For years, I interviewed fascinating couples every week for a column in the Kansas City Star. Talking to people who are in love is always inspiring; often couples have to overcome enormous obstacles to bring their relationship into reality. One of my favorite stories stars two friends whose love and cosmic connection shines out from their faces and rings out with their words. Here is an short version of their beautiful story, an insider’s look at true love.
The coffee date was going better than Charlie, age 60, could have ever imagined. Just a month earlier, his best friend had burst into Charlie’s dark apartment and roused Charlie from his lethargy, saying, “You need to open up these windows and let some light in. You should start dating.”
“Who would go out with a guy who has Early Onset Alzheimer’s?” Charlie asked his friend.
“Maybe you should find out,” his friend replied.
So Charlie Miller pried himself out of his depression and joined eHarmony. And this coffee date with Elizabeth Hack was the result.
Elizabeth, age 55, was brilliant, interesting, energetic, curious, and shared many of Charlie’s interests. When she asked Charlie what he liked to do, he mentioned listening to music, attending theater, visiting with friends and volunteering for the Alzheimer’s Association.
Elizabeth knew nothing about Alzheimer’s. She asked, “Does someone close to you have the disease?”
“Yes,” Charlie answered. He wanted to say more but the words stuck in his throat. He had never envisioned this casual meeting could possibly turn into a romance. Yet he was already comfortable with Elizabeth and felt their relationship was meant to be.
Over the weeks, they continued seeing each other, meeting at concerts, going to plays, and exploring new restaurants. As their friendship deepened. Charlie knew he had to share his diagnosis with Elizabeth and he worried she wouldn’t be able to accept it.
But before he had a chance to broach the subject, Elizabeth, wanting to learn more about Alzheimer’s and about Charlie’s interests, visited the local Alzheimer’s Association website and noticed a picture of Charlie, as a volunteer and a person who has Alzheimer’s. She was shocked, dismayed, and confused. But she was also in love with Charlie; his diagnosis did not diminish her deep feelings for him.
Charlie suggested she meet with his social worker at the Association to learn more about the disease. Elizabeth did that and though the information was daunting, her connection with Charlie was strong and true; she, too, felt they were destined to be together.
They began traveling and made plans to move in together. In a vineyard restaurant in Napa Valley, Charlie proposed and Elizabeth said Yes. Today, they are living happily, grateful they have found each other
“None of us know what will happen next,” Elizabeth says. “Just the other night, we were at a dinner party. One friend was just released from the hospital after heart surgery, and another friend was facing a hip replacement. I felt concerned for my friends and I felt so lucky that Charlie and I were happy and together. We are dedicated to living with joy and curiosity in the present moment.”
My mother’s Alzheimer’s drove me to write. My writing inspired me to speak. I have received enormous pleasure from connecting with people all over the world, sharing my stories from Connecting in the Land of Dementia and from Love in the Land of Dementia. Now, I’m offering you tips for sharing your caregiver’s story.
It All Started with Grief
When I initially realized the depth of my mother’s memory loss, I was shattered with grief.
Every day I went through this:
Visit with mom.
Drive home, wiping tears from my cheeks.
Stumble into the house, walk into a chair or table, and misplace my car keys.
Sit at the dining room table and stare numbly into space.
One day, during the “staring numbly” phase, my partner Ron said, “Are you writing down your feelings?” It was a smart and sensible thing to say; the sort of suggestion I might make to him in a crisis. I was, after all, a writer.
“I don’t feel like writing,” I said.
But his words stayed with me. The next day, I slightly altered my behavior.
Visit with mom.
Drive home, wiping tears from my cheeks
Stumble into the house, walk into a chair or table, and misplace my car keys
Pouring Emotions Out & Inviting Understanding In
I poured out my fears, anger, and grief. After doing this for a week,
I began noticing how interesting my visits with Mom were; we were explorers on a wild inner trek.
I started documenting our time together, sometimes even taking notes during my visits. I wrote about the challenges, humor and blessings. I wrote about my conversations with my father, with friends and family and with the aides, the nurses, the social workers. As I wrote, I saw there was much hope, promise and energy in my new world.
As I shared my work with friends and family, I realized I was chronicling my mom’s last years and capturing part of our family history.
Sharing Your Caregiver’s Story
How do you take a challenging part of your life and bring it to the page? Here are a few simple tips:
Give yourself time to feel your emotions, whether it’s through writing, art, music or other expressive arts. Writing down your feelings helps you understand the depth of what you’re going through. For me, writing helped change my fear into curiosity.
Notice the Details
Write down the particulars, noting simple concrete facts. You are a researcher collecting data.
Uncover the True Story
Look for the universal meaning in your specific experience. How have you changed? How will the reader change through reading your words?
Ask for Feedback
Read the story aloud to someone and see how it sounds. What’s working and what’s missing? Ask colleagues for a professional critique. Think over their advice and decide what is right for you.
Celebrate your Accomplishment
Sharing your caregiver’s story takes courage. Yet, for me, it is one of the most cathartic and meaningful things I do.
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.
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.
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
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
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.
“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
“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.
“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:
Ever wish you could have an instant jolt of muscle and energy like Popeye did when he gulped down his can of vitamin-rich spinach? I asked renowned cookbook and fiction author Judith Fertig for some easy and healthy boosts of energy for worn out care partners. Judith agreed to share a few of her favorite smoothie recipes. They’re quick, refreshing, nutritious, and delicious. Warning: if you drink your smoothie while reading Judith’s wonderful new book, The Cake Therapist, you may need a moist, chocolatey piece of cake later in the day. Maybe one of your friends will treat you to a recipe from Judith’s other new book, Bake Happy.
Judith’s Secrets for Succulent Smoothies
Smoothies can be a caregiver’s caregiver. These blended drinks offer big nutrition in a small package, can be made in minutes, and make us feel like we’re doing something good for ourselves.
The best way to mix a smoothie is to start with either a liquid or an ingredient with a thicker consistency, like yogurt, placed in a blender or high-powered smoothie mixer. Next, add the desired fruits or vegetables and flavorings. It’s better to start on a slower speed while holding down the lid tightly. Once everything is blended, increase the speed to high to achieve a more velvety texture. If the smoothie is too thin, add more frozen fruit or ice.
Smooth-fleshed fruits like mangoes, bananas, ripe peaches and nectarines blend more easily to a silky finish than do fresh berries. Tender, baby greens such as spinach, kale or chard virtually disappear within a smoothie; if using mature, rather than baby greens, cut out the stems unless the blender or mixer is extremely powerful.
Blending enough ingredients for two smoothies can yield a leftover serving to store in a covered glass jar in the refrigerator. To reactivate the full taste later, just turn over the jar and give it a good shake to re-blend the ingredients.
Yields 2 servings
2 cups water
4 cups baby spinach
2 cups chopped butter lettuce, escarole, or romaine
1 large banana, cut into chunks
The juice of a lemon
Combine the water, spinach, lettuce, and banana and blend using low to high speeds until smooth. Add lemon juice and blend again.
Yields 2 servings
2-3 cups watermelon, seeded
1 cup low-fat vanilla-flavored dairy or coconut yogurt
1 cup frozen strawberries
1 fresh peach, peeled, pitted, cut into chunks and frozen
Combine all ingredients and blend from low to high speed until smooth.
Cool as a Cucumber Smoothie
Yields 2 servings
1 cup apple juice
1 cup sliced sweet apple
¼ cup applesauce
½ cup sliced carrots
½ cup cucumber, peeled and sliced
2 cups ice
Dash of nutmeg or cinnamon (optional)
Combine all ingredients and blend from low to high speed until smooth.
For more great gourmet ideas, visit Judith’s website: www.alfrescofoodandlifestyle.blogspot.com/