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Today Lori La Bey, host of Alzheimer’s Speaks Radio will talk with Roy Tal, from Tel Aviv, who is doing amazing work to improve the lives of those living with dementia. Roy is a 34 year old with a big heart who was touched by dementia in his own family. Listen in on how Roy took that experience to improve the lives of others. He is a social entrepreneur & music graduate co-founder of Imagine an NPO that empowers special needs musicians. He is also the founder and CEO of 2gether which will be the focus of our conversation today.
Today our Dementia Chats Experts, those diagnosed and living with cognitive impairment, discuss what they would like to see their communities provide them to show they are truly a “Dementia Friendly Business or Communities.” You will find great tips for businesses and communities to consider.
Our experts today are: Michael Ellenbogen, Laurie Scherrer, Bob Savage and Truthful Loving Kindness. Lori La Bey, founder of Alzheimer’s Speaks facilitates the conversation. Lori can be reached at or visit Alzheimer’s Speaks website.
Voices of Those Diagnosed with Dementia
Dementia Chats™ was created with the intention to educate people living with dementia; their care partners both family and friends as well as professionals and advocates. Our Experts are those diagnosed with dementia. We have been doing this series since July of 2012.
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See what LeadingAge has to say about Lori La Bey
“Feedback from the conference planning committee and our leadership team was extremely positive. Many attendees commented that she was one of the best speakers they had heard.”
Pat Sylvia, Director of Education & Member Development LeadingAge Washington
Thursday, June 28th, 2018 – Lori La Bey host of Alzheimer’s Speaks Radio talks with Tommaso Commarano, Programming Director & Events Manager and Jessica Boonstra, Resident Services Coordinator both part of the Abiitan team at the Terraces. Their discussion will focus on the Abiitan difference in the Terraces Memory Care along with how they attract and keep quality staff. In addition, Ruth Colby who is a wife of a former Memory Care resident.will join us.
Today we have Celia Koudele’s whose Mother, Grandmother, and an Aunt all died from Alzheimer’s. She worked at the Alzheimer’s Association of Central and Western Kansas for 9 years as a Helpline Specialist. Celia is the author of, “The Little Book for Alzheimer’s Caregivers” to help other families based on her experiences.
Thursday we will have Author, Kathleen H. Wheeler. She Wrote her debut novel Brought To Our Senses, a story of family, struggles and dementia. Join our conversation as we explore her journey of disease, dynamics and family. Host Lori La Bey will be joined by Co-Hosts Laurie Scherrer and Susan Suchan.
Today we had a wonderfully honest conversation with Claire Webster the founder of Caregiver Crosswalk. She talked of her feelings of being overwhelmed trying for her mother with dementia and trying to be “Super Woman,” to the world which eventually lead to a nervous breakdown. Claire shares her thoughts on caring, her families reaction to dementia and the changes in herself and how she has come out the other side stronger than ever and is now helping other families cope and walk through the maze of dementia.
Below is an article I wrote for my first Mother’s Day without Mom. It was a very healing moment writing about her. I feel it still stands true and maybe, just maybe it will help others on their own healing journey. I hope you enjoy it.
By Lori La Bey – copyright 2014
Lori La Bey founder of Alzheimer’s Speaks
Through my mother’s thirty year journey with dementia she continued to guide and teach me; love me in ways I did not know where possible, especially in times of illness. It’s now been 72 days since mom slipped into the heavens and joined my father. Although I can rationalize her journey on earth is over and she is now in a much better place, free of pain, fully mobile and mind intact; I am struggling.
Today I Will Visit Her Grave Site With My Beautiful Daughter Danielle,
Who Loved Her Grandma So Very Much.
Going There Gives Me A Sense Of Peace.
The Cemetery, A Place Where I Can Honor Her,
Leave Roses And Balloons In Honor Of Our Relationship And
The Love We Had For One Another.
Throughout My Life, My Mother Has Been My Logical And Loving Conscious.
Mom Was My Rock.
Mom is the one I could always depend on. She was not only my mother, but my best friend. As my friend Lisa Hirsch titled her book, “My Mother My Hero” pretty much sums it up!
Through tough times she was my guide and support.
On special occasions we celebrated together.
Mom Taught Me:
To look for the tiniest of things to be grateful for.
To hold a hand out to those in need.
To love deeply.
To consciously make a difference in my life and others.
To work hard and be responsible.
To understand my impact on others; realizing, appreciating and honoring the world is much larger than myself and that we are all interconnected.
To understand that to be a Mother one does not have to have their own child; but rather to be willing to adopt a child in mind, body, heart and soul.
To make a connection and difference in someone’s life, is to be a Mother.
Mom Showed Me How By The Way She Lived Her Own Life.
Leading by example showing me a variety of ways to be a compassionate person.
How to listen to others, not just hear their words.
To look for nonverbal signs of what others truly want or need, when their words were lost or pride held them back.
To look past the everyday judgments and see the whole person standing before me.
Through Illness Mom Taught Me:
To let go of control. To realize it is a mirage, a trap of guilt and pleasure.
To embrace the simplicity of life.
To smile and spread grace.
To love more deeply than I ever knew was possible.
To laugh hard and authentically to embed the moment into my soul.
To look for and create joy in all moments of life, no matter how difficult they are.
To talk openly and honestly with others acknowledging all emotions without embarrassment.
To understand we are all in this life together and that shame, guilt and denial shut us down. Realizing the only way to get past those crunching emotions is to be open, honest and proud you’ve recognized them and what has triggered them; allowing you to move through them. Past them. Over them.
To not only say, “I’m sorry” when wrong, but to change my behavior to avoid it from happening again.
To feel my fear, think of alternatives to remove it and to be brave enough to take action to reclaim the life I envision.
To follow my instincts even when they seem goofy or senseless.
To trust in a higher power than myself, knowing I’m never alone.
To honor everyone’s beliefs.
To realize prestige, money and objects are just things. They will not make you a better person; until you realize they can be powerful tools to expand your work for the greater good.
She taught me the importance of being person centered and what it truly means – which is how and why I created “Your Memory Chip.” – Are they Safe?, Are they Happy? Are The Painfree?
Through All These Lessons And More,
I Find I Still Want Her Back In This Physical World Where I Live.
Some days my heart aches so bad I think it will explode; or maybe, just maybe it will stop beating all together. I logically believe and know in my heart mom is in a much better place. In heaven with my dad probably dancing and laughing with many friends and family who have also passed.
But Today, My Mind Wonders…
How Long Will The Pain Of Her Loss Last?
My heart longs for the warmth of her being.
My body reaches out to touch and embrace her, wanting to feel the calmness she always gave me.
My soul wants to be in her physical presence. The presence that grounds me and allows me to feel strong and confident; even when weak.
My nostrils want to take in one last breath of her essence.
My mind wants to create more moments of joy with her.
Yes Today I Will Go To The Cemetery,
Where I Know She Is Not.
Mom’s soul is not limited to the small patch of grass next to her headstone.
Mom is in the air I breathe.
She is in the sunlight that warms me and ignites my growth.
She is the rain that falls, filled with nutrients and washing away the toxins.
She is the snow that chills me and brings a brilliant beauty by white washing this canvas called earth.
She is the sunset that screams at me to be amazed by our God and the beauty which surrounds me.
She is the moon that calls me to reflect, regenerate and give gratitude for the life I am blessed to live.
Mom, on this Mother’s day I honor you,
and all Mothers who have warmed a child’s heart, taught us soul lessons, loved us unconditionally as we have taken missteps, stumbled and fallen.
To all women who have been then there to pick us up and wipe us off.
Who have kissed a booboo.
Given a hug when we have felt unworthy.
Who sat silently in our presence when no words were needed to make us feel safe and loved.
To your hand, when you reached out to let us know we are not alone.
To your words of encouragement when we were down.
To your thoughtful and thoughtless
celebration when we finally got it right!
Each Mother is special.
An “Earth Angel” Guiding Us In This Physical World.
Thank you to all Mother’s, for who you are and what you do for the world at large.
Thank you Mom for all you taught me.
All you gave me.
All you continue to give me from the other side.
Your continued connection through dreams and through our souls has been a beautiful gift to me.
May Your Mother’s Day Be blessed.
May You Hear The Love My Heart Sings For You.
I thought I would add this short video, one of many, which means the world to me. It’s of my mom singing in her end stages.
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I loved spending time at my grandparent’s house growing up, especially spending time with my grandpa. He was the “fun” grandparent and would allow us to do almost anything my grandma said we couldn’t, including sneaking us gum. One of my most vivid memories is my grandpa giving us his favorite candy, Circus Peanuts, a peanut shaped marshmallow candy. I disliked them when I was little and still don’t like them, but I quickly learned that while visiting grandpa and grandma, if grandpa wanted to give you Circus Peanuts you better take them because there was no other candy and if there was, we weren’t getting any. So I would take my handful of Circus Peanuts from my grandpa and pretend that I liked them.
As I was driving home from graduate school one night, I began to think about my grandpa and the dreadful Circus Peanuts. The more I thought about it, I realized that Circus Peanuts were a good analogy for life.
In earlier posts, I have written about how jealous I used to be of the kids in my class because their grandpa’s didn’t have Alzheimer’s and were still able to do things with them. By the time this realization hit me, my grandpa had been in the nursing home for a couple years. Little did I know that along the way, I was making memories.
By now, you are probably wondering what exactly Circus Peanuts have to with Alzheimer’s. Let me explain. I would be lying if I said that my experiences and journeys with having two grandparents with a form of dementia were easy. Truthfully, they each came with their own sets of experiences and lessons that I needed to learn and I am still learning from some of the lessons.
Much like with the Circus Peanuts, I have learned to accept what life gives me; which is often easier said than done. I still dislike Circus Peanuts, but treasure the memories associated with them. I might not like everything life throws my way, but each experience – good, bad, happy, and sad – is shaping me into the person I am becoming.
If there is a life lesson that Alzheimer’s has taught me, it’s that sometimes I just need to grab a handful of Circus Peanuts and keep on going because you never know what memories you are making or what lessons you are learning. Each time I see a bag of Circus Peanuts, I not only think of my grandpa, but also think about how Alzheimer’s has affected my life and reminds me that everything happens for a reason and though I may not know it at the time – it is shaping me. They also remind me to embrace each event in my life, good or bad, because each of these events are just handing me a bunch of Circus Peanuts and I will take each handful of Circus Peanuts and will make the best of them.
Michelle graduated from the University of Northern Iowa with her Bachelor of Arts in Gerontology: Social Sciences and a minor in Family Studies. She is currently pursuing her Master’s degree in Social Work with an emphasis in Aging from Minnesota State University Mankato.
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