If my mother were still alive, I would be taking her roses and chocolate this Mother’s Day. She would be delighted and her delight would magnify when my daughters and her great-grandchildren arrived. Love is such a beautiful glue, such a simple and strong way to stay connected. I wanted to share this story from Love in the Land of Dementia, as a way of celebrating our mothers.
The Woman She Was
My friend Karen gives me a gift: she says, “Tell me about your mother.”
We are sitting in a quiet mid-afternoon café and I let the question sink into me.
When friends occasionally ask me, “How is your mother doing?” I have different answers, depending on the situation. If we are in one of those conversations that are like confetti in brisk wind, I say, “She’s okay.”
If we are sitting across from each other and my friend is looking right at me, I answer, “She’s pretty deep into Alzheimer’s.”
“Does she recognize you?” she might ask.
“No, but she may recognize I am a person she likes,” I answer.
That usually ends that conversation.
But “Tell me about your mother,” is an invitation I don’t usually get.
“What would you like to know?” I ask.
She stirs her iced mocha. “Whatever you want to tell me,” she says softly. “I would like to know about her life and her interests.”
Since my mother has been in the nursing home with Alzheimer’s, I have seldom talked about the person she used to be. Occasionally my father and I reminisce about family vacations and outings. I sometimes ask Dad questions about our growing up days and the early days of their courtship. But I rarely think about the woman I knew all my life, the mother, grandmother, artist, gardener, compassionate friend, avid reader, bird-watcher, early morning walker, lemon-meringue pie baker. That woman is gone and I have spent a lot of energy learning to know and appreciate the woman who now commandeers her body.
As I consider what I want to tell Karen, I remember visiting my mom’s best friend, Bel, in California when I was a teenager. Bel, who was spunky and adventurous in a way that seemed so different from my conservative mother, drove me from Berkeley to the small resort where I would work as a chambermaid for the summer.
“Do you know how I met your mom?” she asked me, as we drove down the winding roads, past fragrant stands of eucalyptus trees.
“In Iceland, during the World War II,” I said. I had heard stories of the two of them taking a break from their work in the hospital by skiing, then stopping for a soak in a hot springs.
“No, we met earlier in Chicago. We were both nurses working the twelve-hour night shift. The hospital had a room with a couple of bunk beds so we could rest on breaks. One night I walked in there and heard the most heart-breaking sobbing. It was Frances, crying her eyes out. I asked her what was wrong and she said, ‘Nothing.’”
I smiled. That sounded like Mom, never wanting to admit anything was wrong.
“Then I asked her again and she sobbed out that her husband Sam had died six months ago from pneumonia. She was so sad she didn’t know if she could go on. A bunch of other nurses and I were going to Florida for a short vacation and I persuaded your mother to join us. But as it turned out, we never went; a week later I decided to join the Army and I encouraged her to come along. We’ve been best friends ever since.”
When I heard this story at the age of seventeen, I was too young to fathom my mother’s grief and despair. By the time I told Karen the story, I had some sense of what my mother must have gone through.
“Your Mom was really brave, to serve in the Army during wartime,” Karen says.
I feel a little swell of pride. Mom’s tales of traveling in the darkest night on the troop ship, with bombs falling nearby, were so familiar I had never considered her bravery and courage.
Now I tell Karen how my father, encouraged by Bel’s husband, wrote Mom a letter, telling her he was ready to marry a nice Jewish girl. Was she interested? Was she available?
After some correspondence, Mom surprised herself by agreeing to meet him in Chicago. At the end of the week, my father asked her to marry him. She considered the offer for three weeks and accepted. Their whirlwind romance was fueled by practicality.
“What a great story,” Karen says. “Your mother must be an amazing woman.”
Sparked by Karen’s interest, I let myself feel my love for my mother as she used to be. I am in tears by the time our conversation ends.
“Thank you for asking me about my mother,” I say to Karen.
“Your stories make me want to call my own mom and hear her stories again.”
As I drive home, I think of more “mom” stories to share with my children and my brother. I see myself, along with my brother and father, as the carrier of my mother’s sacred legacy. I imagine myself tenderly fanning the embers, adding dry leaves and crumbled paper, creating a blaze with each memory. I realize I don’t have to give up Mom’s old self: I can be her historian and her scribe, carrying her stories with me, and making sure they live on.
You know what it’s like, creating a program series for the first time. You try to think of everything, knowing that you’ve probably left something out. You hope plenty of people will attend and worry that no one will show up. The weather teases you, threatening snow or rain, thunder or wind. The “what if’s” line up, a mean group of scolders: “What if the elevator breaks? What if the speaker doesn’t show up? What if the snacks don’t arrive? What if the KC Memory Cafe doesn’t work!”
But, as most of us know, worry isn’t really that useful.
The debut of the KC Memory Cafe was beyond our highest expectations! On March 20, 2018, at 10:30 at the Plaza Library, the educators from the Kansas City Zoo showed up early, riding the elevator down to the lower level with their exotic offerings. The weather was perfect and a lovely group of 40 plus care partners and people living with dementia joined us, delighting in the delicious snacks. And they were even more delighted with the program, all of us laughing at the antics of the cockatoo, leaning forward to see the Vietnamese Tree Frog cozied in his glass aquarium, and petting the chinchilla, with a fluff of fur that felt like a cloud.
“I love this animal,” one attendee said, smiling at the blue tongued skink.
“This is the softest fur I’ve ever experienced,” said another, reveling in the chinchilla.
“That bird is so funny,” said another, laughing as the cockatoo bounced up and down, “dancing.”
After learning about the animals, we talked about our own pet memories. It was a wonderful morning and we can’t wait for our next Memory Cafe, on April 17, 2018.
Click here so you can experience the fun of the Cafe.
Want to join us on April 17 for our next Cafe? Here’s the scoop!
Weather Wonders: The Inside Story
Metereologist Karli Ritter Reveals Weather Mysteries 10:30 am on Tuesday, April 17, 2018. Plaza Library Lower Level. Join us for the KC Memory Cafe, a free event dedicated to creating educational and social experiences for people who are living with memory loss and for their care partners.
Our Team — Standing: Emily Cox, April Roy, Carol and Dennis McCurdy. Sitting: Ron Zoglin and Deborah Shouse, Jennifer Walker, Mandy Shoemaker
“We are here to see Dr. Nguyen Thanh Binh, head of the Department of Neuroloy and Alzheimer Diseaese,” I tell the guard at the National Geriatric Hospital of Vietnam in Hanoi, showing him my folded paper with her name printed on it.
He grins, then points to a full size sheet of paper in the security booth’s window with our names printed on it. We follow him into the hospital and up a flight of stairs. After a short wait, Dr. Binh warmly welcomes us into her office. She has a table ready with chairs and tells us she has invited others from her department to talk to us as well. Another Dr. Nguyen Thanh Binh arrives. Her Phd thesis was on easing the burden for family caregivers. Dr. Ngan Thi Hong Anh, doctor of rehabilitation, joins us. She seeks non-medical solutions for improving quality of life. Nguyen Ngoc Anh, RN, completes our group. She works daily, communicating with and caring for people who are living with dementia.
For two years. Dr. Binh and her team have been running a pilot study, inviting people who are living with dementia to attend a three day a week program that focuses on engaging socially, physically, emotionally, and intellectually. They use music therapy techniques, they bake traditional cakes together, and they enjoy various arts and crafts projects. All these therapies offer physical and occupational therapies, as well as vital social interactions. The project has been a huge success, with both family caregivers and people living with dementia enjoying the results. Besides giving the caregivers a much needed respite, families report improved quality of life and and increased abilities in the activities of daily living.
“Symptoms improve,” Dr. Binh reports. “Patients want to keep attending and families have their burdens eased.”
Dr. Binh and her team have extended the program.
Often people come to the hospital, seeking answers to issues related to memory loss. Many elders live at home with extended families, and their children and grandchildren are frequently confounded by their cognitive impairments and other symptoms of dementia. Dr. Binh and her associates offer education, information, and comfort. They describe the disease and try to help families move beyond their initial feelings of hopelessness. They encourage families to accept and embrace their elder and support him or her in living a meaningful life.
We left our meeting with these remarkable women feeling inspired. They are doing important work and making a difference for the people of Hanoi and Vietnam.
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.
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
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.
This year, Laurie Scherrer is taking a number of trips: Atlanta, to speak at a conference, South Carolina, for a family reunion, and the Caribbean, as a speaker and participant in a dementia-friendly cruise. Since she is living with early onset dementia, Laurie plans out her trips, taking into consideration her needs and the chaos that can be a natural part of any journey. Here are some insider dementia friendly travel tips from Laurie.
Planning for a Smooth Flight
Laurie contacts TSA and her airline, notifying them of her disability, so they can mark it on her ticket. She and her husband both paid for a TSA pass, so they can go in together. That helps her avoid the bombarding noise, distraction, and exhausting wait inherent in a long check-in line
“The TSA staff will walk you through the line,” she says.
Laurie is sensitive to noises, so the constant airport announcements, the din of hundreds of conversations, and the drone of background sounds present challenges.
“I walk into a restaurant and I hear the clanging of the dishes, the forks on the plates, the waiter’s shoes thudding against the floor,” she says. “I have lost my ability to filter sound, and those noises are as strong as any conversation I’m having.”
To minimize distraction and confusion and to help her concentrate, Laurie often wears noise-cancelling headsets.
Once in the airport, she tries to find a quiet place to sit.
“I don’t sit at the gate for two hours with a slew of people,” she says. “Sometimes a restaurant or bar is quiet. For overseas trips, you can try to get access to an airport lounge.”
She tries to get a seat towards the front of the plane, to avoid additional waiting and wading through a crush of passengers.
Packing it Up
Two weeks before a trip, Laurie organizes her clothes for each day. She puts on an outfit, then takes a picture of it.
“On the picture I write, ‘Purple shirt, black slacks, white sneakers, white socks, etc.,’” she says. “Then when I pack, I put each day’s entire outfit together, including socks and underwear. That makes getting dressed so much easier.”
At any new hotel, Laurie and her husband walk around the entire building so Laurie can get oriented. When she is traveling alone, she talks to the hotel manager, to explain her situation. At one lodge, the receptionist escorted Laurie to her room and helped her unpack. Laurie carries a tag with her name and room number on it, in case of sudden confusion.
“Don’t be afraid to ask for help,” she says.
Laurie has already planned her quiet time and her personal getaways for the upcoming cruise, where she is both a traveler and a speaker/educator.
“On cruise ships, the library is often a quiet haven,” she says.
She also avoids group shore excursions, as it is hard for her to enjoy being in a crowd.
But it’s not hard for Laurie to relish travel and to revel in engaging in new experiences and meeting new people. It just takes a little planning and a lot of taking care of herself. #
To learn more about Laurie, visit https://dementiadaze.com/about-me/
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
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.