices of bells, clappers, triangles, drums, tambourines, and rain sticks.

“Through our drumming circles, we give people choices, we inspire them and we wake them up. Their eyes brighten when we play music,” Renee says.

Renee has a long history of waking people up through engaging them in creative arts. She worked as a teacher for an esteemed arts school in West Palm Beach, Florida,  and now serves as a consultant, helping students prepare for arts programs. And she’s long been involved as a family care partner. When a drummer friend invited her to visit memory care units with him, she was eager to go; she’d been collecting instruments for years.

The experience was meaningful for all involved. Once they talked to each participant and distributed the instruments, the drummer set a beat and gradually everyone chimed in.

“We kept the flow of the energy and then we stopped and invited people to make random noise,” Renee says. “People were very expressive and eager to beat on drums, flap the clappers, and shake bells.”

Being part of rhythm and music energized and equalized everyone and built a sense of community, creativity, and connection.

Want to create connection through percussion instruments?

• Set the tone with a drumbeat or select a CD of familiar music with a definite beat.
• Offer a choice of noisemakers. If needed, you can beat a pen on a book or put some beans in a jar to make an impromptu shaker.   Or you can hit two spoons together.
• Encourage your loved one to make as much noise as possible. Do the same. There’s liberation in making noise and there’s a sense of connection sharing the same rhythm.

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