Category Archives: Advocacy

Ten More Steps to Make Your Community Dementia-Friendly

I’ve been thinking about Michelle’s ideas, inviting us all to be part of creating a more-dementia friendly community. Here are additional thoughts from Michelle Niedens, L.S.C.S.W. Director of Education, Programs and Public Policy, at the Alzheimer’s Association’s Heart of America Chapter.

What volunteers would walk with their neighbors who were living with Alzheimer’s disease, so they could exercise and visit with others, without worrying about getting lost?  dem 3

What if neighbors volunteered to visit regularly or run an errand?

What if law enforcement went beyond Silver Alerts and had standardized protocol for individuals who wander and go missing?

What if gas stations and convenience stores had training to recognize someone who might be lost?

What if pharmacies provided support information any time an Alzheimer’s drug was prescribed?

What if doctor’s offices had “memory aware” time slots, so people living with dementia wouldn’t have to wait in a noisy, chaotic environment?

What if there were geriatric urgent care settings?

What if grocery stores had a “slow down” line?

What if grocery stores had designated times when shopping support was available?

What would it take for all of us to be “memory aware” and to act on that?

dem 2……………………..

I want to do something to help here in Kansas City, but I haven’t yet decided what. In my upcoming book, Staying Connected in the Land of Dementia, I write about Meet Me at the Movies & Make Memories, a movie-going event for those living with dementia and their partners, co-created by John Zeisel. That really appeals to me and I’m thinking about contacting local theater owners. I welcome collaborators and I also would love to hear your ideas. What actions are you inspired to take?

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

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Eight Paths towards a More Dementia-Friendly Community

On November 10, 2015, Michelle Niedens, L.S.C.S.W. Director of Education, Programs and Public Policy, at the Alzheimer’s Association’s Heart of America Chapter, gave a beautiful talk, inviting all of us to contribute to a compassionate, inclusive, and dementia-friendly community. Her ideas are both simple and profound and offer a challenge and an invitation for all of us. Over the next two weeks, I’m going to share some of Michelle’s visionary “what if” thinking.

From Michelle:

What would it take for all of us to be memory aware and to act on that?dem 4

What if restaurants had finger food menus? What if restaurants had specials from the finger food menu in the middle of the afternoon, when there were fewer people in the restaurant and things were quieter?

What if theatres had showings designed “memory aware”?

What if theatres had showings of old movies monthly with the “memory aware” icon on the website, so families could still enjoy getting out and having the cinema experience?

What if radio stations played songs related to memory issues in November (Alzheimer’s month) or April (Caregiver month)?

What if retail stores had designated days when the staff wore “memory aware” name badges and could provide more support to shoppers?

What if technology-based stores had annual displays of products that support memory, safety, or organization?

What if faith communities identified in bulletins/newsletters those activities that were “memory aware?”dementia friendly

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

 

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Four Ways to Support Care Partners

We all know that wrenching feeling of wanting to support our friends who are immersed in being care partners but not understanding how best to help. Many of us know the feeling of being exhausted care partners and not knowing just how to ask for the help we need.

Mara Botonis, author of When Caring Take Courage, created a list of meaningful tips, captured in a note to friends from a care partner. I really appreciate her empathetic yet practical outlook and wanted to share a few of her ideas with you.  cut flowers

 

 

The Present in the Present

I so appreciate you wanting to help me, I don’t always have time to read a book, watch a movie, or accept your generous invites to restaurant meals or spa treatments. The best gifts save me time and energy and are a treat I can enjoy at home without arranging care. I would love a visit that includes a pre-made dinner we can share. Any of these thoughtful gifts would lift my spirits: a CD with my favorite songs, a favorite dessert or snack, a chance to play a favorite game with you, a soft cuddly blanket, or fresh flowers.

 

Write Me

Write me a note or an email. I can’t always talk on the phone or devote the time I’d like to an in-person visit.   I’m usually only “free” to socialize when my loved one is sleeping and even then, I am alert to his needs. If you write to me, I can read it when I have time to truly enjoy it.

 

Share Memories

women photo albumReminisce with me. I willingly and lovingly put another person first for most parts of my every day. Sometimes I feel like big parts of me get lost so please remind me of our earlier times together. You may be the only one I get to do this with.

 

Please Stay in Touch

You don’t have to worry about saying or doing the right thing. I don’t always know what that is either. Please just keep trying. Don’t avoid calling or coming over because you may be feeling uncomfortable or unsure. I feel that way too sometimes and I’m here every day. Please don’t forget about me. I’m still here. I still love you. We still need and want you in our lives. Please reach out. There isn’t any way you can interact with me that would be unwelcomed or wrong. Just keep trying. #

 

When caring takes courage

After thirty years working in healthcare throughout the United States, Mara’s life was forever changed when a close family member was impacted by Alzheimer’s.

Please visit her website:

Website: http://www.whencaringtakescourage.com/

Amazon: http://www.amazon.com/When-Caring-Takes-Courage-Compassionate/dp/1478730536/ref=tmm_pap_title_0?ie=UTF8&qid=1400634987&sr=8-1

 

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

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Doing the Work of Our Hearts

I wanted to share a story of mine that just came out in the new Chicken Soup book : Volunteering & Giving Back.  I’d love to hear about the volunteer experiences that have inspired you.
Warmly, Deborah
Volunteering
  The Work of Our Hearts

 I woke up in the middle of the night with the answer I’d been seeking: I would self-publish the book of essays I had written about my journey through my mother’s Alzheimer’s and I would donate all the monies from the book to Alzheimer’s research and programs.

It was the summer of 2006, and for weeks I’d been wrestling with a question:

Should I seek a traditional publisher or independently produce the book? Both seemed daunting; in the past, I had primarily written books for and with other people and publication wasn’t my problem. But this book, Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey, was the work of my heart, born out of my desire to stay connected with my mother and find the joys and blessings in her experiences with Alzheimer’s. I wanted to share my stories of hope so they might help other caregivers.

“What about donating a portion of the proceeds?” my partner Ron asked. I was already making a marginal living; Ron’s suggestion was practical but I shook my head.

“I think I’m supposed to donate it all,” I told him. “That way, instead of selling a book, I’ll be raising money for a cause I’m passionate about.”

I talked through the details, consulting knowledgeable friends, an attorney and our local Alzheimer’s Association. My mission: to use the book as a catalyst to raise $50,000 for Alzheimer’s. There was one glitch; I estimated the cost of designing and printing could be in the thousands. Where would I get the money? But even though I was often worried about funds, this hurdle didn’t bother me. My intuition was strong. I was supposed to do this and would raid my savings if needed. Ron was excited about the project and pledged to work with me and help me make it happen.

“We will also help you,” my friends Rex and Jane said. They had shepherded several books through production and were extremely savvy. Plus, they wanted to be part of my mission.volunteering 4

Over the next months, Ron and I spent hours with Rex and Jane, working on design, cover, production and print details. Endlessly patient, they were dedicated to creating the book I envisioned. And they kept their fees to a minimum.

When the finished product arrived months later, I felt a sense of pride and completion. The beautiful cover featured one of my mother’s paintings, the type was easy to read, the interior design inviting.

Ron and I had often performed my stories together, and we began speaking and sharing stories from the book with Alzheimer’s associations, healthcare professionals, caregivers’ groups and others. When we traveled, we reached out to Alzheimer’s groups to set up speaking engagements. We were always moved and inspired by the people we met.

eye“The person with Alzheimer’s is the pupil in God’s eye,” the priest in a fourteenth-century church in Florence, Italy told us.

“Your story is my story,” a man in Istanbul, Turkey said.

“I’ve been caring for my mother for ten years,” a woman from Brooklyn, New York said. “It has been the most meaningful experience in my life.”

“When I learned Mama had dementia, I quit my job in Houston and moved back home,” a woman in St. Thomas, Virgin Islands said. “I wanted my children to know their grandmother in all the stages of her life and I wanted to be here to care for her.”

Sometimes we spoke in front of hundreds of people; other times we talked to groups of ten. When possible, we brought books and people often donated more than the suggested fifteen-dollar price, knowing that all the proceeds went to Alzheimer’s research and programs.

By 2011 we had done it! We had raised $50,000 for Alzheimer’s. But we kept going; we were still learning and growing. The work was healing for both of us and we loved connecting with other caregivers.

In 2012 I was ready to give the book a wider distribution and reached out to Central Recovery Press. They published an enhanced edition in 2013. Today, our fundraising journey continues as we donate a portion of our proceeds to this important cause.

The self-published version of Love in the Land of Dementia served as a catalyst for raising more than $80,000 for Alzheimer’s programs and research. My stories of looking for the blessings in the journey reached thousands of people, fulfilling my goal of making a contribution to the world. And the bonus was that both Ron and I had changed.

By following our intuition and doing the work of our hearts, we became more compassionate, understanding and trusting.volunteering 2

by Deborah Shouse

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

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Four Page-turning books

imgresI have to say, I wasn’t really in the mood to read a memoir about the Alzheimer’s journey. But a friend recommended The Long Hello and I sat down to leaf through it. Four hours later, after both tears and laughter, I had completed the lyrical journey, an artful weaving of rational recall and poetic pouring. I could see and feel Cathie Borrie, the author, and I felt I knew her fanciful, magical, distracted, needy, exhausting, interesting mom. Cathie’s honesty and her ability to capture the intricate connections inherent in this dementia journey were like walking a familiar road through a mysterious jungle. This book is a burst of beautiful writing anchored by deep poignancy and meaning.

 

imgres-1I also really enjoyed Martha Stettinius’ Inside the Dementia Epidemic: A Daughter’s Memoir. Meeting Martha and her mom on the pages of her searching memoir was like rediscovering old friends. I identified with Martha and I was also caught up in her story. I was moved by her struggle to truly care for and take care of her mother, while still preserving her soul and her family life. Martha did a great job of creating a compelling and readable story, while offering a wealth of practical tips and resources.

imgres-2Several weeks ago, I wrote about my first visit to an Eden alternative home, the magical Sierra Vista in Santa Fe. The founder of Eden Alternative is Dr. Bill Thomas, who is one of the pioneers in making dementia care more home-like and person centered.  His book, Life Worth Living: How Someone You Love Can Still Enjoy Life in a Nursing Home – The Eden Alternative in Action, is rich with ideas for care facilities. Home care partners can use his concepts to make their household even more creative and welcoming. As a bonus, Atul Gawande wrote about Dr. Thomas, in his fascinating book, Being Mortal. You’ll be inspired by Dr. Thomas’s innovation and his tenacity.

imgres-3It’s not often that you read a book about dementia care and laugh.  But when Mara Botonis wrote about carefully laying out supplies for a creative arts project, only to have her loved one staring out the window, then studiously plucking lint from his sweatpants, I had to laugh. I could see my beautiful mom doing exactly the same thing. Mara’s book, When Caring Takes Courage: A Compassionate, Interactive Guide for Alzheimer’s and Dementia Caregivers, is all about making the most of our moments together. Mara knows about dementia from her career in senior living and she has taken the personal dementia journey with her beloved grandfather. She orchestrated the book to make it easy for the exhausted care partner to problem solve and get instant help. She offers activities and projects for a range of abilities and situations.

imagesWhat books are spurring you onward these days? I’m immersed in writing my new book, tentatively titled Creativity in the Land of Dementia, so I’m focused on the topic in all its forms. The great news is that there are so many amazingly imaginative people out there, making the world a more connective and creative place for those living with dementia, their care partners, family, and friends. Which means, making the world better for all of us.

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

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