As Director of Operations for a national call center, Paulan Gordon’s work required an intense travel schedule, detailed project management skills, and a rigorous adherence to industry standards. So when she started feeling confused, she attributed the struggles to stress. Some days, she felt so overwhelmed that she locked herself in her office and called her husband to come pick her up early.
She was asked to step down from her position. Initially, the loss of her career was both financially and emotionally staggering. Suddenly, she had no purpose, no income, and no peer group. She had to reinvent her life.
In 2012, at the age of 57, Paulan was diagnosed with vascular dementia. After a period of uncertainty, Paulan began using her interpersonal, communication, and management skills and volunteering as a mentor and a dementia advocate.
“I’ve learned there’s a lot more to life than success in business,” she says.
When she was working, Paulan was so busy she didn’t have time to build friendships. Now, through her mentoring, she has developed deep connections with others who are living with dementia.
“The relationships you create within the walls of dementia are so intimate,” Paulan says. “People talk very openly about their personal problems and challenges. I feel enriched, being part of these conversations and having such close friends.”
Her work as a dementia mentor has also given Paulan a sense of purpose.
“I work with four people and all of them appreciate my phone calls and my caring. That appreciation boosts my spirits,” she says.
Through her mentoring and advocacy work, she’s met doctors, lawyers, teachers, entrepreneurs, and others who have applied their intelligence and skills to living successfully with dementia.
Speaking out for Adaptation
When Paulan gave business speeches, her hands grew clammy and her mouth dry. She battled nervousness and worried about getting facts wrong and making errors.
“Now, I don’t get very nervous,” she says. “I’m speaking from my heart about things close to me, so I can’t make a mistake. Plus, I’m motivated: I want to help others and I want people to understand the truth about dementia.”
Letting Go of Difficulty
“You’ve asked me that question five times already,” Paulan’s husband says.
“Then it must be really important,” she answers.
Paulan is happy she can laugh at trying situations. She has let go of things she can no longer do. She stopped driving because spatial relationships were difficult for her. Paulan knows she’s forgetful and sometimes repeats herself. Her husband and family take that repetition in their stride. She’s also trained her family not to interrupt her when she’s talking, because she can easily lose track of what she was saying.
“My husband doesn’t call attention to my deficits and I forget I have them,” she says.
Proactively, he reminds her about meetings and appointments. She uses a big planner and makes detailed notes, including instructions on how to sign onto the internet, and notes on various conversations.
Changing Reading and Money
Paulan is constantly using her creativity to solve problems. She was an avid reader, but her memory retention has diminished and understanding complicated novels with dozens of characters became a challenge.
“If I put down a book, I can’t remember what happened at the beginning,” she says. “Although there is an upside to the situation: I could save money reading the same books over and over again.”
She temporarily put down her tomes and started reading short stories and magazines. This allowed her to continue her beloved hobby without so much frustration.
She also worked around her reduced mathematical abilities. When she shops, she hands the cashier an extra dollar, so she doesn’t get overwhelmed by counting out coins.
“I hope people are honest when they give me change,” she says.
Stirring up her Spirits
“I don’t worry about dying” she says. “I basically feel positive.”
Many people have a distorted view of dementia. With her speaking and writing, Paulan helps people understand the truths of the disease.
“I like sharing ways to support friends and loved ones who are living with dementia,” she says. “This information helps prevent decline and dramatically increases the well being of both care partners and people living with dementia.”
Meanwhile, Paulan’s advocacy and mentoring work has filled her life with depth, friendships, creativity, and purpose.
“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
Once again, Robert Bowles, Jr., age 65, could not sleep. Since he’d been diagnosed with Lewy Body Dementia two years ago, his nights had randomly been plagued with terrifying hallucinations and vivid nightmares that he often acted out. He was exhausted, depressed, and anxious. Plus, he had had to sell his beloved pharmacy and prematurely end a meaningful 40-year career as the community’s trusted pharmacist.
That dismal night, Robert awoke at 1:00 a.m. and dragged himself into his office. He felt a horrible heaviness in his heart
and he cried out to God.
“God,” he said, “Take me home. I don’t want my family to go through this disease. I can’t endure this any longer.”
As he sank into a chair, he heard a voice, as strong and clear as if someone was sitting right beside him: “Use your five life principles for people who are living with dementia.”
Robert slapped his hand onto his forehead and said to himself, “God is not through with me yet.”
And that realization filled him with hope.
Amending His Purpose: The Five Principles
Love, care, education, encouragement, and hope: these were the principles Robert adhered to with his work, his family, and in his community.
“Understanding that those same tenets could help families affected by dementia was a transformational experience that gave me purpose,” he says.
Robert believes, “People living with dementia need to be encouraged to maintain purpose. While your original purpose may not be possible, you can always modify your vision and continue to live with depth and meaning.”
Throughout his career, Robert was always purpose-driven and outcome-oriented. Along with those qualities, he infuses his current advocacy and mentoring work with compassion. Early on, he realized, “People don’t care what you know; they want to know what you care about.”
Standing up for Personhood
“I made a decision that I would not let dementia define who I was,” Robert says. “ I’m still Robert. I believe in personhood.”
He also believes in learning, overcoming fear, and trying new things. Robert serves on the Georgia Alzheimer’s and Related Dementias (GARD) State Plan Group. He is involved with the Lewy Body Dementia Association (LBDA) and works with the Dementia Action Alliance and the Dementia Spotlight Foundation. He qualified as a trainer at the Rosalyn Carter Institute and he completed the coursework to became a Certified Eden at Home Associate. Robert has also been trained in Dementia Beyond Drugs, which teaches ways to decrease behavioral expressions without medications.
Recently, a lady asked him, “How are you able to speak when you have dementia?”
Robert answered, “When I sit there waiting to speak, my mind is all over the place. I wonder, ‘Will I be able to speak, or is the train going to jump the track?’ Then I tell myself, “I am going to have fun.”
He has fun and he speaks from his heart. Audiences connect with him.
Recently, Robert told his neurologist, “I don’t have time to die.” Every year, he typically speaks to more than 100 groups, sharing his story, breaking down stereotypes, educating people on dementia, and inspiring people to live with heart and purpose. ##
Practical Tips from Robert
Adopt the ASAP philosophy: Acceptance, Socialization, Attitude, and Purpose. Accept your disease and know you are not your disease. Keep and expand your social network. Live with a positive attitude. Be fueled by a purpose. ASAP was one of the touchstones that delivered Robert from “the Valley of Darkness.” “Both care partners and people living with dementia benefit from ASAP concepts,” Robert says.
Prepare for your doctor’s visits. As a practicing pharmacist, Robert noticed many people did not prepare for medical visits and therefore didn’t get the information they most needed. He keeps a list of his symptoms. As changes occur, write them down. Before the visit, select your top three issues. Hand this list to the nurse to give to the doctor. “You save time and get better outcomes,” he says.
For more information about Robert, please visit:
For more information about living well with dementia, please visit Dementia Action Alliance, https://daanow.org
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.
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.”
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.
Here’s where you come in.
I’m always amazed at how a change of perspective can widen your heart and open your eyes. This is a story of how my friend helped me look at my mom in a new way and gave me me a better visit in the land of dementia.
Many weekday afternoons I stole away from my workday for a little rendezvous. I drove far into the southern part of the city.
There I hurried through the lobby, walked swiftly down the corridors and until I reached the locked door. There I punched in a secret code that allowed me into the inner sanctum, the memory care unit where my mother lived.
Walking into my mother’s room was always a surprise: I never knew who would greet me; a sweet curly-haired woman wearing a pink sweat suit and looking quietly compose? An anxious haggard woman who bent to pick up invisible lint on the floor and jabbered with invisible creatures lurking in the corners? Or an exhausted former beauty, lying across the single bed wearing an orange pullover and an adult diaper? My task was to appreciate every aspect of my complicated mother and whoever she was at the moment.
When my friend Maril asked, “Can I go with you to visit your mother?” I felt like a flutter of angels had gathered around me.
“Really?” I asked. “You want to see Mom with me?”
She did. I prepared her for our visit, describing Mom’s various moods. Maril did not seem shocked, worried or afraid. I told her about walking into the sometimes chaotic energy of the locked Alzheimer’s unit. She simply nodded as if this were an ordinary occurrence, which, for me, it was.
The day of our visit I felt lightness inside; I was eager to share my secret world with my friend.
Throughout the years, Mom has always been gracious with my friends and that day was no exception. Mom was sitting at a table in the dining room with a magazine in front of her. She looked pretty and serene and she smiled when we came in. We sat next to her and Maril took her hands.
“How are you Fran?” Maril said, looking into my mother’s eyes.
“Well I you know the scatter of it all,” my mother answered.
“I do know the scatter of it all. How are you getting along here?”
“Like a diamond in the sky,” my mother said.
As I listened to my mother and my friend talk, I was so moved.
“Your mother is really something,” Maril said as we left the home. “I enjoyed seeing her. I’d like to go again with you sometime.” I was proud of my mother’s poetic and eccentric answers, proud of the way she engaged in the conversation. And I was grateful that my friend was able to appreciate my mother, listen to her words and intuit their deeper meaning.
The visit was a huge gift for me. Seeing Maril engage with and appreciate my mom just as she was reminded me of the depths of my mother’s many talents and facets. This knowledge later helped me get through those moments when my mother seemed faraway or lost. My friend reminded me that there are so many ways to carry on a good conversation. All you need is attention, intention and love.
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.