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Posts Tagged ‘Deborah Shouse’

Connecting in the Land of Dementia

Connecting in the Land of Dementia

on Alzheimer’s Speaks Radio  

Tuesday Sept. 13th, 2016

2pm EST, 1pm CST, 12pm MST, 11am PST and 7pm London time

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Tuesday we will have Deborah Shouse a former family caregiver, Alzheimer’s advocates, writer, and performer. She has a passion for helping people find the gifts and blessings in the care partners’ journey through dementia. Deborah is the author of the Love in the Land of Dementia and the newly published Connecting in the Land of Dementia:Creative Activities to Explore Together.

Reach Deborah at:  DementiaJourney.org

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Dementia Chats Recording – The Impact The Voice Of Dementia Has

Dementia Chats Recording – July 28th, 2015

072815_DC_harry_michael_tru_lori_Richard_Taylor_NAPA_Alz_Org_AdvocaatedThe Impact The Voice Of Dementia Has

Click Here To Watch The Webinar

Today’s show was a very interesting conversation.  We open with honor Richard Taylor, an icon in shifting dementia care around the world through his voice that spoke openly about his diagnosis, pushed society to be more compassionate and serve those with dementia better. (For a beautiful article on Richard, please read this article by Deborah Shouse.)

From there we discussed the latest article written about NAPA and the Alzheimer’s Association banning Michael Ellenbogen, after his speech at NAPA. Here is a recent article written by Crissa Shoemaker DeBree with the Intelligence titled Alzheimer’s committee members speak out on behalf of Warwick man.”

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Returning to Who He Was: Richard Taylor’s Journey as an Advocate

Here is a beautiful description of who Richard Taylor was and his profound work,

by Deborah Shouse.

Returning to Who He Was:

Dr Richard Taylor

Dr Richard Taylor

Richard Taylor’s Journey as an Advocate

“If you know one person who has dementia, you know one person who has dementia.” Richard Taylor PhD and …

“Dementia has brought me back to who I was to begin with,” says Richard Taylor, PhD. “I’m more self confident in myself. I feel an intensity in the moment that I didn’t have before.”

Living the Before and After: From Professor to Unemployed to Author and Speaker

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

“Since I’d written a book, people thought I seemed smart and interesting,” Richards says.

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.”

Creative Sparks:

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.

deb s bkcov love inth lland of dementiaThanks to Richard Taylor for sharing his wisdom.

Article by Deborah Shouse, DementiaJourney.org

 

 

 

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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. 

hope sign “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.”  rename signStart 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.”  reaching handsSet 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_040_1LQSoftCroppedTo 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!

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deb s bkcov love inth lland of dementiaDeborah 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.

debron pic 2Deborah 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.

To learn more about Deborah’s work      Follow her on Twitter: DeborahShouse@Twitter

For more resources check out our website below

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Every week, Deborah Shouse interviews couples and writes their love story for the Kansas City Star. Every story is different and talking to people who are in love is always inspiring; often couples have to overcome enormous obstacles to bring their relationship into reality. Recently she talked with two friends whose love and cosmic connection shone out from their faces and rang out with their words. Below Deborah shares this small part of their story.

An Insider’s Look at True Love:

Charlie and Elizabeth’s Story

The coffee date was going better than Charlie, age 60, could have ever imagined. Just a month earlier, his best friend had burst into Charlie’s dark apartment and roused Charlie from his lethargy, saying, “You need to open up these windows and let some light in. You should start dating.”

“Who would go out with a guy who has Early Onset Alzheimer’s?” Charlie asked his friend.

“Maybe you should find out,” his friend replied.

So Charlie Miller pried himself out of his depression and joined eHarmony. And this coffee date with Elizabeth Hack was the result.

Elizabeth, age 55, was brilliant, interesting, energetic, curious, and shared many of Charlie’s interests. When she asked Charlie what he liked to do, he mentioned listening to music, attending theater, visiting with friends and volunteering for the Alzheimer’s Association.

Elizabeth knew nothing about Alzheimer’s. She asked, “Does someone close to you have the disease?”

“Yes,” Charlie answered. He wanted to say more but the words stuck in his throat. He had never envisioned this casual meeting could possibly turn into a romance. Yet he was already comfortable with Elizabeth and felt their relationship was meant to be.

Over the weeks, they continued seeing each other, meeting at concerts, going to plays, and exploring new restaurants. As their friendship deepened. Charlie knew he had to share his diagnosis with Elizabeth and he worried she wouldn’t be able to accept it.

But before he had a chance to broach the subject, Elizabeth, wanting to learn more about Alzheimer’s and about Charlie’s interests, visited the local Alzheimer’s Association website and noticed a picture of Charlie, as a volunteer and a person who has Alzheimer’s. She was shocked, dismayed, and confused. But she was also in love with Charlie; his diagnosis did not diminish her deep feelings for him.

Charlie suggested she meet with his social worker at the Association to learn more about the disease. Elizabeth did that and though the information was daunting, her connection with Charlie was strong and true; she, too, felt they were destined to be together.

They began traveling and made plans to move in together.  In a vineyard restaurant in Napa Valley, Charlie proposed and Elizabeth said Yes. Today, they are living happily, grateful they have found each other

 “None of us know what will happen next,” Elizabeth says. “Just the other night, we were at a dinner party. One friend was just released from the hospital after heart surgery, and another friend was facing a hip replacement. I felt concerned for my friends and I felt so lucky that Charlie and I were happy and together. We are dedicated to living with joy and curiosity in the present moment.”

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

deb s bkcov love inth lland of dementiaShe 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.

debron pic 2Deborah 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.

To learn more about Deborah’s work, visit her blog DeborahShouseWrites

Or follow her on Twitter: DeborahShouse@Twitter

Check Our Alzheimer’s Speaks Website for more Resources

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Love In The Land Of Dementia – It’s A Beautiful Thing

alzheimersspeaks_radio_logo_from_websiteClick Above to go to the show. 

We are live today at 11am EST, 10am CST, 9am MST, 8am PST, 4pm London time

Or you can listen later!

debron pic 2Deborah Shouse and Ron Zoglin will join us today on the show.  Deb is the Author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.  They are both great story tellers and I know this will be an enjoyable show.

 

Contact info:

Website
DeborahShouse@Twitter
Deb’s blog–Navigating the Caregiver’s Journey at DeborahShouseWrites

gena haskellOur second guest will be Gena Haskell from Two Sisters Embroidery & Design who created the Remember Me Bib.  The bibs/clothing protectors are Fantastic!   My Mom has one and I love the idea they have incorporated into this everyday item that can help people engage and feel appreciated. Join us and learn more about these unique bibs as some like to refer to them as.

 

 

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Contact Info:

Gena Haskell          Website
(864) 430-3576          gena.twosisters@gmail.com

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Check us out for more resources and remember…

Dementia Chats Webinar is today at 3pm EST, 2pm CST, 1pm MST, 12pm PST, 8pm London time

Here is the direct link to enter the webinar.  Enter as a guest.  No password is needed.

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