Category Archives: Relationships

Live Well with Dementia

“This is one of my favorite songs. What do you think of it, Fran?” We were sitting in Mom’s room in the memory care community, listening to a recording of The Very Thought of You.  Even though my mother could no longer answer this question, I liked hearing my father ask it.  He honored Mom as his long-time beloved conversational partner.  Through this simple action, he was helping her live well with dementia. His example helped me do the same.

This article by Karen Love, Executive Director of Dementia Action Alliance, reminded me of my dad’s positive outlook. It inspired and touched me and I wanted to share it with you.

Live Well with Dementia

By Karen Love, DAA Executive Director

In 1968, Robert Rosenthal and Lenore Jacobson published groundbreaking research that showed teacher expectations of students became self-fulfilling prophecies. At the beginning of a school year, first and second grade students’ IQs were tested. The researchers randomly selected a group of students regardless of their actual test results and led the teachers to believe that this group was capable of great academic achievement. The teachers, perhaps unwittingly, gave the students with the presumed higher IQs more positive reinforcements.

At the end of the year, the students were retested. The group labeled high academic achievers did, in fact, show higher achievement than the other students. Robert Rosenthal summarized this research finding as – “What one person expects of another can come to serve as a self-fulfilling prophecy.” This outcome, retested and proven by many others over the years, has become widely known as the Pygmalion Effect.

The dynamics of the Pygmalion Effect have significant impact for those who want to live well with dementia. There is abundant anecdotal evidence among person-centered dementia care experts that the Pygmalion Effect similarly applies.  Family, friends, and others may have low expectations regarding what people living with dementia can and cannot do and how they can function and live. While they may not even be consciously aware of this view, these lowered expectations affect every aspect of the relationship. They don’t engage, interact, and provide opportunities for interesting and fun activities at the same level they would if their expectations were higher.

I experienced the Pygmalion Effect this past week at a memory care assisted living community. I saw a resident sitting alone, apart from the others. I asked a staff member about her and was told she had very advanced dementia.

“What does she like to do?” I asked.

“Nothing, she can’t do anything.”

I knelt beside her and offered a small pillow covered in a soothing, tactile fabric. She immediately started stroking the pillow and then explored the seams. Her expression turned sweet and serene.  Touching the fabric was comforting to her. As I was getting ready to leave, the woman’s daughter arrived. I introduced myself and described how much her mother enjoyed the tactile pillow.

“Mom was a seamstress and loves the feel of fabric,” her daughter said, smiling at her mother. “I should bring one of the lap quilts she made when I visit.”

Her daughter was reminded of something her mother liked to do and she felt grateful she could bring something that would please her mom.

I was reminded how important it is to have interesting and engaging items when we visit. Examples include scented lotion, a tactile pillow or fabric scraps, and an enjoyable short story to read aloud.

Helping someone live well with dementia invites us to open our eyes, our hearts, and change our mindset.  Instead of perceiving limitations, we can spark the Pygmalion Effect by setting positive expectations. We can help make living well with dementia a self-fulfilling prophecy.

Karen Love, gerontologist – Executive Director, Dementia Action Alliance – Powered by People with Purpose 

Deborah Shouse is the author of Connecting in the Land of Dementia: Creative Activities to Explore Together and Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.
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Deborah Shouse is the author of Connecting in the Land of Dementia: Creative Activities to Explore Together and Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.

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Adapting to Dementia: Laurie Scherrer’s Inspiring Story

“I’m having a slow day,” Laurie Scherrer says, when I call her Pennsylvania home for our scheduled conversation on adapting to dementia. “So bear with me.”

It was easy to bear with Laurie, as she is bright, positive, articulate, insightful, and authentic.

I met her during a telephone interview for the esteemed podcast, Alzheimer’s Speaks, which she co-hosted along with founder Lori La Bey. I was so impressed with both of the women’s insights and interviewing abilities, and I wanted to learn more about how Laurie managed her life with early onset dementia.  Here are some highlights from our conversation.

From Sales Leader to Closet Cleaner

How do you go from excelling in a distinguished business career as a top manager and sales leader to becoming an unemployed 55-year-old woman who can no longer do a simple math problem or weed her prized garden?

That’s what happened when Laurie Scherrer was diagnosed with early onset dementia in 2013.  After days of languishing at home, cleaning out closets, and feeling like a complete nobody, she realized she needed to take action. And being a woman filled with determination and creativity, she did just that, with her husband offering his unwavering support.

“I have a passion for excellence and the recognition that comes with it,” Laurie says. “Being Number One in sales drove me.”

Since she had nothing to push towards, she turned toward writing blogs and to her former passion for sewing, so she’d once again feel accomplished. Plus, Laurie wanted something tangible to give to her family members, something that said, “I love you.”

Forgetting the Curves and Going Straight

In her earlier days, before her career consumed much of her time, Laurie was an accomplished seamstress, reveling in creating costumes for church programs. She had loved sewing quilts and clothes and decided she’d return to her former hobby.

She sat down with yards of fabric, ready to cut quilting squares. But hard as she tried, she could not figure out how to cut the fabric. She was slumped over her sewing machine, weeping, when her neighbor dropped by.

“I can’t do this anymore,” Laurie said.

“I’ll help you,” her neighbor said.

She brought over a cutting board with lines in it and talked Laurie through the process of cutting the cloth.

“Once she helped me lay it out, I could do it again,” Laurie says.  

Laurie has since created blankets, pillowcases, burping cloths, and more for her family.

“The straight lines are working for me,” she says.

Noticing the Blessings

Laurie is making the most of her life. She treasures her glorious back yard and her deepened relationship with nature.

“Before, I was so busy, I never saw all the beauty around me,” she says.

She also treasures her worldwide friendships with people living with dementia, which she nourishes through video chatting and posting on Facebook. She and some chat friends recently started a virtual spiritual dementia café, where they read, discuss scripture and pray with and for people from all over the world.

Most of all she loves knowing she is giving back and helping others through her writing, speaking, radio hosting, and advocacy.

Teaming Up to Produce Great Results

Laurie and her husband work together to help her live a vibrant life. Here are their tips:

  • Have a designated place and time to escape to, with no phones or email, so you can talk, cry, and really express yourself.
  • Talk through the tough times. Notice when someone has a difficult day and figure out how you can improve things.
  • Work together to adapt beloved activities.  
  • Laugh as much as possible.
  • Be thankful for every good moment.

I know you’re going to want to know more about this remarkable woman and her tips for adapting to dementia.  Visit https://dementiadaze.com/about-me/

Deborah Shouse is the author of Connecting in the Land of Dementia: Creative Activities to Explore Together and Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.
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Enjoy Dementia Inclusive Holiday Cooking

“Who prepared this delicious meal?” a friend asked during a holiday dinner.

I named my brother Dan, our head chef, first. Then I included the support team—myself, my mom, my daughters and nephews.

“Did I help?” Mom whispered as I passed her the mashed potatoes.

20151110-sweet-potato-casserole-vicky-wasik-9-thumb-1500xauto-427744“You sure did,” I told her. ”You mashed the potatoes, put the marshmallows on the sweet potato casserole, and mixed the fruit salad.”

“That’s good,” she said. “I like to help.”

Our desire to help and contribute to seasonal celebrations doesn’t end with a diagnosis of dementia. It’s lovely to linger in the kitchen together, preparing food for the holidays. It’s even lovelier when you can adapt and enjoy dementia inclusive holiday cooking so that people of varying abilities can participate.

Rebecca Katz, author of The Healthy Mind Cookbook, sees food as a great equalizer, something anyone can enjoy regardless of abilities. Fixing a delicacy for someone offers a tangible and delicious way to give back.

Here are some tips so you can enjoy dementia inclusive holiday cooking.

  • Leaf through a favorite family cookbook or recipe box and use the pictures and recipes as a catalyst for conversation. Ask open-ended questions, such as, ”What does that brownie recipe make you think of?” “What do you like about the holiday season?”
  • imagesSelect a special recipe to make together. Choose simple, safe and satisfying tasks, such as measuring, adding ingredients , stirring, and tasting.
  • Chose a time of day when you’re both rested.
  • Create a comfortable kitchen environment, by playing familiar seasonal songs you can both hum or sing along to. Reduce extraneous noise and distractions, such as a television in the background.
  • If you wish, take photos during the experience. That way, you can relive the adventure and share with family and friends.
  • Indulge in instant gratification, if possible, by sampling your work when the cooking is complete.
  • Even if the person living with dementia can’t help prepare food, he can still enjoy sitting in on the action and the conversation.

Whether you’re stirring a pot of orzo or dropping mint leaves into cool water, enjoy your time of creation and connection in the kitchen.

A longer version of this piece originally appeared on Joan Lunden’s excellent website:      Enjoy Dementia Inclusive Holiday Cooking.  Thanks to Sue Fitzsimmons, MS, ARNP, Judith Fertig, author of The Memory of Lemon, Kate Pierce, LMSW, Alzheimer’s Association Greater Michigan Chapter, and Rebecca Katz, author of The Healthy Mind Cookbook

Deborah Shouse is the author of Connecting in the Land of Dementia: Creative Activities to Explore Together and Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.

 

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Bringing Home the Gravy

6e73d395a9e787448195e9a77f64f0f5

rockwell thanksgivingThanksgiving changed the year I went vegetarian. I did not mind giving up the tender, moist turkey or the savory oyster-specked stuffing. But giving up the flavorful flow of mushroom-laden gravy was quite another thing. I watched enviously as my family ladled the luscious liquids over their mashed potatoes, turkey and stuffing. As I nibbled dryly on my carrots, green beans and salad, my lower lip protruded. I felt left out and deprived.

My brother, Dan, ever alert to the pouting big sister, came up with a solution.

“Next year I will make special vegetarian gravy just for you,” Dan promised.

Years later, that special vegetarian gravy has become one of my favorite Thanksgiving rituals. I begin fantasizing about it the moment the autumn leaves turn crimson. I know that in mere weeks, my brother and his family will arrive and I will have my yearly boost of family and feasting, highlighted by gravy.

When my brother calls to tell me his travel plans, I write his arrival time and GRAVY on my calendar. The night he comes to town, we make the shopping list together, avidly discussing how many pounds of mushrooms we need for both the carnivore and vegetarian pots of gravy. I relish the early-Wednesday morning trip through the grocery store, where Dan and I and our children carefully select the foods we will be making the next day. We linger in the produce aisle, filling several sacks with gleaming white mushrooms and buying rustling yellow onions. mushrooms

On Thanksgiving Day, Dan and I and other family members spend long, luxurious hours cooking. Dan mans the stove and I manage the slicing and chopping. Together we snap, peal, slice and dice the vegetables that will accessorize the turkey. I take special pleasure in wiping clean and slicing the mushrooms, then bringing my brother the brimming bowlful. When he has nodded his approval, I get out the old copper pot I bought in Germany in the early seventies. This year, Dan is improving his already amazing gravy. With his new immersion blender, he creates a rich base of caramelized onions, whose flavor surpasses that of the lowly vegetable cube. He adds in a little flour, then gentles the mushrooms into the onion broth. When the pot is bubbling with thickening nectar, he says, “Taste this and see what you think.”

I always think the same thing—“Wow, this is great.”

We are in a state of giddy and satisfied exhaustion by the time our guests arrive. We share grateful prayers with everyone and lay out the feast, including plenty of turkey-based gravy for the rest of the family.gravy

Then comes the moment I have been waiting for: I sit down, my own personal pot of gravy poised by my plate. I cover the mashed potatoes, carrots, green beans, and salad with the aromatic concoction and I savor every bite. But more importantly, I savor the bounty, creativity, and love that have gone into this simple dish. Through this gravy, my brother speaks with his hands and his heart, saying: “I care about you and I am going to make sure you are not left out and that you have something fantastic to eat.”

For that and so much more, I am thankful.heart gratitude

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And now, if you’d like to bring home this delicious gravy, here’s how:

Dan Barnett’s Chicago Style  Never-Enough-Mushroom Vegetarian Gravy

Ingredients

2 large onions (chopped)

2 pounds (or more) white button mushrooms sliced (can add some portabellas for enhanced flavor)

1 cup of white wine (of lesser quality)

Salt & pepper to taste

Olive oil

Directions

To create the gravy base:

In a four -quart pot, pour a thin layer of olive oil and turn the burner on medium.

Add the onions and sauté for10-15 minutes until they are caramelized (golden brown)

Add water until the pot is about half full.

Simmer slowly for 30 minutes.

Blend the onion water mixture using either an immersion blender or by transferring the mixture to a food processor.

Once you have the gravy base

Add the 2 pounds (or more) of sliced mushrooms, white wine and fill the pot with water until it is 3/4 full.

Simmer for 30 minutes and season to taste with salt and pepper.  images

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Deborah Shouse is the author of Connecting in the Land of Dementia: Creative Activities to Explore Together and Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.

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At Long Last: A Page-Turning Love Story

2005_3_comptxMy hands trembled as I reached out my arms. For three long years I’d been working toward this meeting and yearning for this moment. Now, it was finally here. She was more beautiful than I had imagined, with a pleasing weight, just right for holding, just right for spending long hours with. From a glance, her personality seemed strong and purposeful and yet her warm, colorful exterior told me she would be easy to read.  As she gradually opened up to me, I felt her power, her accessibility, her willingness to share ideas and wisdom. She felt great; she looked great; and she was brimming with exciting new ideas. Three long years and finally, she was in my arms. I hugged her tightly. At last I was holding my new book, Connecting in the Land of Dementia: Creative Activities to Explore Together

What makes this book unique? It’s the amazing people who contributed to it. During the writing process, I interviewed dozens of innovators across the globe, gathering ideas that engage the creative spirit so you can continue to experience meaningful moments throughout the dementia journey. These luminaries inspired me every step of the way and I am eager to share their ideas with you.

This book is brimming with easy projects using music, art, movies, cooking, gardening, and more. Here are some of the benefits you can look forward to when you do these activities together: Increased energy and socialization, an improved sense of purpose, reduced anxiety, and chances to express yourselves in new and meaningful ways.

Here’s even more good news about the ideas in this book. They’re adaptable for all ages and abilities, and you don’t need to have any special talents. Simply incorporate them into your daily routine and you’ll enrich your time together.

Marc Wortmann, Executive Director, Alzheimer’s Disease International, called the book “A ‘must read’ for every care partner because it really helps you to look at things differently!”

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If you’re in the Kansas City area, please join us for the book launch on Sunday afternoon, October 9th, at 1:30 for a reception in the Truman Forum at the Plaza Library. The free presentation will begin at 2:00  This lively program, filled with ideas, stories, and songs,  features myself and my partner Ron Zoglin, musical luminaries Rod Fleeman and Cynthia Schroer, and guest speaker Michelle Niedens from the Heart of America Chapter, Alzheimer’s Association.

RSVP 816-701-3407 

For those of you in the Washington DC area, please join us at the free Alzheimer’s Foundation of America Caregiver’s Conference on Thursday September 29. We’ll be presenting there, along with other experts in the field. Click here to register.

We recently heard from several readers, saying, “This book is going to help so many people. I’m recommending it to my friends and colleagues.”

That’s what this is all about: enriching people’s lives through meaningful engagement.

It’s a challenge, bringing a new book into the world and we welcome your ideas and help in spreading the word about the book and the event.

You can order a copy now from Rainy Day Books, our book-seller for the event, or online.

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Here is some advanced praise:

“A thoughtful and positive guide to the very thing I find myself constantly advocating to doctors, caregivers, and family members—social stimulation and creative arts will limit the need for psychiatric medication and improve the quality of life for those with dementia more than anything else.”   Doug Wornell, MD, Life Solutions Group for Geriatric and Neurological Psychiatry

“Buy this book, read it, highlight what inspires you. As you make notes and bend pages to personalize this guide, you are creating a family treasure.” Carol Bradley Burdock, Founder of Minding Our Elders

“Deborah Shouse provides a great public service by shining light on the numerous creative activities that can meaningfully engage the minds and spirits of persons living with dementia. From personalized music to storytelling, Shouse makes it easy for caregivers to understand the various options they have to help their loved ones navigate through their everyday lives.”  Dan Cohen, MSW  Founding Executive Director, MUSIC & MEMORYsm

 

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