I’ve been thinking about Michelle’s ideas, inviting us all to be part of creating a more-dementia friendly community. Here are additional thoughts from Michelle Niedens, L.S.C.S.W. Director of Education, Programs and Public Policy, at the Alzheimer’s Association’s Heart of America Chapter.
What volunteers would walk with their neighbors who were living with Alzheimer’s disease, so they could exercise and visit with others, without worrying about getting lost?
What if neighbors volunteered to visit regularly or run an errand?
What if law enforcement went beyond Silver Alerts and had standardized protocol for individuals who wander and go missing?
What if gas stations and convenience stores had training to recognize someone who might be lost?
What if pharmacies provided support information any time an Alzheimer’s drug was prescribed?
What if doctor’s offices had “memory aware” time slots, so people living with dementia wouldn’t have to wait in a noisy, chaotic environment?
What if there were geriatric urgent care settings?
What if grocery stores had a “slow down” line?
What if grocery stores had designated times when shopping support was available?
What would it take for all of us to be “memory aware” and to act on that?
I want to do something to help here in Kansas City, but I haven’t yet decided what. In my upcoming book, Staying Connected in the Land of Dementia, I write about Meet Me at the Movies & Make Memories, a movie-going event for those living with dementia and their partners, co-created by John Zeisel. That really appeals to me and I’m thinking about contacting local theater owners. I welcome collaborators and I also would love to hear your ideas. What actions are you inspired to take?
Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.
On November 10, 2015, Michelle Niedens, L.S.C.S.W. Director of Education, Programs and Public Policy, at the Alzheimer’s Association’s Heart of America Chapter, gave a beautiful talk, inviting all of us to contribute to a compassionate, inclusive, and dementia-friendly community. Her ideas are both simple and profound and offer a challenge and an invitation for all of us. Over the next two weeks, I’m going to share some of Michelle’s visionary “what if” thinking.
What would it take for all of us to be memory aware and to act on that?
What if restaurants had finger food menus? What if restaurants had specials from the finger food menu in the middle of the afternoon, when there were fewer people in the restaurant and things were quieter?
What if theatres had showings designed “memory aware”?
What if theatres had showings of old movies monthly with the “memory aware” icon on the website, so families could still enjoy getting out and having the cinema experience?
What if radio stations played songs related to memory issues in November (Alzheimer’s month) or April (Caregiver month)?
What if retail stores had designated days when the staff wore “memory aware” name badges and could provide more support to shoppers?
What if technology-based stores had annual displays of products that support memory, safety, or organization?
What if faith communities identified in bulletins/newsletters those activities that were “memory aware?”
Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.
We all know that wrenching feeling of wanting to support our friends who are immersed in being care partners but not understanding how best to help. Many of us know the feeling of being exhausted care partners and not knowing just how to ask for the help we need.
Mara Botonis, author of When Caring Take Courage, created a list of meaningful tips, captured in a note to friends from a care partner. I really appreciate her empathetic yet practical outlook and wanted to share a few of her ideas with you.
The Present in the Present
I so appreciate you wanting to help me, I don’t always have time to read a book, watch a movie, or accept your generous invites to restaurant meals or spa treatments. The best gifts save me time and energy and are a treat I can enjoy at home without arranging care. I would love a visit that includes a pre-made dinner we can share. Any of these thoughtful gifts would lift my spirits: a CD with my favorite songs, a favorite dessert or snack, a chance to play a favorite game with you, a soft cuddly blanket, or fresh flowers.
Write me a note or an email. I can’t always talk on the phone or devote the time I’d like to an in-person visit. I’m usually only “free” to socialize when my loved one is sleeping and even then, I am alert to his needs. If you write to me, I can read it when I have time to truly enjoy it.
Reminisce with me. I willingly and lovingly put another person first for most parts of my every day. Sometimes I feel like big parts of me get lost so please remind me of our earlier times together. You may be the only one I get to do this with.
Please Stay in Touch
You don’t have to worry about saying or doing the right thing. I don’t always know what that is either. Please just keep trying. Don’t avoid calling or coming over because you may be feeling uncomfortable or unsure. I feel that way too sometimes and I’m here every day. Please don’t forget about me. I’m still here. I still love you. We still need and want you in our lives. Please reach out. There isn’t any way you can interact with me that would be unwelcomed or wrong. Just keep trying. #
After thirty years working in healthcare throughout the United States, Mara’s life was forever changed when a close family member was impacted by Alzheimer’s.
Please visit her website:
Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.
I woke up in the middle of the night with the answer I’d been seeking: I would self-publish the book of essays I had written about my journey through my mother’s Alzheimer’s and I would donate all the monies from the book to Alzheimer’s research and programs.
It was the summer of 2006, and for weeks I’d been wrestling with a question:
Should I seek a traditional publisher or independently produce the book? Both seemed daunting; in the past, I had primarily written books for and with other people and publication wasn’t my problem. But this book, Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey, was the work of my heart, born out of my desire to stay connected with my mother and find the joys and blessings in her experiences with Alzheimer’s. I wanted to share my stories of hope so they might help other caregivers.
“What about donating a portion of the proceeds?” my partner Ron asked. I was already making a marginal living; Ron’s suggestion was practical but I shook my head.
“I think I’m supposed to donate it all,” I told him. “That way, instead of selling a book, I’ll be raising money for a cause I’m passionate about.”
I talked through the details, consulting knowledgeable friends, an attorney and our local Alzheimer’s Association. My mission: to use the book as a catalyst to raise $50,000 for Alzheimer’s. There was one glitch; I estimated the cost of designing and printing could be in the thousands. Where would I get the money? But even though I was often worried about funds, this hurdle didn’t bother me. My intuition was strong. I was supposed to do this and would raid my savings if needed. Ron was excited about the project and pledged to work with me and help me make it happen.
“We will also help you,” my friends Rex and Jane said. They had shepherded several books through production and were extremely savvy. Plus, they wanted to be part of my mission.
Over the next months, Ron and I spent hours with Rex and Jane, working on design, cover, production and print details. Endlessly patient, they were dedicated to creating the book I envisioned. And they kept their fees to a minimum.
When the finished product arrived months later, I felt a sense of pride and completion. The beautiful cover featured one of my mother’s paintings, the type was easy to read, the interior design inviting.
Ron and I had often performed my stories together, and we began speaking and sharing stories from the book with Alzheimer’s associations, healthcare professionals, caregivers’ groups and others. When we traveled, we reached out to Alzheimer’s groups to set up speaking engagements. We were always moved and inspired by the people we met.
“The person with Alzheimer’s is the pupil in God’s eye,” the priest in a fourteenth-century church in Florence, Italy told us.
“Your story is my story,” a man in Istanbul, Turkey said.
“I’ve been caring for my mother for ten years,” a woman from Brooklyn, New York said. “It has been the most meaningful experience in my life.”
“When I learned Mama had dementia, I quit my job in Houston and moved back home,” a woman in St. Thomas, Virgin Islands said. “I wanted my children to know their grandmother in all the stages of her life and I wanted to be here to care for her.”
Sometimes we spoke in front of hundreds of people; other times we talked to groups of ten. When possible, we brought books and people often donated more than the suggested fifteen-dollar price, knowing that all the proceeds went to Alzheimer’s research and programs.
By 2011 we had done it! We had raised $50,000 for Alzheimer’s. But we kept going; we were still learning and growing. The work was healing for both of us and we loved connecting with other caregivers.
In 2012 I was ready to give the book a wider distribution and reached out to Central Recovery Press. They published an enhanced edition in 2013. Today, our fundraising journey continues as we donate a portion of our proceeds to this important cause.
The self-published version of Love in the Land of Dementia served as a catalyst for raising more than $80,000 for Alzheimer’s programs and research. My stories of looking for the blessings in the journey reached thousands of people, fulfilling my goal of making a contribution to the world. And the bonus was that both Ron and I had changed.
By following our intuition and doing the work of our hearts, we became more compassionate, understanding and trusting.
by Deborah Shouse
I have to say, I wasn’t really in the mood to read a memoir about the Alzheimer’s journey. But a friend recommended The Long Hello and I sat down to leaf through it. Four hours later, after both tears and laughter, I had completed the lyrical journey, an artful weaving of rational recall and poetic pouring. I could see and feel Cathie Borrie, the author, and I felt I knew her fanciful, magical, distracted, needy, exhausting, interesting mom. Cathie’s honesty and her ability to capture the intricate connections inherent in this dementia journey were like walking a familiar road through a mysterious jungle. This book is a burst of beautiful writing anchored by deep poignancy and meaning.
I also really enjoyed Martha Stettinius’ Inside the Dementia Epidemic: A Daughter’s Memoir. Meeting Martha and her mom on the pages of her searching memoir was like rediscovering old friends. I identified with Martha and I was also caught up in her story. I was moved by her struggle to truly care for and take care of her mother, while still preserving her soul and her family life. Martha did a great job of creating a compelling and readable story, while offering a wealth of practical tips and resources.
Several weeks ago, I wrote about my first visit to an Eden alternative home, the magical Sierra Vista in Santa Fe. The founder of Eden Alternative is Dr. Bill Thomas, who is one of the pioneers in making dementia care more home-like and person centered. His book, Life Worth Living: How Someone You Love Can Still Enjoy Life in a Nursing Home – The Eden Alternative in Action, is rich with ideas for care facilities. Home care partners can use his concepts to make their household even more creative and welcoming. As a bonus, Atul Gawande wrote about Dr. Thomas, in his fascinating book, Being Mortal. You’ll be inspired by Dr. Thomas’s innovation and his tenacity.
It’s not often that you read a book about dementia care and laugh. But when Mara Botonis wrote about carefully laying out supplies for a creative arts project, only to have her loved one staring out the window, then studiously plucking lint from his sweatpants, I had to laugh. I could see my beautiful mom doing exactly the same thing. Mara’s book, When Caring Takes Courage: A Compassionate, Interactive Guide for Alzheimer’s and Dementia Caregivers, is all about making the most of our moments together. Mara knows about dementia from her career in senior living and she has taken the personal dementia journey with her beloved grandfather. She orchestrated the book to make it easy for the exhausted care partner to problem solve and get instant help. She offers activities and projects for a range of abilities and situations.
What books are spurring you onward these days? I’m immersed in writing my new book, tentatively titled Creativity in the Land of Dementia, so I’m focused on the topic in all its forms. The great news is that there are so many amazingly imaginative people out there, making the world a more connective and creative place for those living with dementia, their care partners, family, and friends. Which means, making the world better for all of us.
The thoughts creep in, quietly, sneakily, like Sandburg’s fog “on little cat feet.” I walk into the living room and puzzlement seizes me. I ask myself, “Now why am I here?” I am writing to my cousin and suddenly can’t remember his life partner’s last name. And then there’s the mysterious case of the forest green shirt in the night, gone missing now for four and a half weeks.
Perhaps you, too, deal with these flash thoughts: “Am I feeling the first confusions of the deeply forgetful?” (That’s the beautiful way Stephen G. Post, PhD, refers to memory loss.)
“If I should become more deeply forgetful, I want to be sure you read this book,” I tell Ron.
“This book” is I’m Still Here by John Zeisel, PhD, and I felt enveloped with grace, compassion, and excitement while I was reading it. John is the president and cofounder of Hearthstone Alzheimer Care, and a writer, professor, and vigilant advocate for those living with dementia.
He writes about how he’s been transformed by working with people living with dementia. He orchestrates care partner conversations, where they discuss the gifts of being present for their loved ones with dementia. He’s brimming with creative ideas and activities that bring life and fun to care partners.
With his colleague, Sean Caulfield, he drew into existence the Meet Me at MOMA arts program for those living with dementia, and now offers a variety of artistic and creative programs all over the world. He’s involved in a number of other innovative programs through his foundation, including It Takes a Village, designed to keep people living with dementia connected to their communities and to themselves.
Here is one of John’s thoughts that really speaks to me: “Everyone has his own unique capabilities. … It is our job to uncover, celebrate, and embrace these abilities, so everyone living with Alzheimer’s maintains dignity, independence, and self respect.”
Those words are easily just as true if they read: “Everyone has his own unique capabilities. … It is our job to uncover, celebrate, and embrace these abilities, so everyone maintains dignity, independence, and self respect.”
If you want to feel more connected to someone who’s living with dementia, if you want to celebrate yourself as a care partner, if you want to understand more about the dementia experience, if you want a dash of inspiration and a long cool drink of hope, you’ll love reading this book.
To Learn More about The I’m Still Here Foundation’s programs, visit www.ImStillHere.org
To Learn More about Hearthstone Alzheimer Care, visit www.TheHearth.org
To learn more about John, just Google his name
To order John’s book, visit Amazon.com or another online bookstore
“Dementia has brought me back to who I was to begin with. I’m more self confident in myself. I feel an intensity in the moment that I didn’t have before.” Richard Taylor, PhD.
Before he was diagnosed with dementia, Richard was a professor of psychology. At age 62, he was a popular lecturer, witty, well read, with an easy manner and a welcoming charm. But when he was diagnosed with dementia, Richard lost his professional standing, his job, his driver’s license, his confidence, and his optimism. He found himself crying ceaselessly, not really understanding why.
“I didn’t even know anything about dementia,” Richard says. “I had fears about losing control of myself. I thought the transition from one stage to another was abrupt, that a curtain would drop and suddenly I wouldn’t know the world and the world wouldn’t know me.”
To stem these fears, Richard began to write daily, capturing these thoughts and activities: he was, after all, a psychologist and used to analyzing things. Every morning, he read his previous day’s writings.
After he had accumulated a year’s worth of writing, he read some excerpts to the members of his Early Onset support group.
His group identified with his fears and feelings and urged him to take his pages down to the caregiver’s support room and slide them under the door. Richard did.
After both meetings ended, some of the care partners sought out Richard to thank him for sharing his feelings and insights. Months later, someone from Health Professionals Press called and asked if they could publish Richard’s writings. His book was titled Alzheimer’s from the Inside Out.
Turning into an Advocate and Speaker
He was invited to read parts of the book.
“My introductions to my readings got longer and longer,” Richard says. “I wanted to share my dementia story, so I talked about my life and what it felt like. I’ve always felt people with dementia are the only true experts on the subject. You can imagine you’re blind, but you can’t imagine you have dementia. Dementia is so individualized as to how each person expresses it. Our brains each have different strategies.”
Soon people were paying Richard to share his insights at conferences and conventions and his speaking career began.
He starts his presentations by saying, “My name is Richard and I am living with the symptoms of dementia.”
But Richard didn’t confine his advocacy to speaking. He also worked with the Houston Art Museum and the Metropolitan Museum of Modern Art to bring an art program for people with dementia to the gallery. Richard traveled to MOMA, learned about the program, worked with the Houston docents, and was a catalyst for bringing the program to the Houston community.
Understanding the Loss and Lack of Meaning
Imagine losing your job, your car and your sense of passion and purpose. You feel you’ll never again do the activities you love, make new friends or try new hobbies. Your life is static and boring and you feel out of place and alienated, even in your own home.
Richard believes many with dementia prematurely talk themselves into a wheelchair and into not communicating. They give up. He understands the loneliness and despair that can overtake someone living with dementia.
“Strangers start hugging and kissing you and talk louder to you and never ask for your opinion and are more effusive in their positive emotions with you. After a while, you just go along. So when people say, ‘How are you doing honey?’ I say, ‘I’m doing fine.’”
Reigniting His Purpose
Richard hopes his personal stories will inspire care partners to look for opportunities to bring more joy, connection, and satisfaction into life. He understands how important it is to feel a sense of purpose. As a debater, a professor, and a raconteur, Richard has always defined himself through his speaking and writing.
“Through my speaking and advocacy, I have reignited my sense of meaning,” Richard says. “People clap when I talk and this reassures me.”
Part of Richard’s purpose is helping care partners see their loved ones as whole and complete. He writes, “Just because my memory sometimes fails me, just because my cognitive abilities seem to slip…please know that in my own heart and mind, I am still me. I am not becoming any less a person simply because I cannot remember like you, talk like you do, or think as you do. I am still Grandpa, and Dad, a friend.”
Richard believes, “Dementia is about living a purposeful and purpose-filled life, not dying from its causes.”
When talking with someone who has dementia, Richard has this advice:
- When greeting someone who has dementia, say, “Hello, it’s me, Deborah.” Then pause, allowing time for a response.
- If you don’t know how to act or what to say when you’re visiting a friend with dementia, try to learn more about what your friend is experiencing. You might ask, “What have you learned from living with dementia?” Or, “What changes are you having to cope with?” Or, “How can I make our time together more meaningful?
- See the person as a whole human being.
- Look for opportunities to add autonomy, purpose, and adventure to the person’s life.
Thanks to Lori La Bey for sharing my article about Richard with her readers.
Please visit her site https://www.alzheimersspeaks.com
for more information about Richard, including an interview with Lori.
Lori’s site, blog, and radio program feature inspiring people who are working for and with those living with dementia.
Alzheimer’s is a democratic disease and no one is immune. Movie stars, politicians, bankers, comedians, business moguls, professors, and homemakers– any one of us could face living with dementia. Karen Love is a founder of the Dementia Action Alliance, which focuses on improving dementia care for the more than five million Americans currently living with the condition. Karen works with governmental agencies to define and improve a person-centered standard of care for elders and for those living with dementia. She’s an inspiring leader and I wanted to share some of her insights with you.
Q and A
Q: What prompted you to form a non-profit and become an advocate for aging and for those living with dementia?
A: Advocacy must be in my DNA. Even as a girl, I was always sticking up for people and their rights. I initially worked as an administrator in assisted living and I became concerned about how fast the industry was growing without paying attention to the needs of its vulnerable residents, particularly those who had dementia. In 1996, I founded a non-profit organization, Consumer Consortium for Assisted Living (CCAL), to advocate for, support and educate consumers about assisted living. After a decade, we renamed the organization CCAL—Advancing Person-Centered Living, and we expanded our mission to encompass all elder care settings. We focused on promoting quality of life and person-centered practices.
Q: You’ve worked with Medicaid and Medicare to help define and implement a mind-set of person-centered care. What does person-centered care mean and why is it so important?
A: The World Health Organization and the Institute on Medicine recognize Person-Centered practices as the gold standard. Person-centered practices support people’s emotional, social, physical, and spiritual well being. They focus on treating people with dignity, fostering choice, independence, and feelings of purpose, value, and self-worth. These practices also help people maintain normalcy in their daily life. I’ve had the honor to help shape the person-centered framework for CMS’s home and community-based division, which support such state-based services as home care, adult day, and assisted living for individuals Medicaid eligible.
Q: You’ve now gathered thought leaders in the fields of aging and dementia, building a coalition of people dedicated to “making dementia better” in our country. What are some of your goals?
A: Our goals include:
- Enhance knowledge about dementia and person-centered care practices so people living with dementia are no longer stigmatized.
- Improve healthcare practitioners’ understanding and knowledge about dementia care, person-centered practices and treatment, and make sure materials are accessible.
- Share information with care partners and healthcare providers about the value of attending to emotional, social, and spiritual well being.
- Increase federal and state funding for dementia-care related support.
Q: What are some inspiring actions that ordinary caregivers or persons living with dementia have taken?
A: Just a couple of examples include:
- Michael Ellenbogen is a person who is living with dementia. Prior to being diagnosed, he was a high-level bank executive. He has become a tireless advocate and spokesperson for dementia.
- Lori La Bey started an online weekly radio program called “Alzheimer’s Speaks” to provide a venue for people to learn about dementia, share their experiences, and be supportive.
Q: What are three easy things each person can do to act as an advocate for those living with dementia?
A: Here are some suggestions:
- There are three ways things change nationally: (1) the President makes it happen (2) Congress makes it happen (3) the groundswell of people’s voices and actions make it happen. There has not been an interest for the first two methods. Historically, method 3 was effective for impacting and changing issues such as HIV/AIDS and breast cancer. The Dementia Action Alliance brings people together so we can be a catalyst for change.
- Words matter. Often people living with dementia, including Alzheimer’s, are called “patient,” “victim,” “demented,” and “sufferer” – and the condition is called a “dementing illness” and an “affliction.” This type of language can impact how people living with dementia feel about themselves and how they are treated by others. Print out “Use Words Wisely” from the website – www.daanow.org/words-matter/- and help educate others about what words to use.
- Email the Dementia Action Alliance at email@example.com about your interest in volunteering. Consider making a financial donation at www.daanow.org The more people involved in the Dementia Action Alliance, the sooner and greater the impact.
Please feel free to share this information with your friends and colleagues. The more we all work together, the more effective our voices will be.
Most people would have been stressed out by the constantly changing technology, the large territory, and the escalating demands of working as a high-level data center manager. Michael Ellenbogen thrived on the challenges.
“I didn’t feel the stress; I loved constantly learning and I became the go-to-problem solving person in my organization,” he says.
By his mid-thirties, Michael had a wonderful wife and daughter, a nice house, a boat, and a rewarding and stimulating career.
Then, at age 39, he realized that something was wrong. He’d forget meetings, dashing in minutes late, claiming a crisis. He’d look at an employee and blank on her name. When people threw around familiar industry acronyms, Michael couldn’t remember what the letters stood for.
“Just part of everyday stress,” his colleagues assured him, when he mentioned these lapses.
But the aberrations were disturbing and Michael went to his doctor. “Stressed,” his doctor said.
Through the next years, Michael fervently sought answers but received only platitudes.
In 2003, when he was 45-years-old, he was terminated. He applied for another job, a high-level manager’s position. But the interviewer asked him a math question and Michael didn’t know the answer.
“I’d done budgets of millions but I couldn’t come up with the number,” Michael says. “Luckily, an old boss gave me a chance at a consulting job.”
Michael studiously took notes, trying to learn the job. He worked diligently, putting in grueling hours, but he wasn’t meeting his quota. And it was exhausting, trying to hide his problems from those working with him.
Again, he sought medical information. Finally after an MRI, a PET scan, and batteries of tests, Michael, then age 49, was diagnosed with Mild Cognitive Impairment/Alzheimer’s Disease.
“That moment changed my life,” Michael said.
Having a diagnosis brought some relief. But when he learned more about Alzheimer’s, he was initially devastated, understanding there was no cure. His natural resilience soon surfaced and he embraced the philosophy, “Don’t worry about something you can’t change.”
So often, the disease isolates people, but Michael is determined to stay active, engaged, and make a difference.
“People living with dementia need a purpose,” he says.
Michael’s purpose is strong and clear: he works long days, educating, connecting, and advocating. He serves on five advisory boards and regularly speaks out on radio and television. He’s testified in front of Congress and communicated with both Congress and the Senate. He’s working with AARP and helping a hospital become dementia-friendly.
“Many in our society think Alzheimer’s is a part of normal aging. But it’s a disease, not the norm and we need to treat dementia as fairly as we treat other diseases,” Michael says. “NIH contributes 18.7% to cancer, 9.9% to HIV and only 1.5% to Alzheimer’s. This is an injustice.”
What the business world lost, those living with dementia have gained. Michael is a hard-hitting, vocal, and determined, strategist, dedicated to improving the lives of those living with dementia. ###
How can you help Michael and others living with dementia?
Michael advises: “Mail a letter to senators and congressman, sharing the story of someone who has dementia, so they can understand the devastation factor behind this disease.”
Visit Michael’s website: www.MichaelEllenbogenMovement.com
Read his book: From the Corner Office to Alzheimer’s
I missed my mother and I missed being around people who have Alzheimer’s. So I volunteered to visit people living in a memory care unit.
Donna greeted me warmly. She wore a man’s plaid shirt, black sweat pants and worn tennis shoes. She was lean and restless, her hands a nest one moment and a flying bird the next.
“She likes to talk,” was all the staff told me.
She noticed my orange shirt and I told her it was seersucker.
“Yes, he had a suit,” she said. Her gaze was earnest and her words seemed urgent. Listening to her was an archaeological experience: hills of dust and sand with an occasional gem of a multi-syllable word.
“I knew they needed to triangulate,” she told me. “But then the 466 of them fell into the 375.”
She looked into my eyes as she spoke and I tried to intuit what she was telling me.
The aide who introduced me hadn’t known anything about Donna’s background and I wondered if she’d been an accountant, manager, or entrepreneur.
“How did you feel about that triangulation?” I asked.
”Tell me more about that.”
She offered a stream of eroded words, with major letters worn away.
As we talked, I felt I was dog paddling through rough seas, clinging onto whole words and struggling to understand her. But maybe I was trying too hard.
At the end of her time together, she smiled.
“Good,” she said. “This was good.”
Maybe it was enough for her to talk and have a dedicated listener.