Archive for August 2015
Doing the Work of Our Hearts
I woke up in the middle of the night with the answer I’d been seeking: I would self-publish the book of essays I had written about my journey through my mother’s Alzheimer’s and I would donate all the monies from the book to Alzheimer’s research and programs.
It was the summer of 2006, and for weeks I’d been wrestling with a question:
Should I seek a traditional publisher or independently produce the book? Both seemed daunting; in the past, I had primarily written books for and with other people and publication wasn’t my problem. But this book, Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey, was the work of my heart, born out of my desire to stay connected with my mother and find the joys and blessings in her experiences with Alzheimer’s. I wanted to share my stories of hope so they might help other caregivers.
“What about donating a portion of the proceeds?” my partner Ron asked. I was already making a marginal living; Ron’s suggestion was practical but I shook my head.
“I think I’m supposed to donate it all,” I told him. “That way, instead of selling a book, I’ll be raising money for a cause I’m passionate about.”
I talked through the details, consulting knowledgeable friends, an attorney and our local Alzheimer’s Association. My mission: to use the book as a catalyst to raise $50,000 for Alzheimer’s. There was one glitch; I estimated the cost of designing and printing could be in the thousands. Where would I get the money? But even though I was often worried about funds, this hurdle didn’t bother me. My intuition was strong. I was supposed to do this and would raid my savings if needed. Ron was excited about the project and pledged to work with me and help me make it happen.
“We will also help you,” my friends Rex and Jane said. They had shepherded several books through production and were extremely savvy. Plus, they wanted to be part of my mission.
Over the next months, Ron and I spent hours with Rex and Jane, working on design, cover, production and print details. Endlessly patient, they were dedicated to creating the book I envisioned. And they kept their fees to a minimum.
When the finished product arrived months later, I felt a sense of pride and completion. The beautiful cover featured one of my mother’s paintings, the type was easy to read, the interior design inviting.
Ron and I had often performed my stories together, and we began speaking and sharing stories from the book with Alzheimer’s associations, healthcare professionals, caregivers’ groups and others. When we traveled, we reached out to Alzheimer’s groups to set up speaking engagements. We were always moved and inspired by the people we met.
“The person with Alzheimer’s is the pupil in God’s eye,” the priest in a fourteenth-century church in Florence, Italy told us.
“Your story is my story,” a man in Istanbul, Turkey said.
“I’ve been caring for my mother for ten years,” a woman from Brooklyn, New York said. “It has been the most meaningful experience in my life.”
“When I learned Mama had dementia, I quit my job in Houston and moved back home,” a woman in St. Thomas, Virgin Islands said. “I wanted my children to know their grandmother in all the stages of her life and I wanted to be here to care for her.”
Sometimes we spoke in front of hundreds of people; other times we talked to groups of ten. When possible, we brought books and people often donated more than the suggested fifteen-dollar price, knowing that all the proceeds went to Alzheimer’s research and programs.
By 2011 we had done it! We had raised $50,000 for Alzheimer’s. But we kept going; we were still learning and growing. The work was healing for both of us and we loved connecting with other caregivers.
In 2012 I was ready to give the book a wider distribution and reached out to Central Recovery Press. They published an enhanced edition in 2013. Today, our fundraising journey continues as we donate a portion of our proceeds to this important cause.
The self-published version of Love in the Land of Dementia served as a catalyst for raising more than $80,000 for Alzheimer’s programs and research. My stories of looking for the blessings in the journey reached thousands of people, fulfilling my goal of making a contribution to the world. And the bonus was that both Ron and I had changed.
By following our intuition and doing the work of our hearts, we became more compassionate, understanding and trusting.
by Deborah Shouse
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Four Page-turning books
I have to say, I wasn’t really in the mood to read a memoir about the Alzheimer’s journey. But a friend recommended The Long Hello and I sat down to leaf through it. Four hours later, after both tears and laughter, I had completed the lyrical journey, an artful weaving of rational recall and poetic pouring. I could see and feel Cathie Borrie, the author, and I felt I knew her fanciful, magical, distracted, needy, exhausting, interesting mom. Cathie’s honesty and her ability to capture the intricate connections inherent in this dementia journey were like walking a familiar road through a mysterious jungle. This book is a burst of beautiful writing anchored by deep poignancy and meaning.
I also really enjoyed Martha Stettinius’ Inside the Dementia Epidemic: A Daughter’s Memoir. Meeting Martha and her mom on the pages of her searching memoir was like rediscovering old friends. I identified with Martha and I was also caught up in her story. I was moved by her struggle to truly care for and take care of her mother, while still preserving her soul and her family life. Martha did a great job of creating a compelling and readable story, while offering a wealth of practical tips and resources.
Several weeks ago, I wrote about my first visit to an Eden alternative home, the magical Sierra Vista in Santa Fe. The founder of Eden Alternative is Dr. Bill Thomas, who is one of the pioneers in making dementia care more home-like and person centered. His book, Life Worth Living: How Someone You Love Can Still Enjoy Life in a Nursing Home – The Eden Alternative in Action, is rich with ideas for care facilities. Home care partners can use his concepts to make their household even more creative and welcoming. As a bonus, Atul Gawande wrote about Dr. Thomas, in his fascinating book, Being Mortal. You’ll be inspired by Dr. Thomas’s innovation and his tenacity.
It’s not often that you read a book about dementia care and laugh. But when Mara Botonis wrote about carefully laying out supplies for a creative arts project, only to have her loved one staring out the window, then studiously plucking lint from his sweatpants, I had to laugh. I could see my beautiful mom doing exactly the same thing. Mara’s book, When Caring Takes Courage: A Compassionate, Interactive Guide for Alzheimer’s and Dementia Caregivers, is all about making the most of our moments together. Mara knows about dementia from her career in senior living and she has taken the personal dementia journey with her beloved grandfather. She orchestrated the book to make it easy for the exhausted care partner to problem solve and get instant help. She offers activities and projects for a range of abilities and situations.
What books are spurring you onward these days? I’m immersed in writing my new book, tentatively titled Creativity in the Land of Dementia, so I’m focused on the topic in all its forms. The great news is that there are so many amazingly imaginative people out there, making the world a more connective and creative place for those living with dementia, their care partners, family, and friends. Which means, making the world better for all of us.
Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.
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Six Easy Steps for Creating Art that Sends a Message
Art is the only way to run away without leaving home. ~Twyla Tharp
Reverend Katie Norris knows firsthand the power of a welcoming environment. She has learning disabilities and works better in a room free of distractions. When her mom, Carolyn Farrell, was diagnosed with dementia, Katie turned to art as a way to deepen their connection. Her art projects were so satisfying that she wrote a book, Creative Connections in Dementia Care, offering simple and meaningful ideas for engaging through the arts.
Katie grew up going to Montessori schools where everything had a place and the work area was clean. She flourished in that environment and realized her mom would flourish as well.
To prepare the room, Katie removed (or minimized) clutter. She added a lamp to increase the light and reduce shadows. She used brightly colored tablecloths so it was easy to see the
art paper.
Creating note cards is one of Katie’s favorite projects, since they are fun and easy, and result in a tangible, useful gift. If you have time, you can make a card in advance, so you’ll have an example to share. This is a relaxing activity for people of all abilities and does not require an artistic temperament. The complete recipe for notecards is in Katie’s book.
- To begin, set out the materials.
- Fold paper into the desired size. Or you can buy blank cards and envelopes at a hobby store.
- Decide if you each want to make your own cards. Or you can work together.
- Use paints or colors to create a free form design. If you’re working with someone who likes more structure, draw some bright lines on the card to form a simple design. They can then paint within and around the design or highlight the picture by outlining it with buttons, glitter, stickers, or paint. Demonstrate the options and leave plenty of space for creative unfolding.
- Extras include painting the background of the card with a little paint roller, called a brayer brush, adding design with sponge daubers, or gluing on pictures gleaned from old magazines and cards.
- People also enjoy decorating the envelope.
The notecards have a variety of uses, depending on the desires of the person living with dementia. You can donate them to churches or children’s hospitals, give them to friends and family, or frame the finished product for display. Or you can send your own notes on it.
“This project works well with an intergenerational group,” Katie says. “We involved our faith community, by asking them to host a button drive for us. That gave us a chance to share the finished products with them.”
Sharing this art helps people understand the vast creativity of those living with dementia.
For more information about Katie and her book, visit www.RevKatieNorris.com
Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.
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Four Reasons You’ll Want to Read This Book
The thoughts creep in, quietly, sneakily, like Sandburg’s fog “on little cat feet.” I walk into the living room and puzzlement seizes me. I ask myself, “Now why am I here?” I am writing to my cousin and suddenly can’t remember his life partner’s last name. And then there’s the mysterious case of the forest green shirt in the night, gone missing now for four and a half weeks.
Perhaps you, too, deal with these flash thoughts: “Am I feeling the first confusions of the deeply forgetful?” (That’s the beautiful way Stephen G. Post, PhD, refers to memory loss.)
“If I should become more deeply forgetful, I want to be sure you read this book,” I tell Ron.
“This book” is I’m Still Here by John Zeisel, PhD, and I felt enveloped with grace, compassion, and excitement while I was reading it. John is the president and cofounder of Hearthstone Alzheimer Care, and a writer, professor, and vigilant advocate for those living with dementia.
He writes about how he’s been transformed by working with people living with dementia. He orchestrates care partner conversations, where they discuss the gifts of being present for their loved ones with dementia. He’s brimming with creative ideas and activities that bring life and fun to care partners.
With his colleague, Sean Caulfield, he drew into existence the Meet Me at MOMA arts program for those living with dementia, and now offers a variety of artistic and creative programs all over the world. He’s involved in a number of other innovative programs through his foundation, including It Takes a Village, designed to keep people living with dementia connected to their communities and to themselves.
Here is one of John’s thoughts that really speaks to me: “Everyone has his own unique capabilities. … It is our job to uncover, celebrate, and embrace these abilities, so everyone living with Alzheimer’s maintains dignity, independence, and self respect.”
Those words are easily just as true if they read: “Everyone has his own unique capabilities. … It is our job to uncover, celebrate, and embrace these abilities, so everyone maintains dignity, independence, and self respect.”
If you want to feel more connected to someone who’s living with dementia, if you want to celebrate yourself as a care partner, if you want to understand more about the dementia experience, if you want a dash of inspiration and a long cool drink of hope, you’ll love reading this book.
To Learn More about The I’m Still Here Foundation’s programs, visit www.ImStillHere.org
To Learn More about Hearthstone Alzheimer Care, visit www.TheHearth.org
To learn more about John, just Google his name
To order John’s book, visit Amazon.com or another online bookstore
Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.
