Four Reasons You’ll Want to Read This Book

August 4, 2015

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

Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.

Posted in Advocacy, Care Partnering, Caregiving, Communication, Creativity, Relationships, The Arts, Uncategorized and tagged , , , , , , , , , ,

Five Steps to Becoming an Advocate for Those Who Have Alzheimer’s: Lori La Bey Shares Her Story

December 17, 2013
Lori La Bey was sick of all the negative information about Alzheimer’s Disease.
As a family caregiver for her mom, Lori didn’t appreciate the fear that surrounded the subject. 
 
 “I wanted to talk about hope and joy and the positive aspects that empower caregivers and those who are diagnosed with the disease.”  Lori says. 
 
Lori had a lot to share on the subject. Her mother had been dealing with dementia symptoms since the mid 1980’s and in 1996, she received a formal diagnosis of  Alzheimer’s disease. Lori, then age 37,  understood the challenges and stresses of being a working parent and a family caregiver. She understood the issues that her mom grappled with as she lived with Alzheimer’s. She also knew the feelings of joy, hope, and connection that she and her mother constantly shared. 
 
Stepping Out and Sharing
 “You have to tell your story,” friends told her. In 2009, Lori began to blog, focusing on the positive aspects of her experiences with her mom. 
 
“People were thrilled to hear the hope in my stories; they were tired of hearing all the doom and gloom,” Lori says.
 
Blogging led to speaking and speaking led her to training the staff who worked in her mom’s care facility and then to training in other care facilities, organizations and businesses. In 2011, Lori started her Internet radio program, Alzheimer’s Speaks. She recently launched a resource directory, which allows both professionals and the public to share information, and she is a leading resource in helping communities become more dementia-friendly. She has gradually eased out of her successful real estate career and has devoted herself to “Shifting Caregiving from Crisis to Comfort.”         
 
Five Foundations for Advocacy
Here are some of Lori’s tips for becoming a more effective voice for caregivers and for those who have Alzheimer’s. 
 
Rename Yourself
Consider yourself a “Care Partner” instead of a caregiver. “Caregiver sounds like you’re giving it all away and in reality, you’re sharing,” Lori says. “When you give, you receive.” 
 
Start the Conversation
Don’t be afraid to talk about your experiences with dementia. Often, you’ll learn friends, coworkers and even strangers are dealing with the same issues. 
 
Share Your Story, Your Feelings and Your Truth
Lori knew being vulnerable when sharing her own stories and authentically expressing her moments of sadness, triumph, anger, frustration, weakness, and happiness allowed others to feel comfortable  expressing their own emotions and stories.
 “Discussing all your feelings invites deep conversations and helps you build amazing relationships,” Lori says.  “Life is not perfect and we have to stop pretending it is.” 
 
Set Your Priorities
Give up trying to please everyone. “Focus on pleasing yourself and the person you’re caring for,” Lori advises. “Everyone else is secondary.”
 
Seek Involvement
Join a support group or start one to help others. Sign up for a dementia fund raiser, such as the Memory Walk.  Get to know people who have dementia. Start talking about the disease – share what you know. It doesn’t need to be complicated. Take dementia on as a cause.  
 
*****
lori la beyTo learn more about Lori and to hear our conversation with her click here on Alzheimer’s Speaks Radio.
For more information, please visit Lori’s website:
http://www.AlzheimersSpeaks.com   Lori La Bey, CSA, COS, AOSAD, Radio Host
Recognized by Dr. Oz and Sharecare as the #1 Influencer Online for Alzheimer’s!
651-748-4714
Posted in Advocacy and tagged , , , , , ,