One of the many things we love about sharing ideas and stories that connect people during the dementia journey—we never know the brilliant, witty, and amazing things our participants will say!
Let me set the scene:
It’s Thursday evening and Ron and I are presenting a program in a church basement. Our audience is a group of dedicated parishioners who serve in the Stephen Ministry, which offers help, hope, and healing. Several are reaching out to people who are living with dementia and want to learn tips for having enriching visits. As we discuss ways to assist people in adapting hobbies and activities, I invite the group to get into dyads and share a favorite hobby and some of the things they enjoy about it.
This is a lively bunch of people and they instantly start talking.Two women on the front row laugh uproariously throughout the exercise. Of course, I am curious. When the exercise is over, I ask, “What are some favorite hobbies?” One of the laughing women points to the other and says, “Would you believe, the first thing out of her mouth? She said, ‘I’m a hooker.’”
There was a bit of a nervous silence.
“A rug hooker,” the woman explains, grinning.
“I love to make hooked rugs and share with them people,” she says.
A man leans forward and looks right at her. “I’m a hooker too,” he says and pauses for dramatic effect. “I like to hook fish. Fishing relaxes me.”
The room lights up with generous laughter. Then we continue the practical matter of adapting hobbies.
So, hopefully you’re now “hooked” on this subject. Here are a few practical tips for adapting hobbies for and with those who are living with dementia.
- Discuss which hobbies are most important.
- List the components of each and learn which parts the person most enjoys.
- Adapt the experience as needed to fit changing abilities and interests.
For gardeners, is it the feel of their hands in the soil?
Is it producing flowers or harvesting vegetables?
Is it having something to take care of?
For those who like quilting, is it making the squares or the finished product? Is it the companionship with other quilters?
Or is it the texture and colors of the fabric?
For those who like cooking, is it the measuring and stirring?
Do they enjoy the aromas and textures of the ingredients?
Is it the joy of preparing something that thrills others?
Or is it the simple pleasure of tasting delicious foods?
With those answers, you can support the aspects of the activity that really resonate and enrich their lives.
Many people who live with dementia deal with social isolation. A big thank you to Nora Ellen Richard and those who are reaching out to stay connected.
An orderly group of five-year-olds walk into the dining room at Vernon Manor in Viroqua, Wisconsin. The residents are waiting for them. Each child goes up to an elder and introduces him or her self. Then Ingrid Constalie, AD-BC, CDP, Board Certified Activity Director and Certified Dementia Practitioner, talks to the assemblage about the importance of staying fit. The residents nod sagely: many of them are in their eighties and nineties and they exercise every day. But the days that the kindergartners join them are the best, a winning combination or children, exercise, and music.
The residents love teaching the kids the alphabetic movements to the iconic YMCA song. And the kids are a burst of giggles and wiggles as they fold their arms into wings, strut around, and teach everyone The Chicken Dance.
Ingrid’s focus is creating moments of joy, engagement, and connection.
Her intergenerational activities spark the residents and reduce the stigmas of aging and dementia by educating and informing local children, teens, their teachers, and other members of the community.
“This dancing and exercise exchange is simple, energizing, and very successful,” Ingrid says.
Sing-O at Bingo
Music Bingo offers middle schoolers a chance to work with Ingrid’s elders.
“This is about creating a good experience for your partners,” Ingrid coaches the children in advance. “You are their connection to the world.”
Ingrid plays an opening melody, using songs such as “Happy Trails,” “You Are My Sunshine,” and “Singing In the Rain.” Those who know the title shout it out. Often, partners confer with each other. The children help locate the song title on the bingo card and place a poker chip on each answer. Even people living with advanced dementia enjoy listening to music and being around the children.
Most of the time, the school children are chatty and at ease. But one girl was scared coming into the care community.
“I paired her with Helen, a woman deep into dementia,” Ingrid says. “Within minute, Helen had her arm around the girl and they were both laughing.”
Even children who act up at school are wonderfully behaved during the Bingo experience.
Creating Comparisons and Compassion
Recently, Ingrid orchestrated a project with a high school English class. They interviewed residents and did a comparison and a contrast. For example: “While Clara is getting out of bed with the assistance of staff, I am getting ready for school. While she wheels herself down a long hallway to a dining room, I am eating toast with my sister.”
The teenage journalists asked simple questions, like “What is your morning like?” “How do you spend your afternoon?” “How do you like to dress?”
The students wrote up the results and made booklets. One family was so inspired by the insights in the booklet, they later read parts of it at the woman’s funeral.
Ingrid’s intergenerational connections explore understanding, create empathy, and help create exciting new relationships.
Each woman would bring a batch of home-baked cookies, she wrote. We would then get to sample all the cookies and bring a bag of treats home to our families. I adored the idea of getting to bring my teenage daughters such an array of home-baked sweets. I envisioned a room filled with charming baskets of star-shaped sugar cookies, generously topped with red or green frosting. I imagined a jolly basket of Santa cookies and a fragrant ginger-scented array of reindeer cookies. I fantasized about thumbprint cookies, shaped like snowflakes and gooey with jam, and about silky buttery sandies melting in my mouth. And…
Then I realized the implication; these holiday cookies would not only need to be beautiful, creative, and delicious, they would need to be presented in festive and unusual ways. I had never really made anything other than the occasional clumpy chocolate chip, peanut butter, or oatmeal cookie. Why hadn’t my mother been a more glamorous baker, I fretted, as I rummaged in the refrigerator for something to make for dinner. She only made the plainest of cookies—date crumbs, peanut butter, and chocolate chip. As I boiled water for pasta and heated up the jar of marinara sauce, a number floated into my head and I dialed it.
“If I go to this party, will you help me with a recipe and a cute idea for presenting the cookies?” I asked my friend Judith, who was graced with five-star baking abilities.
“Of course,” she said. Judith’s aplomb would fit right in at such a gathering. Briefly, I wondered if she could attend in my place and just deliver my treats to me.
I told my daughters the good news—in several weeks we would have our own private holiday cookie festival. Since our sweets were usually made by some giant corporate entity, they were ultra-excited.
A week later, I received a thick packet in the mail. Judith had selected a number of “easy” recipes for me. I smiled as I looked over the pictures of adorable cookies with a cute holiday twist.
I frowned as I read through the baking instructions; each cookie demanded its own specialized pan, gourmet tool, thermometer, or esoteric ingredient.
As the day of the cookie party neared, I had no recipe, no cookies, no plan, and nothing good to wear.
That night at dinner, I said, “I don’t think I can go to the party.”
“Why not?” Sarah said sharply. She was thirteen and took promises and plans very seriously. Plus, she had a highly sophisticated taste for sweets and was looking forward to expanding her repertoire.
“I can’t just walk in carrying a paltry tray of blobby looking chocolate chip cookies.” My throat constricted and I wished I were a mother who could whip up a butterscotch soufflé from ingredients that just happened to be in my kitchen cabinets.
“Why not?” my older daughter Jessica said. Even during the holiday season, she kept to her black-themed wardrobe. She looked Gothic and serious as she said, “Everyone else will be all silver bells and fancy sprinkles. You will represent the good old- fashioned approach to the holidays; your simplicity will be refreshing.”
I took a breath and considered her words. If worse came to worse, I could always pretend I never saw those cookies before in my life.
That evening, my daughters and I made chocolate chip cookies and put them in a tin lined with aluminum foil. In honor of the season, I unearthed a shiny red bow to top the tin.
Walking into the party was like walking into a fairyland. Christmas lights lined the windows and a sparkling tree spread its branches into the living room. The dining room table looked like the December cover of Gourmet magazine. Stars, hearts, Christmas trees, snowmen, all the icons of the season were glowing with icing and sprinkles.
Some cookies were nestled in hand-made wreathes. Others shone from star-shaped or tree shaped boxes. A miniature set of reindeer surrounded a bejeweled fruitcake. A galaxy of colorful star-shaped cookies decorated a tiered silver-server. I admired each display while looking for a quiet corner where I could tuck in my tin of chocolate chips. I finally settled them between candy cane cookies and gingerbread Santas.
My hostess offered me champagne and the conversation flowed. Then she announced, “It’s time to gather the cookies.” She had a large silver gift sack for each of us and encouraged us to take several of each cookie. As I toured the table, I sneaked a look at my humble confection. What if no one took any? What if I had to bring the whole batch home? What if… The doubts daunted me as I filled my sack with delectables.
“Who made the chocolate chip cookies?” someone asked. The room quieted and my breath quickened. As the silence spread, I finally said, “I did.”
“What an interesting idea,” someone said.
“I never would have thought of it. It’s comforting. These cookies remind me of my mother and home.”
I smiled as I put three Santas in my sack and headed for the reindeer.
That evening my daughters and I had a magnificent holiday feast, consisting of cookies, cookies, and cookies.
“Here’s the strange thing, Mom,” Jessica said, as she leaned back, sated. “Your cookies are really just as good as any of them. Not as cute, but just as delicious.”
“More delicious,” Sarah said.
I smiled, thinking that about my mom’s cookies when I was growing up. Maybe there was something about the plain old recipes offered in the plain old way, so sturdy, so unglamorous, and yet so deliciously like coming home.
We roll into the memory care facility’s dining room just as the show is ready to start. The singer, Thelda, kicks off her shoes and presses play on the boom box. Above the cheerful sound track, she sings Jingle Bells. She dances across the room with the remnants of ballroom steps. She stops in front of Mom and sings right to her. She gets on her knees, so she can look into Mom’s eyes, and keeps singing. Mom notices her and smiles a little.
Thelda moves on, singing to each of the patients gathered around, so intent on making a connection that she often forgets the words.
“Is it all right for your Mom to come to Christmas holiday events?” the activity director had asked me, when Mom moved in.
“Yes, I’d like her to go to any activities. She likes the extra energy.”
I think Mom would approve of my decision, even though she has never celebrated Christmas. Growing up, her immigrant mother held on to the Jewish spirit of her home, kneading dough for Friday evening challah, observing each holiday and prayer period in her own way. Some orthodox women followed the religious law that commanded a small piece of the dough be burned as an offering to God. My grandmother was poor; she did not believe in burning good food, regardless of tradition. So she sacrificed a portion of the dough to her youngest daughter, my mother Fran. She created a “bread tail,” leftover dough that she baked, then smeared with butter and sprinkled with sugar . When Mom used to talk about her mother, she always mentioned this special treat.
Even when I was growing up, and we were the only Jewish family in our neighborhood, my mother still did not sing Christmas song. She let the holiday rush by her, like a large train, whooshing past and leaving her behind.
Now, I am singing Christmas carols to my Mom for the first time and she is smiling. She has moved beyond the place where the religions are different, beyond the place where she wants to separate the dough and make a sacrifice for tradition. Her new tradition is anyone who can make her smile.
With each song, from White Christmas, to Silver Bells, to Frosty the Snowman, Thelda moves back to Mom, tapping her, acting sillier and sillier. Each time, Mom lifts her head and widens her mouth for a second.
For her finale, Thelda puts on a big red nose and sings Rudolph. When she dances in front of Mom with that scarlet nose, Mom laughs, her face a miracle in pure enjoyment. I laugh too, so delighted to see Mom engaged and absorbed.
Two weeks from now, I will bring a menorah and candles into my mother’s room. My father and I will have a short Chanukah ceremony with Mom. She will pick at the shiny paper covering the Chanukah gelt (chocolate candy disguised as money). She will slump over in her chair. But she will come back to life when she sees me, her only daughter, wearing a big red nose as I light the menorah.Here’s to a meaningful and fun holiday season.
I look forward to connecting with you when I resume blogging in early January.
I named my brother Dan, our head chef, first. Then I included the support team—myself, my mom, my daughters and nephews.
“Did I help?” Mom whispered as I passed her the mashed potatoes.
“You sure did,” I told her. ”You mashed the potatoes, put the marshmallows on the sweet potato casserole, and mixed the fruit salad.”
“That’s good,” she said. “I like to help.”
Our desire to help and contribute to seasonal celebrations doesn’t end with a diagnosis of dementia. It’s lovely to linger in the kitchen together, preparing food for the holidays. It’s even lovelier when you can adapt and enjoy dementia inclusive holiday cooking so that people of varying abilities can participate.
Rebecca Katz, author of The Healthy Mind Cookbook, sees food as a great equalizer, something anyone can enjoy regardless of abilities. Fixing a delicacy for someone offers a tangible and delicious way to give back.
Here are six secrets of iementia Inclusive holiday cooking.
- Leaf through a favorite family cookbook or recipe box and use the pictures and recipes as a catalyst for conversation. Ask open-ended questions, such as, ”What does that brownie recipe make you think of?” “What do you like about the holiday season?”
- Chose a time of day when you’re both rested.
- Create a comfortable kitchen environment, by playing familiar seasonal songs you can both hum or sing along to. Reduce extraneous noise and distractions, such as a television in the background.
- If you wish, take photos during the experience. That way, you can relive the adventure and share with family and friends.
- Indulge in instant gratification, if possible, by sampling your work when the cooking is complete.
- Even if the person living with dementia can’t help prepare food, he can still enjoy sitting in on the action and the conversation.
Whether you’re stirring a pot of orzo or dropping mint leaves into cool water, enjoy your time of creation and connection in the kitchen.
A longer version of this piece originally appeared on Joan Lunden’s excellent website: Enjoy Dementia Inclusive Holiday Cooking. Thanks to Sue Fitzsimmons, MS, ARNP, Judith Fertig, author of The Memory of Lemon, Kate Pierce, LMSW, Alzheimer’s Association Greater Michigan Chapter, and Rebecca Katz, author of The Healthy Mind Cookbook
Deborah Shouse is the author of Connecting in the Land of Dementia: Creative Activities to Explore Together and Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.
Some years ago, when my mom was diagnosed with dementia, I didn’t know anyone else who was going through this journey. I felt very alone, even though I had a beautiful network of friends. I turned to writing to help me make sense of the situation. Eventually, I gathered the courage to share my personal essays with others, often through simply reading my stories aloud to friends and family. Being able to share my thoughts and feelings on this deeply meaningful dementia experience was so therapeutic, and it inspired me to reach out to other caregivers. Through my years as a family caregiver and through interviewing dozens of caregivers and experts in the field of dementia, I gleaned these 7 tips for reducing caregiver isolation.
When my friend Karen asked me to tell her more about my mom’s life, I was thrilled. I had been so immersed in my caregiving responsibilities, I had forgotten Mom’s fascinating adventures as a nurse in WWII, her worldwide travels, and more. Simply asking questions about the person who is living with dementia and listening avidly to the stories is a gift to the caregiver.
“Your mother is so interesting,” my friend Jane said. Jane had offered to simply come to my house and have a short visit with me and Mom. My mother was going through a period of repetition and I had heard her tale of the natural hot springs in Iceland at least 113 times. But watching Jane lean forward, ask cogent questions, and smile at Mom allowed me to appreciate Mom’s stories in a new way. These were cornerstones in my mother’s life and Jane’s interest reminded me what treasures they were.
Mom had been a vibrant movie-goer, an avid opera lover, and an ardent museum enthusiast. But when she could no longer go out, I loved it when people offered to bring arts, culture, and the occasional dog, to us. Studies show that even indirect contact with animals reduces stress. Visits from small dogs and cuddly babies boosted both our spirits and helped us feel connected with our community.
Bringing over an art book and gazing at favorite painters together invited out the creative spirit and were a catalyst for open-ended conversation. Singing and playing music with others stirred up positive memories and filled us with happiness and well-being.
So often, caregivers forget the power of fresh air and exercise. They forget the joy of sunshine and trees. When they don’t have the steam to set out on their own, offering to take them on a stroll, a run, to a yoga class, or just to sit on a bench in a park, can offer moments of connection and renewal.
“What can I do for you?” my life-partner often asked. Frequently, I was so overwhelmed I had no answer. So he asked me concrete questions. “Do you need any errands run?” “Would you like me to make dinner?” “Are there phone calls I can help you make? Grocery shopping I can do?” Offering to do simple tasks helped me understand I did not have to soldier through this alone. Help was all around me and one of my spiritual journeys was learning how to receive it.
It’s not always easy to stay connected with friends who are living with dementia and their caregivers, but it is so worth it. Even when my mother felt lost at social gatherings, she still enjoyed the energy of being around empathetic friends. Even when she didn’t understand every speck of conversation, she relished being around others and meeting new people. So did my father and so did I. Having friends reach out with invitations reminded us we were still part of our community.
Sometimes we don’t know what to say to our friends who are caregivers for those living with dementia. We don’t know what to do. Then it’s time to simply state the truth and tell them, “I want to be there for you, to understand what you’re going through. I want to support you, and I don’t quite know how to do it. Can you guide me?”
Chances are the answer will be a warm hug and a resounding, “Yes.”
Thanksgiving changed the year I went vegetarian. I did not mind giving up the tender, moist turkey or the savory oyster-specked stuffing. But giving up the flavorful flow of mushroom-laden gravy was quite another thing. I watched enviously as my family ladled the luscious liquids over their mashed potatoes, turkey and stuffing. As I nibbled dryly on my carrots, green beans and salad, my lower lip protruded. I felt left out and deprived.
My brother, Dan, ever alert to the pouting big sister, came up with a solution.
“Next year I will make special vegetarian gravy just for you,” Dan promised.
Years later, that special vegetarian gravy has become one of my favorite Thanksgiving rituals. I begin fantasizing about it the moment the autumn leaves turn crimson. I know that in mere weeks, my brother and his family will arrive and I will have my yearly boost of family and feasting,
When my brother calls to tell me his travel plans, I write his arrival time and GRAVY on my calendar. The night he comes to town, we make the shopping list together, avidly discussing how many pounds of mushrooms we need for both the carnivore and vegetarian pots of gravy. I relish the early-Wednesday morning trip through the grocery store, where Dan and I and our children carefully select the foods we will be making the next day. We linger in the produce aisle, filling several sacks with gleaming white mushrooms and buying rustling yellow onions.
On Thanksgiving Day, Dan and I and other family members spend long, luxurious hours cooking. Dan mans the stove and I manage the slicing and chopping. Together we snap, peal, slice and dice the vegetables that will accessorize the turkey. I take special pleasure in wiping clean and slicing the mushrooms, then bringing my brother the brimming bowlful. When he has nodded his approval, I get out the old copper pot I bought in Germany in the early seventies. This year, Dan is improving his already amazing gravy. With his new immersion blender, he creates a rich base of caramelized onions, whose flavor surpasses that of the lowly vegetable cube. He adds in a little flour, then gentles the mushrooms into the onion broth. When the pot is bubbling with thickening nectar, he says, “Taste this and see what you think.”
I always think the same thing—“Wow, this is great.”
We are in a state of giddy and satisfied exhaustion by the time our guests arrive. We share grateful prayers with everyone and lay out the feast, including plenty of turkey-based gravy for the rest of the family.
Then comes the moment I have been waiting for: I sit down, my own personal pot of gravy poised by my plate. I cover the mashed potatoes, carrots, green beans, and salad with the aromatic concoction and I savor every bite. But more importantly, I savor the bounty, creativity, and love that have gone into this simple dish. Through this gravy, my brother speaks with his hands and his heart, saying: “I care about you and I am going to make sure you are not left out and that you have something fantastic to eat.”
For that and so much more, I am thankful.
And now, if you’d like to create a Thanksgiving love story, bring home this delicious gravy.
Dan Barnett’s Chicago Style Never-Enough-Mushroom Vegetarian Gravy
2 large onions (chopped)
2 pounds (or more) white button mushrooms sliced (can add some portabellas for enhanced flavor)
1 cup of white wine (of lesser quality)
Salt & pepper to taste
To create the gravy base:
In a four -quart pot, pour a thin layer of olive oil and turn the burner on medium.
Add the onions and sauté for10-15 minutes until they are caramelized (golden brown)
Add water until the pot is about half full.
Simmer slowly for 30 minutes.
Blend the onion water mixture using either an immersion blender or by transferring the mixture to a food processor.
Once you have the gravy base
Add the 2 pounds (or more) of sliced mushrooms, white wine and fill the pot with water until it is 3/4 full.
Simmer for 30 minutes and season to taste with salt and pepper.
Deborah Shouse is the author of Connecting in the Land of Dementia: Creative Activities to Explore Together and Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.
“My husband and I have been married for 53 years,” a woman with delicately curled silver hair and mournful eyes told the group. “But in the two years since he was diagnosed with dementia, our relationship has changed.” She dabs at her eyes with a tissue and takes a breath. “It has grown even stronger. We are closer than we’ve ever been.”
Ron and I were in a conference room of caregivers in Ft. Wayne, Indiana, presenting for the Greater Indiana Chapter of the Alzheimer’s Association. We had just shared my story, Love in the Land of Dementia, and we were all talking about the gifts we have found in the dementia journey.
Another woman, whose husband was newly diagnosed, talked about her frustration and impatience before the diagnoses.
“Now that I understand what is going on, I have vowed to be more patient. I don’t want to waste a minute of our time together.”
“My husband doesn’t know who I am right now,” another woman said. “But the other day, he gave me such a compliment. He told me, ‘I want to marry you.’”
She told us how she rummaged in her cedar chest and showed her husband their marriage certificate. He read it with interest. Then he looked at her, eyes shining, and repeated, “I want to marry you.” Those words, so filled with love, lifted her spirits immeasurably. “To think that even now, when he doesn’t remember much of our lives together, he still loves me so much, that means a lot to me.”
She smiled, as we all applauded this amazing love.
We heard more stories of amazing love at our earlier presentation in Merrillville, Indiana. When we talked about the gifts and blessings we had each discovered in the dementia journey, one woman told us, “I find it an honor to take care of my mother. She has done so much for me and I am lucky to get to care for her right now. I am glad to be able to show my unconditional love for her.”
People shared many blessings—patience, the increased ability to live in the present, gratitude, flexibility, humor—but a deepening of love was the overarching message. We felt it during our own caregiving journeys, and we felt it deeply in the presence of those caregivers.
“The best and most beautiful things in this world cannot be seen or even heard, but must be felt with the heart.” Helen Keller
To learn more about the work the Greater Indiana Chapter of the Alzheimer’s Association is doing, please visit : https://www.alz.org/indiana/
This weekend we were lucky to be around a lot of heroes—the staff and grantees of The Brookdale Foundation Group, which supports national Relatives as Parents Programs, along with Group Respite programs. We loved the sense of commitment and community we felt at this event and we also enjoyed learning from other speakers and the attendees. Here are the nine great things we learned from this weekend’s conference.
Kent Karosen, President and CEO of the Fisher Center for Alzheimer’s Research, spoke about his new children’s book, Why Can’t Grandma Remember My Name? Written about the way the brain is impacted by dementia and the affects it has on children, the book is illustrated in brilliantly colorful art, created by children, juxtaposed with art by people who are living with dementia. To learn more, www.alzinfo.org
Frances Kakugawa, author of I Am Somebody, spoke of the powerful role poetry played in her caregiving role throughout her mom’s dementia journey. While scrubbing the floor after her mother’s bathroom accident, Frances thought, “There must be another poem here.” She decided to consider herself a poet-caregiver, rather than a struggling-caregiver. Reframing her image and her language helped her transform her attitude. You’ll enjoy visiting www.franceskakugawa.wordpress.com and learning more about Frances, her writing, and her many books.
Who knew you could have so much fun with poetry! Gary Glazner, for one, founder of the Alzheimer’s Poetry Project, who lead the whole group in a rousing call and response version of several popular poems. Gary added in music, movements, and stoked up our enthusiasm and our energy. We also created a poem together. You’ll enjoy using his ideas to deepen your communications and your connections. Visit www.alzpoetry.com and treat yourself to his book, Dementia Arts: Celebrating Creativity in Elder Care.
We were shocked and saddened to learn there are more than one million caregiving youth in our country, struggling to stay in school and keep afloat while taking care of ailing family members. Connie Siskowski’s organization, American Association of Caregiving Youth, provides support for these gallant middle schoolers and teens. To learn more about her program, visit www.aacy.org
How many of us take enough time to truly care for and nurture ourselves. Jane Barton, speaker, write, and listener, spoke eloquently of compassion fatigue, born of too much caring for others and not enough focus on self. We laughed, cried, and reminded ourselves of the importance of self-care. Learn more from her at www.cardinalife.com and see her book, Caregiving for the GENIUS: Understand the Journey from the Inside Out.
There were more amazing speakers, but we didn’t get to hear them because we were speaking all day Saturday, sharing two information-packed sessions of Connecting in the Land of Dementia and one session of our beloved The Hero Project. But just because we were teaching doesn’t mean we weren’t learning. Here are just a few of the tips we gathered from our participants.
As a way of adding meaning and purpose to life, one memory care day group created dog biscuits to donate to their local animal shelter. They stirred up a healthy mixture of organic ingredients, used cookie cutters, and delighted a lot of lonely pooches.
Another day care center helped a non-verbal resident create her own collage. One caring person watched carefully as this elder looked through a magazine, pausing at pictures of interest. Then the caregiver tore the photos that had intrigued the woman. Together, they glued them into a collage that the woman enjoys looking at often.
“Song titles inspire singing and conversation,” one participant told us. She shouts out familiar titles and someone in her memory care group usually sings the next couple of verses, with others joining in. This often sparks a conversation about the song.
The sense of community and generosity during the weekend reminded us again of why we love doing this work and of the importance of sharing things that work, things that don’t, and asking about things we wish we knew. Often, someone else has an answer for us, usually one of those quiet, but powerful, everyday heroes.
As the waiter served dessert, Lori La Bey looked around the table at her family and smiled. She couldn’t believe she had pulled this off — her children, her siblings and their children, and her parents all enjoying a Caribbean cruise together. Her mother was living with Alzheimer’s and her father had brain cancer: they had assumed they wouldn’t get to travel again. They were beaming and Lori knew all her planning had been worth it. She was widening the world through travel.
She still treasures the family pictures from this trip. This meaningful travel experience inspired Lori, founder and host of Alzheimer’s Speaks, to orchestrate a cruise for people who are living with dementia and their families.
“Travel is a normal part of life,” Lori says. “When you stop traveling, your world becomes smaller.”
From her years caring for her mom, Lori understands how easy it is to feel isolated and stuck. She also understands the joy of engaging in the world, trying new things, and meeting new people. Her trip enriched her family and she wants to offer others that gift of connection and adventure.
Lori also learned some tips from traveling with her parents. Here are a few ideas for creating a smooth traveling experience for yourself and for someone who is living with dementia:
Create a flexible travel experience. Lori chose cruising because it can be reasonably priced, you can unpack once and stay in the same room the entire trip, and there’s lots of flexibility with eating (including free room service), activities, and touring. Cruising is also ideal for the intergenerational experience, offering activities for all ages.
Make the person living with dementia part of planning the trip. Discuss the trip with all involved, asking for feedback and talking about what each person really wants to do. Incorporate those dreams into the trip.
Empower your travelers. Lori packed all her parents things into one giant suitcase. Her father had always been the one managing the luggage and he really wanted something to carry. “I hadn’t thought to pack a couple of small bags so he and my mom could feel like regular travelers,” Lori says. “People want something to be in charge of so they don’t feel left out.”
Work with a travel agent and make your life easier. Plan in advance for noise, long transfers, layovers, long car rides, and other chaos. If flying, call the airport if you need to arrange for wheelchairs or other inner airport transportation. To mute noises, bring earplugs. Carry along items that soothe and comfort each of us, including favorite music and head phones. If you’re cruising, talk to the cruise lines in advance, discussing special needs, including dietary, medical, and any mobility issues.
Take pictures and videos and document these precious moments. You’ll enjoy looking through these memories again and again together.
“Travel is about being together and widening your world,” Lori says. “It’s a wonderful way to build those moments of magical and meaningful connection.”
For an amazing way to widen your world, consider Lori’s upcoming November Dementia Friendly Conference and Cruise. Lori and a team of educators, including a panel of inspiring people who are living with dementia, have planned a nurturing, connecting, educational, and inspiring Caribbean trip. For more information, visit, https://alzheimersspeaks.com/cruise-with-us