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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.

 

 

 

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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.

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Three Great Reasons to Go Out for Art and Culture

Art shows that what people have in common is more urgent than what differentiates them.      – John Berger

Teri Miller, with the Alzheimer’s Association Houston & Southeast Texas Chapter, has witnessed the power of creativity and the arts. As the Early Stage Program Manager, Teri collaborates with Houston arts and civic organizations and encourages people living with dementia to attend the events, which have included viewing art, doing photography workshops, creating poetry, and spending time in nature.

calendar“Attending these activities offers people a sense of normalcy and gives them something to put on their calendars,” she says. “When they attend with friends or care partners, they have a shared experience to discuss and they also have ‘news’ to share with friends and visitors. Even people who say, ‘Oh, I don’t care for museums,’ usually have a great time.”

Sam is just one example. He grew up in a small Texas town and has been attending one of Teri’s early stage support groups. His wife, who cares for him at home, attends a care partner’s group.  When Teri formed a partnership with the Houston Museum of Fine Arts, she invited her early stage group to attend an arts tour with their care partners.

When Sam heard the invitation, he rolled his eyes and said, “I’ve never been to a museum and I’m not about to start up now.”

But the next week, Sam was there, signed up for the tour.

“I’m glad you’re here,” Teri told him. “What made you change your mind?”

“Well, my wife really wanted to go. She does so much for me and I figured I’d like to do something for her.”
Teri expected Sam to sit back silently, arms folded over his chest, when the docent asked, “What does this painting make you think of?  Has anyone ever been in a similar setting?”  To Teri’s surprise, Sam had opinions on each of the three pieces they discussed.

Sam’s wife smiled as Sam told Teri, “Originally, I didn’t want to go because I was worried I wouldn’t have anything meaningful to contribute.  But I guess you don’t have to know anything about art to enjoy the museum.”

Sam and his wife discussed the experience all the way home, adding a new topic to their usual conversations.  Discussing the art opened up chances to reminisce and connect. Plus the experience gave them something interesting to share with their grown children and visiting neighbors.

Like many art partnerships around the country, Teri was inspired by Meet Me, the MoMA’s  Alzheimer’s Project for people living with dementia. Houston benefitted from MoMA coming to train their docents. The program offers comprehensive guidelines for visiting a museum or viewing art at home.

http://www.moma.org/meetme/practice/index

For more about Houston’s art viewing program, visit

http://www.creativeaging.org/creative-aging-program/6523

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

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An Insider’s Guide to Savvy Smoothies: From Judith Fertig

The-Nutritional-Value-of-SpinachEver wish you could have an instant jolt of muscle and energy like Popeye did when he gulped down his can of vitamin-rich spinach? I asked renowned cookbook and fiction author Judith Fertig for some easy and healthy boosts of energy for worn out care partners. Judith agreed to share a few of her favorite smoothie recipes. They’re quick, refreshing, nutritious, and delicious.

Judith’s Secrets for Succulent Smoothies

Smoothies can be a caregiver’s caregiver. These blended drinks offer big nutrition in a small package, can be made in minutes, and make us feel like we’re doing something good for ourselves.

 

Smoothie recipes are like blueprints—they’re meant to be changed to follow what’s fresh, what’s in season, or what we feel like drinking. Berries, greens, melon, tomatoes, avocado, cucumber, celery, carrots and stone fruits like peaches and mangoes add antioxidants, fiber, vitamins and minerals. A tablespoon or two of healthy fats such as milled flax seeds, hemp or nut butter can add richness to the flavor, while providing omega-3 fatty acids necessary for complete nutrition. For the finale, add a touch of sweetness from fruits, maple syrup, agave nectar or stevia, or fresh lemon or lime juice.

veggies and berries

The best way to mix a smoothie is to start with either a liquid or an ingredient with a thicker consistency, like yogurt, placed in a blender or high-powered smoothie mixer. Next, add the desired fruits or vegetables and flavorings. It’s better to start on a slower speed while holding down the lid tightly. Once everything is blended, increase the speed to high to achieve a more velvety texture. If the smoothie is too thin, add more frozen fruit or ice.

Smooth-fleshed fruits like mangoes, bananas, ripe peaches and nectarines blend more easily to a silky finish than do fresh berries. Tender, baby greens such as spinach, kale or chard virtually disappear within a smoothie; if using mature, rather than baby greens, cut out the stems unless the blender or mixer is extremely powerful.

Blending enough ingredients for two smoothies can yield a leftover serving to store in a covered glass jar in the refrigerator. To reactivate the full taste later, just turn over the jar and give it a good shake to re-blend the ingredients.

Brilliant Green Smoothiesmoothies

Yields 2 servings

2 cups water

4 cups baby spinach

2 cups chopped butter lettuce, escarole, or romaine

1 large banana, cut into chunks

The juice of a lemon

Combine the water, spinach, lettuce, and banana and blend using low to high speeds until smooth. Add lemon juice and blend again.

Peachy Watermelon

Yields 2 servings

2-3 cups watermelon, seeded

1 cup low-fat vanilla-flavored dairy or coconut yogurt

1 cup frozen strawberries

1 fresh peach, peeled, pitted, cut into chunks and frozen

Combine all ingredients and blend from low to high speed until smooth.

Cool as a Cucumber Smoothie

Yields 2 servings

1 cup apple juice

1 cup sliced sweet apple

¼ cup applesauce

½ cup sliced carrots

½ cup cucumber, peeled and sliced

2 cups ice

Dash of nutmeg or cinnamon (optional)

Combine all ingredients and blend from low to high speed until smooth.

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Sometimes after I eat something truly healthy, I develop a craving for something darkly chocolate.

If you have such cravings, you’ll want to pre-order Judith’s new cookbook Bake Happy, coming out in Spring 2015.

And if you crave something delicious to read, the first in her new fiction series, The Cake Therapist, appears this spring as well.

For more great gourmet ideas, visit her website: www.alfrescofoodandlifestyle.blogspot.com/

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

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Five Tips for a Terrific Collective Artistic Experience

images-2Twenty years ago, Jytte Fogh Lokvig found herself in a quandary. She was doing a favor for a friend: visiting the friend’s mom weekly while the friend was out of the country for three months. The mom lived in a care facility and the first visit went wonderfully. But the second visit was shocking to Jytte.

“Her mom started screaming and cursing,” Jytte says. “I went to the nurses’ station to figure out what was wrong. The nurse told me she had Alzheimer’s.”

Jytte, who had experience in art and working with at-risk youth, knew nothing about dementia. But she started to learn. Using principles she’d employed with youth, she began offering additional activities at the facility.

“I didn’t view people with dementia as sick,” she says. “Everything I planned was directed at the well part of the person.”

She looked for activities that were collaborative rather than competitive, so everyone could bloom with a feeling of accomplishment.

“I started with a group collage,” she says. “That way, we were all working together.”imgres

Through the process of creating collectively, people relaxed and became comfortable with the materials. This experience was so fulfilling and moving that Jytte began working with families, guiding them in doing projects together.

Jytte suggests collages because they are easy and there is no right or wrong with collage.

“Collect old magazines, buy a few glue sticks, and break down big boxes to use for cardboard,” she suggests. “Engagement and conversation are the important things; if it never gets beyond discussing a picture of daisies that reminds her of her growing up garden, that’s fine.”

Jytte believes the keys to engagement include giving people enough time, letting them work at their own pace, and offering them consistent opportunities for self-expression.

When possible, invite others to join you for the collage experience. Introduce the project by asking the person with dementia for help, saying, “Hey Mom, I really want to do this project. Want to help me?”

images-1If Mom is reluctant, start the project and mention; “I sure could use your help if you don’t have anything else to do.”
Tear pictures out of colorful magazines.
Let Mom direct the artistic action.
Use the pictures to trigger conversation.
Enjoy the process and don’t worry about a finished product.

***

Jytte Fogh Lokvig, PhD, is the author of The Alzheimer’s Creativity Project and Alzheimer’s A to Z, Secrets to Successful Caregiving. She is also a founder of the Alzheimer’s Café.

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

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