“Thank goodness for this program,” one of our Movie and Memories’ guests told us. “There are so few places Mom and I can enjoy going together these days.”
“Thanks for this cookie. I could really use a little nurturing today,” another said.
“My goodness, I was delighted to learn about this program,” another said.
“What a treat, to have these films and these treats for free,” a couple told us.
Everyone arrived ready for movie magic. One of our volunteers from the Alzheimer’s Association brought a generous tray of cookies and brownies to share with everyone.
“How will we ever eat all those cookies?” I wondered initially. Well, it turns out, we had a large and wonderful group of sweet sweet-lovers, who thoroughly enjoyed the films and the feast.
Our three Oscar-nominated shorts met with great approval and included Glas, Joe’s Violin, and Room on a Broom. When Michelle Niedens, Director of Education and Programs at the Heart of America Alzheimer’s Association, asked us all, “Which short would you have voted for?” it was between the inspiring documentary of a Holocaust survivor giving his beloved violin to a blossoming music student and the beautifully inclusive and tender animated Room on a Broom.
Save Sunday April 8 at 2:00 for our next Movies and Memories event and join us for this meaningful dementia and family friendly film series. To make sure you know about the series, sign up for the library’s newsletter at http://www.kclibrary.org/newsletter/special-events-signup We’ll be part of the Kansas City Film Festival—visit Kansas City FilmFest to learn more about their line up. Want to help us spread the word or have an idea for a great movie to show? Just email Deborah at firstname.lastname@example.org
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.
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.”
“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
“I feel like I’ve been on extended vacation,” Ron’s father Frank said, after his first day in a memory care facility. “Today was really enjoyable.” Ron and I just melted with happiness. We had visited many facilities, with the hope of finding meaningful memory care with great activities. Frank couldn’t have said anything nicer.
It’s quite an emotional journey, finding meaningful memory care. So many of you have asked me for tips. I am re-posting the great ideas from my friend, Dr. El, Dr. Eleanor Feldman Barbera, PhD, author of The Savvy Resident’s Guide and a columnist for McKnight’s Long Term Care News.
Finding Meaningful Memory Care With Engaging Activities
“Remember, everything is an activity,” says Dr. El. She encourages care partners to seek a community with a dedicated memory care program, so people with cognitive impairments can benefit from all the offered activities.
“In a specialized unit, staff are trained to work with people who are living with dementia,” Dr. El says. “This training can help people enjoy greater independence.”
In one facility, a lady liked to wander into people’s rooms and take their jewelry. Rather than getting upset, the staff understood, framed this as “shopping,” and simply returned the jewelry.
“These kinds of insights create a calmer, slower-paced environment that reduces agitation,” says Dr. El.
Seek Structure, Soothing and Variety
Here are some things to look for, as you visit facilities:
Is there a home-like atmosphere?
Is there a structure to the day?
Are there calming activities scheduled for change of shift? Changing shift is disruptive, so some communities orchestrate a teatime with music or other soothing activities.
You’re also making sure there are a variety of activities throughout the day. These should include:
Outdoor Time: Taking people outside makes a big difference in mood, appetite, and the sense of connection to the world.
Movement: Exercise is an important component to health.
Nurturing: Look for activities that make people feel confident and good about themselves, such as spa days or activities that incorporate skills such as cooking, art, or gardening, modified to provide a “success” experience.
Engagement: Being engaged, rather than just entertained, inspires a sense of purpose, creativity, and social connection.
Kindness is Everything
“Meet with the recreational therapist,” Dr. El suggests. “Is she compassionate and caring? Are the staff members kind? You can have all the activities in the world but if they’re not done with gentleness and humanity, they won’t work.”
Let the recreation director know what your loved one likes to do and see if she can adapt the activity.
Visit as often as you can and attend activities together. Encourage friends and relatives to join you. Meet other residents and get to know the families and staff.
“You can act as a connector to create friendships, so residents engage in their own interaction, even when you aren’t there,” Dr. El says.
For more information, visit Dr. Eleanor Feldman Barbera, PhD, http://www.eldercarewithdrel.com,
Treat yourself to Dr. El’s book, The Savvy Resident’s Guide
Ron and I both love helping people create better connections in the land of dementia. We are enjoying the second year of our meaningful Movies and Memories film series. Our next free movie events (and I say “events’ because there is so much more than just sitting and watching a film) are September 10 and November 5. Please tune into Kansas City Live on KSHB-TV on Thursday, September 7 during the 10:00 hour, for additional details.
I was delighted to be featured on Mike Good’s Together in This recent podcast. Mike is a gifted interviewer, with an authentic voice and a true commitment to help people stay better connected. I so enjoyed our time together and wanted to share the interview with you.
Recently, we have been connecting through creating laughing classes for caregivers, elders, people who are living with dementia, and others. We love going around to care communities and laughing with community members, family, and staff. Our next public laughter presentation is at the Landon Center, on October 18 at noon. It’s free and open to the public. If you’re in the Kansas City area, please come laugh with us. It’s great fun!
I was honored to have a book excerpt featured on Maria Shriver’s website. Maria does amazing work and her new book, Color Your Mind, is a visual and information treat, full of inspiring ideas.
I was thrilled when a story of mine was accepted by Chicken Soup’s The Dog Really Did That? The story honors Ron’s mom, Mollie, and her love for a dog named Biscuit. If you have a chance, read my story and so many other great essays in this inspiring book.
Finally, thanks to Mary Anne Clagett of Creative Forecasting, a publication for Activities Professionals. She is featuring a review of Connecting in the Land in their November issue. The publication brims with interesting ideas for creative and meaningful activities.
There are so many ways to Create Better Connections in the Land of Dementia, and as you can see, there is power in sharing stories, laughter, and the arts.
We all want to be engaged in purposeful and fun activities. When we enrich life by adapting hobbies, we help people living with dementia stay engaged in activities that are meaningful and interesting to them.
Discover What’s Most Important
To adapt hobbies, ask yourself: What is most important about the activity?
For example, 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 the finished product or making the squares? Is it the companionship with other quilters? Or 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. You can enrich life by adapting hobbies.
Here is a story about adapting your attitude.
Embrace the New News
That Tuesday morning, she walked into the kitchen and saw her husband, relaxed in his chair, drinking his morning coffee, and reading the newspaper. He loved his morning ritual and everything was as it always had been. Except now he was holding the newspaper upside down. At first, she was upset, angry that dementia had robbed him of reading. As she battled with her feelings, he hummed, a sign he was happy and content. She took a breath and realized, she too should be happy and content.
Go for the Greens
I love this story from Mara Botoni, author of When Caring Takes Courage. Here’s how she kept her grandfather, who was living with dementia, involved in his golf game. For a time, he walked the golf course and played with empathetic friends. When he could no longer play, he liked being driven around the course, enjoying the scent of freshly mown grass, the vistas of rolling green lawns, and the thwack of a well-hit ball. Later, at home, the family set up an indoor putting green and watched golf tournaments on television with him.
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.
Connecting through reading together has always been part of my life, starting with my mother reading me Mother Goose and Grimm’s Fairy Tales. Even when Mom was living with dementia and could no longer track a Shakespearian play or a complicated novel, she loved holding books and she enjoyed hearing lyrical poetry. I was excited when I discovered the work of Anne Vize, Curriculum and education writer, instructional designer, and author of ‘Reading in the moment – activities and stories to share with adults with dementia’ published by Speechmark.
Anne graciously shared her insights for this blog.
Connecting Through Reading Together: Wisdom from Anne Vize
Why is reading together so important?
Reading is a powerful but sadly often forgotten tool for supporting people who have dementia. Sometimes people worry that they might not read fluently enough, or they might make mistakes when they read, and so avoid doing it all together. But people have been reading together throughout time, and the idea of sharing pose, poetry and stories is an integral part of who we are as people. Just because someone has dementia does not mean they are unable to benefit from the joy of sharing a moment in time, with a great book or piece of text.
How do you get started?
Start small and keep the reading sessions to around 10-15 minutes to begin with. Plan ahead so you know what you are going to read and the sort of ‘voice’ you will use to read it. Some texts are more suited to a bouncy, entertaining voice while others are better suited to a slow, lyrical, smooth reading style. Pick the one that suits the piece you are reading, as well as the one that suits who you are as a reader.
How do you set the scene?
Sometimes a sensory experience to begin with can be useful, or a brief discussion about the personal experiences of the listener that might relate to the story. You can make a link with seasonal activities such as Easter, Christmas, Passover, Independence Day or Anzac Day, but be aware that these festive or commemorative times might trigger particular memories for some people that might be unintended. Be sensitive and make sure you know a little about the piece you have chosen and the person you are reading to.
What kinds of stories/books do you suggest?
Read something you are comfortable with. Avoid texts with long, complex sentence structures or multiple characters, as these can be difficult for the person living with dementia to follow. Focus on stories you can read in a single session, with a limited number of characters, and a plot that only moves in a forwards direction (not something that jumps from one period of time to another, as sometimes happens in the short story genre).
How do you use the stories as conversation catalysts?
You can link what you read with a discussion, activity, or sensory experience, if it seems appropriate. For example, you could read the Australian bush poet Banjo Patterson and then combine this with a sensory experience looking at photos of the Australian bush, exploring plants, and leaves outdoors or listening to the sounds that horses hooves might make on the ground. If you are comfortable wearing a bush hat (called an Akubra in Australia) and a check shirt as you read some bush poetry, all the better!
How do you make the experience meaningful and fun?
Use your judgment and knowledge of the person you are reading to. Think about her needs and personal comfort and monitor how she is faring during your reading session. Think about sensory elements in the room that might interfere with your reading, such as outside noises, distractions outside the window, people moving in and out with meals or drinks, and the like. These can all take away from your reading experience.
Reading has a tendency to create a feeling of peace, calm and harmony for people and can be a trigger for more conversation and interaction. Even if the person does not recall the reading experience after you have finished, they will retain the mood and feeling that the piece has created for them and this may well last for long after the actual reading experience has ended.
To learn more about Anne, please visit, https://www.facebook.com/pg/Anne-Vize-Writing-Services-126820110730385/posts/?ref=page_internal
Reading in the Moment: Activities and Stories to Share with Adults with Dementia
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.