Monthly Archives: July 2015

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

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

imagesLiving 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.

pages of writing

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. images-1

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.’”

images-2Reigniting 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.

Thanks to Richard Taylor for sharing his wisdom. Richard passed away from cancer on July 25, 2015, but his spirit and his advocacy work will long live on.imgres

Thanks to Lori La Bey for sharing my article about Richard with her readers.

Please visit her site https://www.alzheimersspeaks.com

for more information about Richard, including an interview with Lori.

Lori’s site, blog, and radio program feature inspiring people who are working for and with those living with dementia.

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

 

 

 

Advertisements

1 Comment

Filed under Advocacy, Care Partnering, Caregiving, Communication, Inspiration, The Arts

Three Secrets for Maximizing Your Meals and One Tip for Increasing Your Energy

Wouldn’t it be lovely to nourish and nurture ourselves at the same time? My friend Lisa Everett Andersen is a clinical pharmacist and a board-certified clinical nutritionist. She believes how we eat impacts our nutritional well-being. Her ideas have helped me maintain my energy and savor my food, even when I’m stressed and certain I have no time to spare.

  • gratitudeGive thanks. Scientific studies show that blessing the food has a physical impact, raising its vibrational energy level and improving the way you receive the nourishment. Before you take a bite, you can give thanks to the plants and animals, and to those who grew, harvested, and prepared the meal. You can also honor yourself and give thanks for your own role in procuring, preparing, and serving.
  • sit up straightSit up straight. No one wants a kinky digestive tract! Proper posture takes away the twists and turns and aids in digestion.

 

 

  • eating
  • Make the most of your dining (or snacking) experience. Slow down and bring your attention to the food. Notice its color, texture, and aroma. Take a bite, hold it in your mouth, and truly experience the taste. Of course, the primary reason you eat is to get energy to the cell’s mitochondria. But you also eat for pleasure. Chewing your food well is a crucial first step for digestion and a great source of pleasure. When the food is on your tongue longer, you better appreciate its deliciousness and you are sooner satiated.
  • H2OBoost Your Flagging Energy with a Shot of H2O. When your energy falters and flags in the later afternoon (or even sooner), dehydration is the most common culprit. Get out your purified water and drink deeply. This magical liquid doesn’t just lift up your energy—it also hydrates, cleanses, detoxifies, and alkalinizes your body.

For more about Lisa and her work, visit obrienrx.com/

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

Leave a comment

Filed under Care Partnering, Communication, Taking Care of Yourself

Taking a Dose from the Culinary Pharmacy

“Did you remember to pack my medication?” I ask Ron.medicine

We are sitting in our dining room, eating breakfast before taking off on a trip to the Black Hills.

“I did,” he says, swallowing the last bite of his omelet. “Do you need any right now?”

“Maybe just a small dose.”

Ron dashes upstairs to his secret cache of very important stuff and extracts the vital substance. He returns and hands me a small chunk of rich dark chocolate. This is my self- prescribed treatment for many of life’s challenges, both at home and on the road, including craving sweets, sour stomach, homesickness, and worry.

chocolateFor years, I’ve felt dark chocolate is important. But I didn’t understand how vital it really is until my brother Dan generously sent us a copy of Rebecca Katz’s new creation, The Healthy Mind Cookbook.  Rebecca is an accomplished chef, author, national speaker, and director of the Healing Kitchens Institute.  In this intriguing cookbook, she includes a glorious piece of prose she titles The Culinary Pharmacy, where she cites brain boosting foods and their healthy properties. The triumphant sounds of the Hallelujah Chorus seem to envelope me as I read the words “Dark chocolate” in her healing list. Avocadoes, cashews, mint, lemon, peaches, and strawberries, are among the other fabulous foods that boost our brains while managing to taste delicious. I am so impressed with the Culinary Pharmacy and with Rebecca’s friendly recipes that I reach out to her, to see what simple tips she has for busy care partners.

Though she is in the middle of a book tour, training a new puppy, and meeting a book deadline (her newest book on Soups is coming out in 2017), she graciously agrees to talk to me. Her father lived with dementia and the topics of brain healthy eating and using foods to engage with people are very dear to her.

First I give her a short quiz, which she aces.

“Guess what section of your book I read first?” I ask.

She ponders for about two seconds, then says, “The Sweet Bites section.”

Chocolate Cherry Walnut Truffles“I earmarked the Chocolate Cherry Walnut Truffles,” I confess.

“I took these truffles with me when I testified in front of a White House committee on dementia and food,” she says. “I wanted people to understand that we all need to experience healthy and flavorful foods.”

She tells me how preparing and cooking interesting foods together can help care partners stay engaged and connected. (For more details on that interview, please wait patiently until October 2016, when my new book on dementia and creative arts emerges. I’ll feature experts on cooking, music, gardening, storytelling, arts, and more!)

After a heartfelt conversation, Rebecca makes a very sweet gesture. She invites me to include the famed Chocolate Cherry Walnut Truffle recipe. She also gives me a tip for instant gratification.

“Instead of cooling the chocolate mixture for two hours before roll  them into truffles, you can stick them into the freezer for 15 minutes.  (After they are rolled and ready to eat you can store leftovers in the freezer)” Which is just what Ron and I do. And they are absolutely so healing and mouthwatering that I am considering adding them to my emergency “medications” list.

Here is the recipe from Rebecca’s book:healthy mind cookbook

CHOCOLATE CHERRY WALNUT TRUFFLES

MAKES ABOUT 20 TRUFFLES • PREP TIME: 15 minutes • COOK TIME: 21/4 hours or 15 minutes if you place the chocolate mixture in the freezer.

My dad, Jay, had this delightful habit; whenever you told him something that struck his fancy, he’d

roar, “That’s FANTASTIC!” and gleefully clap his hands for emphasis. This was doubly true if you

told him he was getting chocolate for dessert. Jay never met a piece of chocolate he didn’t like, and

I have a feeling that just hearing what’s in these truffles—dates, cherries, and walnuts, smothered

in chocolate, rolled in coconut and curry—would’ve given him cause to offer up a standing ovation.

Studies suggest walnuts may boost memory, while chocolate, as we all know, is the ultimate mood boosting

agent. One bite of this dessert and you’d be hard-pressed to feel any stress.

Ingredients:

2 tablespoons boiling water

2 ounces dark chocolate

(64 to 72% cacao content),very finely chopped

1/2 cup walnuts

1 tablespoon unsweetened cocoa powder

1 cup pitted and halved Medjool dates

1 teaspoon vanilla extract

Sea salt

1/4 cup finely diced dried cherries

2 tablespoons shredded coconut

1/4 teaspoon curry powder

Stir the boiling water into the chopped chocolate and let it stand for 30 seconds. Using a small whisk, stir until the chocolate is completely melted and glossy. Coarsely grind the walnuts in a food processor, then add the cocoa powder, dates, vanilla, and 1/8 teaspoon of salt, and process for a minute. Then add the chocolate mixture and process until smooth, another minute. Transfer to a bowl and stir the cherries into the chocolate mixture.

Cover and chill for approximately 2 hours, in the refrigerator or 20 minutes in the freezer until firm. On a plate, mix the coconut, curry powder, and a pinch of salt. Scoop up approximately 2 teaspoons of the chilled chocolate mixture and roll it into a smooth ball between your palms, then roll it in the curried coconuts to coat. Repeat with the remaining mixture, then place the truffles in an airtight container and chill thoroughly before serving.

COOK’S NOTE: If you want to give the truffles a golden hue, toast the coconut in a 300°F oven for 10 to 15 minutes.  For a more distinctive taste, add another ¼ teaspoon of curry powder.

To learn more about Rebecca, her books, speaking, and to get great tips on healthy foods, please visit her website at Rebeccakatz.com

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

Leave a comment

Filed under Creativity, Inspiration, Relationships, Taking Care of Yourself

Fringe Forward with this Edgy, Engaging, and Evolving Theater

For Deb Campbell, Executive Director, Kansas City Senior Theatre, the playwriting process starts with deep listening. When she decided to create a play about dementia for the Kansas City Fringe Festival, she turned to her colleague and friend, Johnna Lowther, for inspiration and support. Together they began a creative exploration by gathering groups of care partners and people with dementia. Deb designed group activities to get everyone connected to each other and to the topic.

Ron and I were honored to participate in one of Deb’s listening groups.

words“Choose a word,” she tells us and we select a word from a tumble on the table. Then she asks each person to add their word onto a magnetic board and tell us why they picked it.

One man chooses “apparatus.” He explains, “I’ve worked with tools most of my life. Since the Alzheimer’s, I can’t trust myself. I’ve put the tools away.”

One man selected ‘gorgeous’. “My wife, Annie, loved that word. She described everything as gorgeous, her engagement ring, flowers, a teacup, a bedspread. Everything was gorgeous to Annie. She was gorgeous to me.”

The stories around the words have us leaning forward in our chairs. Deb draws us further into our own stories. masksShe asks us to select from a pile of masks, then invites us to put on the mask and speak.

“Don’t forget the real me,” one person says.

“I’m not trying to hide,” says another.

We all have a turn holding a steering wheel.

“If you were driving this play, where would you take it?” Deb asks.

“In reverse,” a woman says. “I feel like that’s the direction I’m going.”

“My wife keeps getting lost,” a man says. “I now have to take the wheel.”

After the listening sessions, Deb reaches out to people to see if they’d like to share additional stories. She then meets them at their homes to record what they have to share. The stories are transcribed exactly as they are told.

“I’ve learned I can’t hurry the process,” she says. “I just let the stories flow in.

Once Deb has collected all the stories, she begins to hone in on the play.

“I become obsessed,” she says. “I devour the material, slosh around in it, and immerse myself. I feel overwhelmed, yet I trust the process.”

She plans to let the play unfold organically. Her job is helping people reveal their experiences. She won’t shape the drama until the theme emerges from her collection of powerful personal stories.

Originally, she used an image of her mother-in-law’s gnarled hand holding onto her baby grandson’s hands. She thought the play’s theme would be “Hold On.” But as she listened to stories and collaborated with Johnna, she realized the play is about accepting the present instead of holding on to the past. building blocksAn image of building blocks burst into her mind. Those blocks, once again marked with words, now anchor the play, which is titled, Seven Stages, Seven Stories.

The play will debut July 18 at 7:30 during the KC Fringe Festival and will play several times during the festival. The cast is a mixture of people with early onset dementia, care partners, storytellers, and experienced actors.

Ideally, audiences will be inspired by the depth and complexities of the people who are living with this disease and by the love and connections inherent in the journey.

Treat yourself to a meaningful theater experience. Come to Phosphor Studio 1730 Broadway Blvd. (across the street and south of Kauffman Center).

Saturday, July 18th 7:30

Tuesday, July 21st 6:00

Thursday July 23rd 6:00

Saturday, July 25th 4:30

Visit the Fringe website to get tickets and for any changes in scheduling: www.KCFringe.org

Visit Kansas City Senior Theater for more about Debra’s work:

www.kcseniortheatre.org

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

Leave a comment

Filed under Care Partnering, Caregiving, Communication, Creativity, The Arts