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.
Throughout our journey in Vietnam, we met a number of inspiring elders. These include an 87-year-old public letter writer in the old Saigon train station, a 67-year-old woman carrying baskets of pomelos and bitter melons, a beautiful 74-year-old gardener hacking at weeds with a machete, a 100-year-old matriarch in a farming family, and an 83-year-old village chief. Because the life expectancy in Vietnam has risen over the last 20 years, its people are living longer. Along with that blessing comes an increased chance of dementia. Neurologist Trần Công Thắng. MD, and his team, Nguyen Tudny Vy and Le Thi Yen Vy, are dedicated to working with medical professionals and community members, educating on dementia.
“Many people think memory loss is just part of normal aging, ” Dr. Thang told us, when we visited him in Choray Hospital in Saigon. “We want people to understand that dementia is not a regular part of growing older—it’s a brain disease.”
Twenty years ago, few people were discussing dementia in Vietnam. But now, it’s a vital issue for two reasons. First, the country’s life expectancy has increased from age 64 to age 75. Second, many families no longer have seven or more children; they have two to three offspring. This intensifies the burden for family caregivers.
Dr. Thang is a researcher, speaker, educator, and a founding member of the Association of Vietnamese Alzheimer’s Disease and Neurocognitive Disorders. Through his classes and diagnostic clinics, Dr. Thang and his colleagues offer people much needed information and resources. He is partnering with a local rehabilitation hospital in creating a day program for those living with dementia. The program will offer cognitive stimulation and social engagement for those living with dementia.
Person by person, Dr. Thang is helping healthcare professionals understand the behaviors and issues associated with dementia. He hopes to make life better for family caregivers and their family members who have memory loss.
“Here’s some medication,” the neurologist told Mike Belleville. “See you in six months.” The doctor stood up to leave, but Mike just sat there, exhausted from months of struggle and confusion, worn ragged from all the tests and consultations. For months, Mike, age 52, had been “hiding under a rock.” His mind wasn’t working right and he worried he’d make a mistake, so he withdrew from his busy life. Now, he was numbed by the diagnosis he’d just received; younger onset Alzheimer’s.
Those three words seemed insurmountable.
“My wife and I had no connection to support services and we had no idea what to do next,” Mike says. “We felt so alone.”
Without his job as a Senior Telecommunications Technician at Verizon, his community volunteer projects, and his hobby of photography, Mike sank into a depression. After several months, his wife found a program at their Alzheimer’s Association that focused on finding a purpose and living well with dementia.
“From meeting others who had the diagnosis, I realized, I can still enjoy, do, and learn,” Mike says. “But more importantly, I realized that I have a voice. I want to use that voice for as long as I can.”
Even though he had no experience with public speaking, Mike plunged in and became an outspoken advocate, visiting Washington D.C., and speaking at a number of dementia forums.
“Somehow, I was comfortable discussing dementia,” he says. “Even when I was interviewed in front of 1300 people, I felt like I was sitting in a coffee shop, talking to a friend.”
He joined the advisory board of the Dementia Action Alliance and expanded his speaking and advocacy work.
Cooking Up New Skills
Mike was frustrated that he could no longer contribute financially to his household. So he searched for ways he could help around the house. He volunteered to do laundry and soon learned he did not “know when to fold ‘em.” Then he made a discovery: he could combine his desire to learn, his creative curiosity, his love of technology, and his desire to help through the joys of cooking.
Prior to dementia, hamburgers and hot dogs comprised Mike’s culinary repertoire: he could grill with the best of them.
“Thank goodness for Pinterest and YouTube,” Mike says. He searches for recipes on-line, then scans YouTube for a demonstration video, which he watches several times. He uses an App called Paprika, so he has the recipe in front of him. Then, Gordon Ramsey style, he lines up all his ingredients.
“Through trial and error, I learned to put away each ingredient after I added it in,” Mike says. “That way, nothing gets used more than once.”When his wife returns from work, they put the dish on the stove and cook the rest of the meal together.
“She’s very appreciative of my new talents and I’m happy to be exercising my brain and nourishing our family,” Mike says.
Putting Purpose to Technology
Early on, Mike volunteered at a local senior center, starting a technology group called, Mike’s Google Gals. Once a week, he helped people with their phones, tablets and computers. When he and his family moved, he volunteered to host a free Tech Corner on Dementia Action Alliance’s website, offering his problem solving skills as needed. He helps people get on line so they can participate in a vibrant virtual community.
“I get just as much out of this as I put into it,” Mike says. “The more I stay active, the better I am.”
Mike and his wife share an electronic calendar, so she can support him with his schedule. His vibrating smart watch offers reminders of meetings and appointments.
“Because I’m wearing the watch, I don’t have to worry about misplacing it and missing a text or an email,” Mike says.
Mike envisions home automation devices extending beyond moderating lights and temperature.
“I have an issue with anxiety,” Mike says. “I would like a wearable devise that automatically detects my anxiety. As I become more stressed, the device could turn on my TV, which would be tuned into a soothing video of my wife talking to me. Or it could turn on a calming musical playlist.”
Mike also envisions sensors that would alert his wife if he turns on the stove or walks out the front door. He would like to help develop these types of products.
Recipe for Living Well with Dementia
Mike views living with dementia as his new career.
“I’m using the same skills I honed in my earlier career,” he says.
His prescription for living well includes staying socially engaged, finding a purpose, and helping others.
At first, Mike saw his diagnosis as the end, but now he’s busy living. He has the Alzheimer’s logo tattooed on his arm with the motto, “Live life today.”
“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.
“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.”