Psychologist Don Wendorf wrote Caregiver Carols: an Emotional, Musical Memoir to help other caregivers cope with their feelings and to help himself. Writing was cathartic for Don and it offered him insight and understanding into his caregiving journey. Don says, “I always encouraged my therapy clients to keep a journal and I have now experienced for myself just how helpful this is. The whole endeavor of creating something is very life-giving and essential.” Here are a few tips for caregivers from Don:
Take care of yourself the best you possibly can. Do as much as you can that nurtures your body, soul and mind. Exercise like a fiend. Go out with friends. Do creative stuff. Feed your faith. Avoid burnout at all costs. Seek out, accept and ask for even more help than you think you need or want.
Reach Out for Feedback and Support
Rely on people you trust to give you feedback about how you’re doing and if you’re looking burned out. They may be able to see what you can’t or won’t. Talk to other caregivers who know this path and use local or online support groups. Express your feelings to others and let them support and comfort and care for you. Man, it feels good.
Let go of perfection and forgive yourself and your caregivee when you goof up, which you ARE going to do.
Explore and Express Your Emotions
Look beneath your anger and see what layers of emotion it may be covering up: anxiety, ambivalence, fear, sadness, resentment, helplessness, hopelessness, depression, remorse, guilt, regret, loneliness, neediness. I think the biggest for me was GRIEF: I was slowly losing the love of my life. Express your feelings. There is absolutely nothing unmanly about it and you are then less likely to use anger as a blanket emotion. So, Caregiver Guys: Man Up!
Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.
“It’s really a very simple program, but the results are unbelievable. You watch the film Alive Inside and you think those are just the reactions they chose for the camera, but we really do see instant and unbelievable results from many of those we work with.” Linsey Norton
Barrick Wilson of Wichita, Kansas, uses music to connect with his beloved wife Kristi.
Kristi showed the first signs of dementia in 2004, when she was only 60 years old. She was diagnosed in 2008 and three years later, Barrick took early retirement so he could care for Kristi fulltime. There were plenty of tough times as Kristi’s disease progressed and music helped ease the issues. Often Barrick took Kristie for a ride and they’d listen to favorite songs as they tooled along.
“Bad, Bad Leroy Brown was one of her favorites,” Barrick says.
In the afternoons, they’d sit on the sofa and listen to Golden Oldies together, both singing along. Then Barrick learned about the Roth Project: Music Memories;” (which is similar to Music and Memory) and he signed Kristi up, working with the Central and Western Kansas office of the Alzheimer’s Association.
“I purchased a boxed set of Rogers and Hammerstein’s Broadway musicals, records her parents had listened to when Kristi was growing up,” Barrick says. “I included Jim Croce and Kristi’s grandmother’s favorite hymns.”
Barrick worked hard to develop a playlist that keyed in on Kristi’s emotional memories; volunteers from the Alzheimer’s Association helped load it onto an iPod. Then Barrick had the pleasure of sitting next to Kristi and reveling in her beautiful smile when she put on headphones and heard Some Enchanted Evening.
“The music is a calming influence,” Barrick says.
Kristi is one of a couple hundred people enrolled in the Roth Project through the Central and Western Kansas office of the Alzheimer’s Association.
“Our staff offers counseling services to care facilities and to families as to when and how to use the iPod, “ says Linsey Norton, the Association’s Program Director. “We also help care partners notice behavioral cues that allow them to reach for the iPod headphones instead of the anti-anxiety medication. We are working with chapters nationwide to help them develop iPod therapy programs for families in their communities.”
Music helped Kristi when she needed to transition to a memory care unit. The staff offered her headphones and her favorite songs several times a day. Kristi got up and danced when Leroy Brown came on.
Barrick is a pianist and has also incorporated the songs he used to play for Kristi when they were dating. During their courtship, he played the piano in her parents’ living room. Now he sits in the facility’s dining room, his wife by his side, and he plays I’m in the Mood for Love, If I Loved You and My Funny Valentine. These classic love songs transcend rational thought and create an engineering marvel, a bridge that connects Barrick and Kristi.
Barrick shares this advice for care partners:
- Find out as much about the disease as you can. Read, watch videos, become friends with the Alzheimer’s Association and listen to their advice.
- Take your time putting together a playlist that will trigger positive emotional memories for the person living with dementia.
- Be prepared to join the person with Alzheimer’s in her world. It’s like living in an improv theater; you don’t know what’s coming next.
- Take care of yourself. If you need help, ask for it.
Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.
Art enables us to find ourselves and lose ourselves at the same time. Thomas Merton
“Alzheimer’s is scary and art isn’t,” says Marilyn Raichle of Seattle, WA.
Marilyn’s mother Jean discovered her inner artist when she was a mere 89-years-old. Jean had never painted before: when she was growing up on a farm, art was considered childish and frivolous.
Initially, when Jean developed memory problems, she didn’t turn to art. But after Jean’s beloved husband died, Marilyn took her mom to a painting class sponsored by Elderwise, a Seattle-based non-profit that focuses on creative and spirit-centered care.
At first, Jean thought the idea was stupid. But Marilyn noticed how happy her mom was after art class. And Jean’s paintings were good. To honor her mom, Marilyn put together a calendar featuring Jean’s work. So many people commented on the delightful, whimsical quality that Marilyn knew her mother possessed a special talent. She began printing greeting cards graced with her mom’s paintings. She uses the cards to raise awareness for Alzheimer’s.
“Art is a creative way to get people to think about Alzheimer’s,” Marilyn believes. “While the prevailing narrative about dementia tends to focus on sorrow, pain, and loss, my mother’s art tells a different story. One look at her paintings and you see a mind at work, inhabiting a life of creativity, purpose, and joy.”
The Art of the Artist with Alzheimer’s
“Mom is the happiest woman I know,” Marilyn says.
Her mother has been distilled to her essence and Marilyn enjoys being with her.
“Through this dementia journey, my mom has taught me to be patient,” Marilyn says. “She’s changed how I feel about Alzheimer’s and she’s allowed me to relax and not take things so seriously. Mom is teaching me about taking joy in life.”
Marilyn wants to make the Alzheimer’s conversation life affirming, to inspire people to think creatively about senior care.
Meanwhile, though Marilyn’s had a vibrant career working in the arts and organizing arts festivals, she describes herself as a “terrible painter.” She hopes to relax enough to be able to paint with her mom.
Her mom may be an excellent artist, but she is a humble woman. When Jean is praised for her artwork, she laughs and says, “I must have gotten this talent from your father’s side of the family.”
The purpose of art is washing the dust of daily life off our souls. Pablo Picasso
Visit Marilyn’s blog: www.theartofalzheimers.net
Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.
“Art has the power to transform, to illuminate, to educate, inspire and motivate.” Harvey Fierstein
For Mary, the brief journey from her mother’s bedroom to the Memory Unit’s community area seemed endless.
“Where are we going?” her mother, Irene, asked. “I don’t want to go. I am so confused. Where are we going? I don’t want to go.”
“We’re going to look at art, Mom,” Mary said. “It’ll be fun.”
When Mary finally got her mom settled into a chair, her mother seemed to collapse inward. Irene’s head bent; her back hunched. She cocooned into herself and seemed oblivious of the other people in the circle. Even though Irene had formerly loved going to galleries and museums, she didn’t stir when the facilitator asked, “How many of you enjoy looking at art?”
Then the facilitator came right over to Irene, gently got her attention and showed her a Norman Rockwell print that featured a young boy and a dog.
Irene stared at the picture.
“What do you see?” asked the facilitator.
“I had a dog,” Irene said. “Peaches.”
“Tell us about Peaches,” the facilitator said.
“She loved to catch balls,” Irene said. “She slept with me.”
“I had a dog named Happy,” said another woman.
“My brother had a spaniel,” said a man.
“Peaches was a terrier,” Irene said.
Mary took a deep breath and smiled as her mother talked about her dog and interacted with the others. The art had invited Irene out and Irene’s conversation had invited the others out.
“Looking at art and making observations gives people living with dementia a chance to exercise their imagination and creativity,” says Susan Shifrin, PhD, Director, ARTZ Philadelphia.The ARTZ (Artists for Alzheimer’s) program, was founded by Dr. John Zeisel and Sean Caulfield, MEd.
“When commenting on art, there are no right or wrong answers,” Susan says. “People are enlivened, realizing they still have ideas to contribute.”
Prior to a museum visit, an ARTZ facilitator brings photos of familiar works of art to a care facility, noticing which photos evoke memories, emotions and conversation. The facilitator then tailors a museum visit to feature similar art.
Even galleries without a special ARTZ program can tailor visits for those who have dementia.
To create an ARTZ experience at home, choose art that:
- Speaks to the individual’s background or interests.
- Tells a story, such as Norman Rockwell prints about families and familiar situations.
- Features animals that the loved one likes.
Select art books from the library or use your own personal collection. For individuals deep into dementia, bright colors and abstract art are often appealing.
To create your own museum tour:
- If possible, ask a docent for a special guided tour.
- Choose one or two rooms that feature art appealing to your loved one.
- Choose at least one room that has a place to sit and look at the art.
- Move slowly and take your time looking at the art. Use the art as a catalyst for conversation.
A portion of this article first appeared in Natural Awakenings.
When I was in the throes of sadness following my divorce, my 12-year-old daughter came into my room and handed me a stuffed bear.
“This will help you,” she said.
At first, I had my doubts about the healing power of inanimate objects. But I soon learned that cuddling a soft bear was a calming and healing experience.
My mother created her own soothing experience when she was deep into Alzheimer’s. Here’s an excerpt from this story, from my book, Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.
A Doll of Her Own
That afternoon, while my mother is walking down the left-hand side of the corridor in the Alzheimer’s unit, tapping one hand on the handrail, and pressing the other palm on her forehead, she sees a baby doll lying on the floor. Mom’s adult diaper rustles as she bends down, picks the baby up, smoothes its curly hair and carries it with her to the dining room. There she settles in a chair and rocks the baby, talking and singing to it.
“Your mom’s fallen in love with a baby doll,” Leticia, the nurse aide, says when I visit.
Mom is sitting at the table in the small dining room, her head bent over, as if she’s fallen asleep on a long journey. I touch her shoulder once, twice and on the third time, she straightens, notices me and smiles.
I sit beside her and spread out some photographs. She is staring vacantly at a photo of her granddaughters when Leticia brings over the baby doll.
“Here you go, Frances,” Leticia says.
Mom lights up, holds out her arms and says, “You’re cute. You’re so pretty. You’re a good boy. You’re a good girl.”
I look on in amazement. I haven’t seen Mom so animated in weeks. Yet I feel a pang: I had yearned to be the one who jolted her into vivacity.
I listen as Mom continues her conversation with the baby. Maybe the ease of having someone who doesn’t talk back, who doesn’t hope you will complete a sentence, who doesn’t care if the words are missing or not right, maybe that freedom lets Mom flow with her speech.
I decide to buy my mother her own baby doll.
At the toy store, the dolls are all full of activities. One laughs when you press her belly. One has a musical bottle. Another takes your picture …
I search the aisles for a quiet doll without too many accomplishments. Finally I find a soft, rosy-cheeked baby, a good size to cradle, who boasts only an open mouth for a pacifier or bottle.
“Some little girl is going to really enjoy this doll,” the cashier says as I pay.
I smile as I envision that 87-year-old little girl who is my mother.
Mom sits in a chair in the TV room, eating strawberry ice cream out of a round cardboard container. I know better than to compete with dessert, so I wait until she has finished the last smidgen.
Then I put my hand on her shoulder. She looks at me, her eyes vacant.
“Hi, Mom,” I say. She stares at me and then she sees the baby doll.
“You’re here,” she says, her eyes widening. “My little girl is here.”
She holds out her arms and I hand her the baby.
“Bo bo bupe, tootle ootle, oop. I have my little girl,” she croons.
She smiles at me; she smiles at the doll. Does she know I’m her real little girl or is she imagining the doll as her child? At this moment, as I watch my mother come to life and praise her baby, it simply doesn’t matter.
Several years ago, we spent an evening in Zion National Park in Utah looking for shooting stars.
“There’s one,” someone said.
“I see it!” someone else said.
I saw only the regular stars, which were also gorgeous but not quite as exciting.
“I can’t see any shooting stars,” I finally confessed.
“Here’s how you spot a shooting star,” our friend Ron told me. “You soften and widen your gaze and stare off into the middle distance. You’re looking at everything and nothing. That way you’re open to that sudden flash of light and movement.”
I didn’t see the flash of light from a shooting star that evening, but I did have an idea flash. Looking for shooting stars is like inviting out creativity. You open up your focus, relax, put yourself in receiving daydreaming mode and wait for something marvelous.
Three Tips for Noticing the Stars
For me, the art of being a care partner was an exceedingly creative endeavor. Much of the time was fraught with focus, dedicated to detail. But when I remembered to soften and widen my gaze, I was able to see my mom for the star she was, even when she seemed light years away.
Here are some tips for your own personal “star-gazing:”
Sit quietly with the person who has dementia. If appropriate, hold hands.
Let go of your history and your expectations. Appreciate her just as she is.
Open your mind and heart: be receptive to whatever flashes of light may come your way.
This morning, “My Girl” is playing in my head. Yesterday’s tune was “You are my Sunshine.” Music has always woven through my life, a gift from my father, who in his earlier years, worked as a DJ at various radio stations.
Music often worked its magic with my mother during her Alzheimer’s journey. This short excerpt from my story, Bringing Magic to Life, takes place in a memory care unit.
Rochelle sticks in another tape and soon Stardust is playing.
Mom looks up and I offer her my hand.
“Want to dance?” I ask her.
“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. …
Four Ways to Inspire Melodic Moments
Dr. Glenn Smith, a board-certified clinical neuropsychologist who specializes in Alzheimer’s disease, recently wrote about Alzheimer’s and music in the Mayo Clinic newsletter. (MayoClinic.com)
“Limited research suggests that listening to music can benefit people who have Alzheimer’s disease in various ways.
For example, music can:
- Relieve stress
- Reduce anxiety and depression
- Reduce agitation
Music can also benefit caregivers by reducing anxiety, lightening the mood and providing a way to connect with loved ones who have Alzheimer’s disease — especially those who have difficulty communicating.”
Here are a few of his suggestions:
- Think about your loved one’s preferences. What kind of music does your loved one enjoy? What music evokes memories of happy times in his or her life? Involve family and friends by asking them to suggest songs or make playlists.
- Avoid overstimulation. When playing music, eliminate competing noises. Turn off the TV. Set the volume based on your loved one’s hearing ability. Opt for music that isn’t interrupted by commercials, which can cause confusion.
- Encourage movement. Help your loved one to clap along or tap his or her feet to the beat. If possible, dance with your loved one.
- Pay attention to your loved one’s response. If your loved one seems to enjoy particular songs, play them often. If your loved one reacts negatively to a particular song or type of music, choose something else.
To learn more about Dr. Glenn, visit http://www.mayoclinic.org/expert-biographies/glenn-smith-ph-d/BIO-20025110
For more about the benefits of music, read Dr. Glenn’s entire article.
To see our HERO Project that features music, visit
For me, part of being a care partner is letting go of worry and control and being open to intuition and flow. Here is a story from my life where I almost didn’t notice I was “in the flow!” Has this ever happened to you?
Opening to Answers
“Some people think it’s holding that makes one strong — sometimes it’s letting go.” -Unknown
Driving to the writer’s conference, my hands were sweating and my throat was tight. I had given workshops before, but I felt very nervous about this one. What if I had nothing to say? What if nobody learned anything? What if they looked at me with bored and indifferent eyes?
As I drove down 55th street, I thought, “You have prepared and you are going to do your best. Now it’s time to ‘let go and let God.’” I took a deep breath and felt a little better.
Then my inner worrywart boomed, “You could have tried harder, practiced more, done more research. You don’t have one original thing to say.” By the time, I pulled into the parking lot the steering wheel was damp with my sweat.
The conference was held in a mid-town church and the lobby was bustling with people.
“Your room is down the stairs and to your right,” the woman in charge told me.
I walked down the stairs and to the right. I saw a bathroom and a coat closet. I opened one door into a maintenance room, stacked with toilet paper and paper towels, brooms and mops. Then I noticed another room: tucked into an obscure corner — it was a small chapel. I walked in, taking in the serenity, the rich maroon color of the chairs, the soothing pattern of the stained glass windows. I felt calm and centered in this room. I tiptoed to the pulpit and stood behind it, like I had something holy to say.
Then I realized, I was going to be late for my class, Frantically, I retraced my steps, but I couldn’t find any room large enough for a class. I raced upstairs and found the woman again.
“I can’t find my room,” I told her. “There’s only a chapel in that area.”
“That is your room,” she said, “You’re teaching in the chapel.”
I walked back down slowly, smiling all the way.
My prayer, to let go and let God, had been answered in a most concrete way. I had almost been too busy worrying to notice.
When he was in his early eighties, my father taught me about the possible depths of his love. I knew my parents had a fine relationship but I never realized how much my father adored my mother. There was little hint of his admiration and passion in their visible every day relationship. Only after my mother sank into Alzheimer’s did my grief-worn father reveal his immeasurable love. Oh, he didn’t talk about his feelings: he was, after all, a WWII veteran and a man raised to stoically endure for the sake of his family. But he showed me his devotion every day.
“Isn’t she beautiful?” he might say to me, as we sat with mom in the nursing home’s private dining room, sharing a lunch I’d brought in: my parent’s favorite broccoli soup, half a tuna fish sandwich and a brownie.
The first time he said this, Mom wore a little fleck of mayonnaise-laden tuna on her cheek and a blob of greenish soup on her bib. Her hair was greasy—she’d been resistant to taking a bath. To me, she looked like an old crone from the fairy tales, the kind of dirty, mysterious witch who might whisper a cryptic piece of wisdom that would save your life, but who certainly wouldn’t win a beauty contest. I couldn’t yet see what my father saw.
“Your mother looks so pretty in that sweater,” my father said a couple of weeks later. We were strolling the corridors of the memory care unit. Mom was shuffling along, holding each of our arms, her head bent. My mother’s former wardrobe had gone the way of buttons and zippers and she now wore primarily sweats. I hadn’t really noticed her outfit but I stopped to look. Her pink sweatshirt echoed the blush of color in her cheeks. When she looked at me and smiled, she might have been wearing a rose chiffon evening gown: her face glowed.
“I’ve discovered a sure-fire way to make your mother smile,” my father said, when Mom was deep into the advanced stages. We were seated next to Mom’s bed, watching her twist her sheet. I scooted forward, eager for my father’s insights: my usual ways of making Mom smile were failing me and I felt bereft when she and I were unable to connect.
“Watch this,” he said and he leaned forward and gave Mom a series of light kisses on her cheek. She smiled, then she giggled, and her beauty shone so strongly that I fully understood what my father had always known: beauty is there if you’re looking with your heart.