Posts Tagged ‘Alzheimer’s Journey’
Timeless Tunes that Transcend
“It’s really a very simple program, but the results are unbelievable. You watch the film Alive Inside and you think those are just the reactions they chose for the camera, but we really do see instant and unbelievable results from many of those we work with.” Linsey Norton
Barrick Wilson of Wichita, Kansas, uses music to connect with his beloved wife Kristi.
Kristi showed the first signs of dementia in 2004, when she was only 60 years old. She was diagnosed in 2008 and three years later, Barrick took early retirement so he could care for Kristi fulltime. There were plenty of tough times as Kristi’s disease progressed and music helped ease the issues. Often Barrick took Kristie for a ride and they’d listen to favorite songs as they tooled along.
“Bad, Bad Leroy Brown was one of her favorites,” Barrick says.
In the afternoons, they’d sit on the sofa and listen to Golden Oldies together, both singing along. Then Barrick learned about the Roth Project: Music Memories;” (which is similar to Music and Memory) and he signed Kristi up, working with the Central and Western Kansas office of the Alzheimer’s Association.
“I purchased a boxed set of Rogers and Hammerstein’s Broadway musicals, records her parents had listened to when Kristi was growing up,” Barrick says. “I included Jim Croce and Kristi’s grandmother’s favorite hymns.”
Barrick worked hard to develop a playlist that keyed in on Kristi’s emotional memories; volunteers from the Alzheimer’s Association helped load it onto an iPod. Then Barrick had the pleasure of sitting next to Kristi and reveling in her beautiful smile when she put on headphones and heard Some Enchanted Evening.
“The music is a calming influence,” Barrick says.
Kristi is one of a couple hundred people enrolled in the Roth Project through the Central and Western Kansas office of the Alzheimer’s Association.
“Our staff offers counseling services to care facilities and to families as to when and how to use the iPod, “ says Linsey Norton, the Association’s Program Director. “We also help care partners notice behavioral cues that allow them to reach for the iPod headphones instead of the anti-anxiety medication. We are working with chapters nationwide to help them develop iPod therapy programs for families in their communities.”
Music helped Kristi when she needed to transition to a memory care unit. The staff offered her headphones and her favorite songs several times a day. Kristi got up and danced when Leroy Brown came on.
Barrick is a pianist and has also incorporated the songs he used to play for Kristi when they were dating. During their courtship, he played the piano in her parents’ living room. Now he sits in the facility’s dining room, his wife by his side, and he plays I’m in the Mood for Love, If I Loved You and My Funny Valentine. These classic love songs transcend rational thought and create an engineering marvel, a bridge that connects Barrick and Kristi.
Barrick shares this advice for care partners:
- Find out as much about the disease as you can. Read, watch videos, become friends with the Alzheimer’s Association and listen to their advice.
- Take your time putting together a playlist that will trigger positive emotional memories for the person living with dementia.
- Be prepared to join the person with Alzheimer’s in her world. It’s like living in an improv theater; you don’t know what’s coming next.
- Take care of yourself. If you need help, ask for it.
Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.
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Using Alzheimer’s Art to Lift the Heart
Art enables us to find ourselves and lose ourselves at the same time. Thomas Merton
“Alzheimer’s is scary and art isn’t,” says Marilyn Raichle of Seattle, WA.
Marilyn’s mother Jean discovered her inner artist when she was a mere 89-years-old. Jean had never painted before: when she was growing up on a farm, art was considered childish and frivolous.
Initially, when Jean developed memory problems, she didn’t turn to art. But after Jean’s beloved husband died, Marilyn took her mom to a painting class sponsored by Elderwise, a Seattle-based non-profit that focuses on creative and spirit-centered care.
At first, Jean thought the idea was stupid. But Marilyn noticed how happy her mom was after art class. And Jean’s paintings were good. To honor her mom, Marilyn put together a calendar featuring Jean’s work. So many people commented on the delightful, whimsical quality that Marilyn knew her mother possessed a special talent. She began printing greeting cards graced with her mom’s paintings. She uses the cards to raise awareness for Alzheimer’s.
“Art is a creative way to get people to think about Alzheimer’s,” Marilyn believes. “While the prevailing narrative about dementia tends to focus on sorrow, pain, and loss, my mother’s art tells a different story. One look at her paintings and you see a mind at work, inhabiting a life of creativity, purpose, and joy.”
The Art of the Artist with Alzheimer’s
“Mom is the happiest woman I know,” Marilyn says.
Her mother has been distilled to her essence and Marilyn enjoys being with her.
“Through this dementia journey, my mom has taught me to be patient,” Marilyn says. “She’s changed how I feel about Alzheimer’s and she’s allowed me to relax and not take things so seriously. Mom is teaching me about taking joy in life.”
Marilyn wants to make the Alzheimer’s conversation life affirming, to inspire people to think creatively about senior care.
Meanwhile, though Marilyn’s had a vibrant career working in the arts and organizing arts festivals, she describes herself as a “terrible painter.” She hopes to relax enough to be able to paint with her mom.
Her mom may be an excellent artist, but she is a humble woman. When Jean is praised for her artwork, she laughs and says, “I must have gotten this talent from your father’s side of the family.”
The purpose of art is washing the dust of daily life off our souls. Pablo Picasso
Visit Marilyn’s blog: www.theartofalzheimers.net
Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.
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Forget Control: Remember Breaking Through
Too many times, after I’d spend time with my mom, I’d come home and instantly misplace my car keys or forget a phone number. The panic rocketed through me, the fear almost knocking the breath out of me, and I’d think, “I’m losing my mind; it’s happening to me.”
I recently read an insightful and reassuring blog by Mary O’Malley, author of What’s in the Way Is the Way. Mary offers a creative and spiritual perspective on the concept of forgetfulness. Here are some excerpts from her work.
It’s a Breakthrough, Not a Breakdown
By Mary O’Malley
A friend of mine is struggling right now. He has been the caregiver for his spouse for quite a few years and lately, he often feels disoriented, confused, and has had trouble remembering things.
He said recently, “Mary, I think I am losing my mind.” He went to his primary care provider, but so far, all of his medical tests are negative. So, what is going on?
I believe that my friend is experiencing an initiation through fear. He thinks he is having a breakdown, but I call it a breakthrough. Losing our mind is one of our biggest fears. Most of us think our mind has been our safe place; we believe it needs to be on top of everything and in control. It has given us a false sense of security our whole lives. When we believe the mind is checking out or losing control, we have a hard time accepting it. But we are not in control; life is in control. We are all going to completely lose control at some point. Our bodies are going to break down. We are all going to die. And there is actually something inside of us that is totally okay with all of that. Life loves us enough to give us the exact set of experiences we need in order to become free from fear, including the experiences of confusion, disorientation, and memory loss.
Often we think we are in control, but are we? Are we in charge of our breathing? Some people would say, “Yes.” But just try to stop your breath. We can make it shallow or deep and we can hold our breath, but ultimately we are not in charge of our life force: We are being breathed by life. Stephen Levine, author, poet, and spiritual teacher, says, “May you be so lucky to come across something you can’t control.” This is where we find the healing.
The Tibetan Lama and founder of Naropa University, Chögyam Trungpa Rinpoche gets to the heart of what we are exploring here when he says: “If there were no confusion, there would be no wisdom….
Chaos is workable…not regressive.
Respect whatever happens, chaos should be regarded as extremely good news.
Respect the upsurge of energy that is emotions, no matter what form. … Let yourself be in the emotion, go through it, give-in to it, experience it….. Transmutation involves going through such fear.”
In other words, confusion is a necessary part of our spiritual awakening. What would your life be like if you trusted it all, even deep fear and confusion?
To read Mary’s entire blog, please visit: http://www.maryomalley.com/2014/12/07/its-a-breakthrough/
To learn more about Mary and her work, visit: http://www.maryomalley.com/
Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.
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Using Business Acumen in Alzheimer’s Advocacy: Michael Ellenbogen
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
Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.
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Stepping into Your Own Caregiving Pilgrimage
“For me there is only the traveling on paths that have heart…and the only worthwhile challenge is to traverse its full length–and there I travel looking, looking breathlessly.” Carlos Castaneda
I love this image of looking breathlessly: so many times during our pilgrimage through dementia with my mother and later with Ron’s parents, we had that spark of wonder and connection that transcended all else.
Of course, other times we felt like we’d lost the path and were disconnected from our creative selves. During such times of uncertainty and struggle, I like to seek out inspiring people. I recently had the privilege of interviewing two such women and I wanted to share the experience with you.
Please click here and join Maggie Finefrock and Lydia Smith on a fascinating spiritual pilgrimage. Then take their tips and create your own “everyday” pilgrimage.
“Your soul knows the geography of your destiny and the map of your future. Trust this side of yourself. It will take you where you need to go but it will also teach you a kindness of rhythm in your journey.” John O’Donohue Wisdom
Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.