5 Steps To Becoming An Advocate For Those Who Have Alzheimer’s

5 Steps To Becoming An Advocate

For Those Who Have Alzheimer’s:

Lori La Bey Shares Her Story

By Deborah Shouse

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.

To learn more about Lori and to hear our conversation with her click here on Alzheimer’s Speaks Radio.

Lori La Bey, CSA, COS, AOSAD, Radio Host

Founder of Alzheimer’s Speaks 651-748-4714

Recognized by Dr. Oz and Sharecare as the #1 Influencer Online for Alzheimer’s!

Deborah Shouse is a writer, speaker, editor and creativity catalyst.

She is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey (Central Recovery Press Nov 2013.) Deborah focuses on finding the gifts, blessings and connections in the care partner’s journey through Alzheimer’s. Originally, Deborah self-published and used the book as a catalyst to raise more than $80,000 for Alzheimer’s programs and research. She will continue donate a portion of her proceeds to Alzheimer’s. See Book Reviews

To buy Love in the Land of Dementia, visit your local bookseller or favorite on-line retailer.

Deborah and her partner Ron Zoglin have performed her writings for audiences in the United States, New Zealand, Nova Scotia, Puerto Rico, England, Ireland, Chile, Costa Rica, Italy, Turkey and the U.S. Virgin Islands.