As we near Mother’s Day, I naturally think about my mom and all the different experiences we shared. This is an excerpt from my newest book, Connecting in the Land of Dementia: Creative Activities to Explore Together. This book features stellar ideas from more than 60 experts in creativity and dementia. Though this is a story about the dementia journey, it’s also a story about something we all want: love and acceptance.
Take a New Look at the Yellow Crayon
Before he leaves for his outing, my father beckons me out onto the ramshackle porch of the rental cottage. He solemnly hands me a tablet of thick white artist’s paper and a pristine box of 24 crayons.
“I want you to get your mother interested in art again,” he says. “I believe she can still draw and paint, but she resists when I mention it. You’re the only one who can help her.”
My parents, my brother’s family, and my two daughters and I are on a family trip to Hot Springs, Arkansas. Mom has been struggling with forgetfulness and odd behaviors for a couple of years now. As long as Mom is near Dad, she seems happy enough. But when Dad takes even a short break, Mom’s mouth tightens and her eyes search wildly. “Where is …?” she asks, over and again, twisting her hands.
Today, my father is joining my brother and the children for boating and tubing. Since Mom doesn’t like such heat and noise, I volunteer to spend the day with her.
I nod gravely when my father hands me the “art supplies.” I seriously believe I, Super Daughter and Muse, can fulfill my father’s request to reunite my mother and her passion for art.
I haven’t yet accepted Mom for who she is now. I’m still grieving the loss of the mom I’ve always known and I earnestly believe that the best possible idea is to return her to the artist, mother, wife, and grandmother she used to be.
That afternoon, shortly after Dad leaves, I lure Mom to the small Formica kitchen table with coffee and chocolate chip cookies. I hand her a sheet of paper and take one for myself. I spread the crayons out and say,
“Why?” she says.
“Because it’s fun,” I say, touching her hand and looking into her eyes, just as I imagine a muse might do. “Because you enjoy making art. You’re good at it.”
I hand Mom a yellow crayon and I pick up a purple. I envision Dad’s beaming face when Mom hands him her sketch of yellow roses. I imagine his warm hug and his grateful, whispered words, “Thanks, Debbie. I knew you could do it. I feel like your mother’s come home.”
My wild colorful lines fill the page. Finally, I glance up, ready to admire Mom’s work. But all I see is a blinding sheet of yellow. She has scrubbed the yellow crayon across the page. No flowers, no independent lines, no blending of colors. I bite my lip, tasting bitter failure, and imagining the look of despair on my father’s face.
That was before I had learned to let go of Mom as a representational artist and embrace her mellow yellow creation. That was before I accepted the challenge of journeying to my mom’s current world instead of struggling unsuccessfully to drag her back into mine. I finally did let go and embraced my mom as she was. Mom learned to laugh at her forgetfulness; she learned to communicate with smiles and gestures; she learned the art of living in the moment. And I learned along with her. END HERE?
Today, if I could once again sit beside her coloring, I would simply enjoy the process and not set myself up as a failed Super Muse. I might just say, “I love the brightness of that color,” and not yearn for a bouquet of roses. I might see if she and I could draw something together. Whatever we did, I would cherish that shared time.
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
How can we all stay connected with our creative spirits during the dementia journey?
I’ve been very inspired by people who are connecting both with care partners and with those living with dementia, through artistic and creative expression. I recently read this blog by Matt Stevens, a designer and illustrator based in Charlottesville, NC. Best known for his MAX100 project, 100 interpretations of the same object (the Nike sneaker). Matt has also worked on identity and branding for clients such as Pinterest, Facebook, Evernote, Dunkin’ Donuts, and the NBA. His thoughts on creativity and repetition seem applicable to the care partner’s journey.
How Rules and Repetition Inspire Creativity
For centuries, artists have been exploring the benefits of working with constraints. Bach composed the Goldberg variations — an aria and 30 variations for a harpsichord — in 1741. Picasso created an 11-lithograph series of bull illustrations in 1945. Matt Stevens reinterpreted the same object in his MAX100 project and has serialized a number of his other works as well. Great artists and designers impose constraints to inspire their creativity.
“I noticed how often I create repetition in my work – systems for myself to operate within,” Matt says. “I asked myself: Why do I create this repetition? Why do I love series so much?”
Limitations force you to be inventive and create new paths.
With Matt’s MAX100 project, he focused on a single image — the iconic Nike sneaker — and reinterpreted it 100 times.
The rules were simple: the shoe had to be in the same position on the page (it couldn’t be turned), and it had to be fundamentally changed. It wouldn’t be enough to add patterns around it: he would iterate on the shoe itself, over and over again.
“The idea is to take something, abstract and change it and let the narrow focus of the project give you a sense of freedom as you move through it. How far could I push it? How much could I abstract it?”
For Matt, this exercise led to a successful Kickstarter that turned into a book, client work with Nike themselves, plus an art exhibition in New York. #
One of the ways I tried to learn from creative limitation was exploring new ways to answers my mom’s repetitive questions. I also experimented with new ways to bring joy and creativity to our time together in the care home. Even though Matt’s tips are targeted towards the artistic community, I find them thought provoking and hope you will too.
Here are a few more ideas from Matt:
No project happens overnight. Your process for setting a project with the right limitations is important.
- Define the problem
Choose your subject and your challenge. You may be trying to understand a fellow designer’s technique. You may really just love an icon. You may want to learn a new skill. Define the problem and what you will focus on. The MAX100 project, for instance, started as a project for Matt to learn more about illustration.
- Limit your options in solving the problem
“Limited options provide clarity. And when you get stuck, sometimes the answer is not more; but it’s less.”
Impose a structure and set some rules to explore your concept. What rules will you create by? Create a baseline structure to operate within, whether that’s the medium you are trying to learn, or the logo you are trying to explore.
- Iterate, explore, learn, repeat
Don’t get stuck on the unknowns. Don’t be afraid to imitate the styles of people you admire as you go, either: these can set off their own series of explorations. Pick those apart and understand how they work. You may start to see the task in new and unexpected ways, and explore anew from there.
Remember that when you get stuck, sometimes the answer is not more, but less.
To learn more about Matt Stevens, visit
Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.
For months, I’ve been working on my book on dementia and creativity. I’ve been so inspired by all the artistic people who know so many exciting ways to connect through creativity.
My mother’s sense of creativity and playfulness thrived in her last years. But there was one other part of her that was also in full force as well. See if you can identify with this Halloween tale that I first shared last year.
Do you remember trick or treating as a kid, racing down the street, dressed as a superhero or a princess or a witch, eager for treats? When I was growing up, I loved the freedom and surprise of that holiday and I continue to love the scintillating spookiness and dramatic dress of the holiday. Here’s a story about a Halloween gift I received in a memory care unit. Click here if you’d like to watch a video of the story or read on, if you prefer the written word. Either way, I hope you’ll “treat” yourself right this October 31.
My Caregiver’s Two-Letter Halloween Treat
On my mother’s last Halloween, her memory care unit held a party. Pam, the nurse, brought a basket brimming with hats, shawls, and scarves. Pam set a floppy white hat on Mom’s silvery curls and draped a lacy purple shawl over her shoulders. In her new adornments, Mom looked both puzzled and happy.
But during the “treat” portion of the Halloween celebration, which featured M & M’s and chocolate chip cookies, Mom’s smile was unambiguous. All her life, Mom had adored sweets and her Alzheimer’s had not dimmed her enjoyment.
Then small children paraded through the facility, dressed as princesses, witches, super heroes, and ghosts. Volunteers handed the residents wrapped tootsie rolls.
“For the children,” they said.
Mom smiled at the adorable kitty cats and pirates who chanted “Trick or treat,” in wispy voices, but she did not relinquish her hold on the sweets; she did not share her candy.
“Mom, would you like to give the children some of your candy?” I asked as my mother gripped her treasure.
“No,” she said.
No. The word floated through my mind and I gazed at Mom, my mouth open, my mind euphoric. Perhaps I should have been chagrined at her selfishness but instead I was thrilled that she had actually responded to my question. It was the closest we’d come to conversation in weeks. I laughed with delight. Mom laughed.
For that moment, we were two women, laughing at ourselves, laughing at life, simply laughing. For me, it was a most wondrous and unexpected treat.
Please share one of your unexpected treats.
Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.
“I do not know what is going on, but it seems Alzheimer’s stops where creativity begins.” -Person living with Alzheimer’s disease, after creating art
I wanted to do a quick spiritual practice that was aligned with art and I asked artist, art therapist, counselor, and teacher Shelley Klammer for advice.
“Every day, you can simply draw a mandala, a circle, and color it any way you want,” she said.
I liked her idea and began drawing a circle almost daily. Then I have fun filling the inside with crayons, paints, markers, colored pencils, chalk, and pens. Sometimes I create bright designs; other times I draw childlike images—a bunny, a tree, an elephant. With each creation, I feel like I am reclaiming my love of drawing that I had set aside years ago because I “wasn’t very good at it.”
The repetition of the circle gives form to whatever art drifts out of me, just as the repetition inherent in the role of care partner holds a space for creativity.
How are you adding creativity to your every day life?
For more about Shelley and her work, please visit
“We have to continually be jumping off cliffs and developing our wings on the way down.” ― Kurt Vonnegut, If This Isn’t Nice, What Is?: Advice for the Young
“There is a vitality, a life force, an energy, a quickening that is translated through you into action, and because there is only one of you in all time, this expression is unique. And if you block it, it will never exist through any other medium and will be lost.” ― Martha Graham
Dancing is like dreaming with your feet! ~Constanze
During my mom’s dementia journey, movement often inspired and connected us. Here is one of those magical moments, excerpted from my book, Love in the land of Dementia: Finding Hope in the Caregiver’s Journey. The story is set in my mom’s memory care unit.
Rochelle, the activity director, sticks in another tape and soon Stardust is playing.
“Let’s dance,” she says, motioning everyone to stand.
Mom looks up and I offer her my hand.
“Want to dance?” I ask her.
“Want to dance?” I repeat, making a swirling motion.
“What else,” she says, standing up.
My parents have danced to this song many times, my mother coaxing my father onto the dance floor. I hold hands with Mom and move back and forth to the music. She laughs and does the same. I twirl her, and she walks around in a jaunty little circle. For a moment, her energy and charm have returned. I feel like I have found my long-lost mother. If my father were here, he would not be surprised. He is certain she will return to him and takes every word, every gesture of affection, every smile as a sign of hope.
“Hope is everything,” Dad told me just last week. “I find something hopeful and I milk it for all it’s worth. If it doesn’t work out, then I search for something else. Otherwise, I am in despair.”
I twirl my mom again. It is actually our first real dance together …
I loved my dance with my mother for the deep connection it gave me. My friend Natasha Jen Goldstein-Levitas reminds me of the other benefits of movement. Natasha is a Philadelphia, PA based Registered Dance/Movement Therapist (R-DMT) and Reiki Practitioner who does heartfelt and creative work with those living with dementia. She writes: “Among the creative arts therapy modalities, dance/movement therapy (DMT) offers the opportunity for individuals to express themselves, regardless of functional level. DMT engages the sensory systems and stimulates the physical, emotional, and cognitive areas of functioning. This movement is also a wonderful outlet for care partners.”
Samuel Beckett sums this up, He says, “Dance first. Think later. It’s the natural order.”
To read Natasha’s blog, please visit:
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
We all know that wrenching feeling of wanting to support our friends who are immersed in being care partners but not understanding how best to help. Many of us know the feeling of being exhausted care partners and not knowing just how to ask for the help we need.
Mara Botonis, author of When Caring Take Courage, created a list of meaningful tips, captured in a note to friends from a care partner. I really appreciate her empathetic yet practical outlook and wanted to share a few of her ideas with you.
The Present in the Present
I so appreciate you wanting to help me, I don’t always have time to read a book, watch a movie, or accept your generous invites to restaurant meals or spa treatments. The best gifts save me time and energy and are a treat I can enjoy at home without arranging care. I would love a visit that includes a pre-made dinner we can share. Any of these thoughtful gifts would lift my spirits: a CD with my favorite songs, a favorite dessert or snack, a chance to play a favorite game with you, a soft cuddly blanket, or fresh flowers.
Write me a note or an email. I can’t always talk on the phone or devote the time I’d like to an in-person visit. I’m usually only “free” to socialize when my loved one is sleeping and even then, I am alert to his needs. If you write to me, I can read it when I have time to truly enjoy it.
Reminisce with me. I willingly and lovingly put another person first for most parts of my every day. Sometimes I feel like big parts of me get lost so please remind me of our earlier times together. You may be the only one I get to do this with.
Please Stay in Touch
You don’t have to worry about saying or doing the right thing. I don’t always know what that is either. Please just keep trying. Don’t avoid calling or coming over because you may be feeling uncomfortable or unsure. I feel that way too sometimes and I’m here every day. Please don’t forget about me. I’m still here. I still love you. We still need and want you in our lives. Please reach out. There isn’t any way you can interact with me that would be unwelcomed or wrong. Just keep trying. #
After thirty years working in healthcare throughout the United States, Mara’s life was forever changed when a close family member was impacted by Alzheimer’s.
Please visit her website:
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
This blog is a tribute to my father, an honoring of my amazing brother, and a chance to share one of my dad’s favorite jokes. I welcome your favorite jokes and I wish you a lovely day of celebrating good fathers. Warmly, Deborah
THE JOKES ON HIM
It’s the fifties. My brother Dan and I sit opposite each other at the Formica kitchen table; my mother and father sit on each end.. We are eating Swiss steak, mashed potatoes and mushy-looking peas. My father is telling us about this sales call he had today. As he begins the story, Dan and I listen carefully. We want to see who can be the first to figure out if it’s regular boring adult conversation or a joke.
“So the man says to me,” my father says.
I screw up my mouth and nod at Dan. He nods back. It’s definitely a joke.
Some fathers like to train their kids by tossing them balls, wanting them to hone their catching and pitching skills. Dad tossed us one liners and puns, watching to see how quickly we caught on.
“My brother called the other day,” Dad would say and we all believed that Uncle Lou really had called until we were socked in the stomach with the punch line.
As we got older, Dan and I learned to keep our faces deadpan, to give my father no hope, no clue that we knew he was trying to be funny. We learned to sit still for several seconds after we had been surprised by a punch line and then, dissolve into spirited laughter if it was really funny or loud groaning if it was really terrible.
Despite all this exposure to fabulous stories, great deliveries and rollicking punch lines, neither my brother nor I are joke tellers. I like to throw spontaneous one liners into conversation, but cannot remember a long involved story. My brother has always been laid back, offering at most an occasional bon mot.
Fast forward to the nineties. We’re at a family reunion and it’s raining for the third day in a row. Twenty of us are crammed into my parents’ motel room eating a picnic lunch off drooping paper plates. My nephews squirm around, playing with various plastic weapons; my daughters and my niece sprawl languidly on one of the queen-size beds. Mom and I and a couple cousins camp on the other bed. Dan sits in a chair, reading a Richard Ford novel. My father paces in front of the television.
The noise in the room builds and my father stands still, then smoothes his shirt. I can tell from his posture that he is going to tell us a joke. My father does not silence the room. He does not have to. Dan and I are always alert for the first sign of our highest role: audience. Dan looks over at his two sons and cocks an eyebrow. I look at my daughters and nod once. They instantly quiet.
“This rain reminds me of the time I took my dog to the movies,” my father says.
Dan and I grin at each other. There is no dog in the history of our family.
“This dog was smart and loved for me to sneak him into the movies.” My father’s voice is so smooth and lulling, I almost believe this dog was part of our household. “One day I got caught and the manager made me promise to never bring that dog to the movies again. But one rainy night, I couldn’t resist.” He looks to Mom for confirmation and good sport that she is, she smiles back. “I sneak the dog into the movies. As we are leaving the theater the manager pushes his way up to me, pulls aside my jacket where the dog is hiding, and says in an accusatory voice, ‘So, how did your dog like the movie?’
‘ Oh pretty well,’ I answer. ‘But he liked the book better’.”
For a moment, the room is still. Then my nephew slaps his thigh and we all dissolve into laughter.
“And since we’re talking about dogs,” Dad says, taking his rightful place in center stage, between the television and the dresser. “Our next door neighbor has the most obnoxious dog.”
The jokes continue, each grander than the next.
Right after the one about the woman and the dry cleaners, my brother suddenly says, “I had this experience with my shoes the other day.” His voice is calm and plain. I smile, figuring the joke telling is over and we are moving into general conversation. Then I listen more carefully.
Dan tells a long and complex story– decidedly a bold mood in this charged atmosphere. My father has a patient expression on his face. My brother is articulate and calm, no histrionics, no mugging for the crowd. He may simply be telling an interesting story. I pray, “If he’s telling a joke, let him tell it well.” Dan stumbles over a word and I wring my hands. I feel like I am watching a tennis player’s first time on the court in an intense competition. I want my brother to win.
And then, Dan delivers the punch line. It’s smooth and elegant; sliding into us so unexpectedly, so easily that even Dad is caught off guard. Even Dad has that moment of hesitation and that flash of realization before he bursts into laughter and applause.
The applause dies down and my father segues right in. Dan folds his hands, content. I smile at him. I have read different accounts of coming of age. Yet here is one I have never seen before. My brother, emerging from years of quietly being in the audience, elegantly seizing the stage and then graciously giving it back. He has been heard. He has let us know, he is his father’s son.
“It’s stopped raining,” one of the boys says. “Let’s go out and play.” With a great roar, the boys take their swords and rush out to the nearby playground. The girls gather their purses and go to the quick shop for a diet drink. The cousins go off to do some shopping.
The room is quiet now, just my dad, my brother, my mom and I.
“I had no idea that you were such a great storyteller,” Dad says to my brother.
My brother shrugs. “After a while,” he says, “you catch on.”
“What is the only day of the year that commands you to go forward?”
This was the riddle printed beneath the cartoon that cradled the fragrant pink piece of Dubble Bubble chewing gum. I sucked up the sweet gum juice as I read the answer: March Forth. (March Fourth.)Then I proceeded to practice the art of blowing a bubble within a bubble. But that vital bit of gummy trivia stayed with me.
March Fourth always seems like an important date, an unsung holiday.
I tried everything in my power to encourage my first daughter, due on March 7, to emerge on that auspicious day, including taking a long walk and going on a bumpy Jeep ride. Alas, she lingered until the fifth.
Now, I celebrate the day by creating a collage that proclaims how I want to March Forth through the year. This collage may sing with travel photos or contain inspiring words or picture a best selling book or depict meaningful family relationships:I try to put my vision for my higher self on the page.
As part of this year’s March Forth, I have gathered some quotes that inspire and guide me and that I’ll be using to go forward during 2015. Here’s to Marching Forth towards living your life’s purpose.