Sharing Your Caregiver’s Story

pen and paperMy mother’s Alzheimer’s drove me to write. My writing inspired me to speak. I have received enormous pleasure from connecting with people all over the world, sharing my stories from Connecting in the Land of Dementia and from Love in the Land of Dementia. Now, I’m offering you tips for sharing your caregiver’s story.

 

It All Started with Grief

When I initially realized the depth of my mother’s memory loss, I was shattered with grief.

Every day I went through this:

Visit with mom.

Drive home, wiping tears from my cheeks.

Stumble into the house, walk into a chair or table, and misplace my car keys.

Sit at the dining room table and stare numbly into space.

One day, during the “staring numbly” phase, my partner Ron said, “Are you writing down your feelings?” It was a smart and sensible thing to say; the sort of suggestion I might make to him in a crisis. I was, after all, a writer.

“I don’t feel like writing,” I said.

But his words stayed with me. The next day, I slightly altered my behavior.

Visit with mom.

Drive home, wiping tears from my cheeks

Stumble into the house, walk into a chair or table, and misplace my car keys

Sit at the dining room table and write numbly for 20 minutesimages

 

Pouring Emotions Out & Inviting Understanding In

I poured out my fears, anger, and grief. After doing this for a week,

I began noticing how interesting my visits with Mom were; we were explorers on a wild inner trek.

I started documenting our time together, sometimes even taking notes during my visits. I wrote about the challenges, humor and blessings. I wrote about my conversations with my father, with friends and family and with the aides, the nurses, the social workers. As I wrote, I saw there was much hope, promise and energy in my new world.

As I shared my work with friends and family, I realized I was chronicling my mom’s last years and capturing part of our family history.

Sharing Your Caregiver’s Story

How do you take a challenging part of your life and bring it to the page?    Here are a few simple tips:

Pour Out Your Feelings  images-1

Give yourself time to feel your emotions, whether it’s through writing, art, music or other expressive arts. Writing down your feelings helps you understand the depth of what you’re going through. For me, writing helped change my fear into curiosity.

Notice the Details

Write down the particulars, noting simple concrete facts. You are a researcher collecting data.

Uncover the True Story

Look for the universal meaning in your specific experience. How have you changed? How will the reader change through reading your words?

Ask for Feedback

Read the story aloud to someone and see how it sounds. What’s working and what’s missing? Ask colleagues for a professional critique. Think over their advice and decide what is right for you.

Celebrate your Accomplishment

Sharing your caregiver’s story takes courage.  Yet, for me, it is one of the most cathartic and meaningful things I  do.

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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Finding the Holiday’s Spirit

This story from Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey celebrates finding the holiday’s spirit. Here’s to a season of peace, light, joy, and meaningful connections.
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When I walk through the doors of the nursing home, I find my mother in her wheelchair, right in front of the medication cart, right behind the central nursing station, where nurses, delivery people, staff and family members congregate. Mom is bent over, her baby doll lying across her lap. When I walk up to her, I ratchet up my energy and widen my smile. I am preparing to clown her into a reaction.

Later my father will ask if I think she recognized me.

“No,” I will have to tell him. “She did not recognize me. But she did smile.”

The smile is important.

My hand waving and head bobbing does its work: Mom does smile, and I can tell she is in her own current version of a good mood.

“Music in the dining room,” the activity board reads, so I wheel her in that direction. An elderly man with a red and white trimmed Santa hat passes us in the hallway.

santa

“Look Mom, there’s Santa,” I tell her.

Having been brought up Jewish, Mom never was all that enthralled with the Claus mythology and she has not changed.

We roll into the dining room just as the show is ready to start. The singer, Thelda, kicks off her shoes and presses play on the boom box. Above the cheerful sound track, she sings Jingle Bells. She dances across the room with the remnants of ballroom steps. She stops in front of Mom and sings right to her. She gets on her knees, so she can look into Mom’s eyes, and keeps singing. Mom notices her and smiles a little.

Thelda moves on, singing to each of the residents gathered around, so intent on making a connection that she often forgets the words.

“Is it all right for your Mom to come to Christmas holiday events?” the activity director had asked me, when Mom moved from the memory care into the skilled care portion of the nursing home.

“Yes, I’d like her to go to any activities. She likes the extra energy.”

I think Mom would approve of my decision, even though she has never celebrated Christmas. Growing up, her immigrant mother held on to the Jewish spirit of her home, kneading dough for Friday evening challah, observing each holiday and prayer period in her own way. Some orthodox women followed the religious law that commanded a small piece of the dough be burned as an offering to God. My grandmother was poor; she did not believe in burning good food, regardless of tradition. So she sacrificed a portion of the dough to her youngest daughter, my mother Fran. She created a “bread tail,” leftover dough that she smeared with butter and sprinkled with sugar and baked. When Mom used to talk about her mother, she always mentioned this special treat.

Even when I was growing up, and we were the only Jewish family in our neighborhood, my mother still did not sing Christmas songs. She did not willingly go to Christmas parties. She let the holiday rush by her, like a large train, whooshing past, ruffling her hair and leaving her behind.

Now, I am singing Christmas carols to my Mom for the first time. She is smiling, though really not at me. But I am sitting beside her while she is smiling and that makes me happy. She has moved beyond the place where the religions are different, beyond the place where she wants to separate the dough and make a sacrifice for tradition. Her new tradition is anyone who can make her smile.

With each song, from White Christmas, to Silver Bells, to Frosty the Snowman, Thelda moves back to Mom, tapping her, nudging her, shaking a bell almost in her face, acting sillier and sillier. Each time, Mom lifts her head and widens her mouth for a second.

For her finale, Thelda puts on a big red nose and sings Rudolph. When she dances in front of Mom with that nose, Mom laughs. For several minutes, Mom stays fixated on the scarlet nose, her face a miracle in pure enjoyment. I laugh too, so delighted to see Mom engaged and absorbed. Then, Thelda dances away and Mom’s face glazes back over.

Two weeks from now, I will bring a menorah and candles into my mother’s room. My father and I will have a short Chanukah ceremony with Mom. She will pick at the shiny paper covering the Chanukah gelt (chocolate candy disguised as money). She will slump over in her chair. But she will come back to life when she sees me, her only daughter, wearing a big red nose as I light the menorah.

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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One-Minute Tips to Boost Your Happiness

For three weeks, a small pile of books huddled on the floor of my bedroom, next to the bureau. Every time I saw those books, I thought, “I should put them away.” But I walked past them, too busy. Until I read Amy Newmark’s new book, Simply Happy. One of her tips challenged me. “What can you do in one minute?” I took the “One-Minute Tips to Boost Your Happiness” challenge. I swooped into the bedroom, scooped up the tomes, and put them in the bookcase. Then I looked at the blank carpet and smiled. That quick action filled me with joy.pile-of-books

Amy Newmark left her high-powered career as a Wall Street analyst to take over the Chicken Soup series. After years of immersing herself in true stories of miracles, lessons learned, and hopes fulfilled, she wrote her own book, Simply Happy. I was so inspired by Amy’s insights, I asked her to offer a few ideas for busy care partners. Here are some of her “One-Minute Tips to Boost Your Happiness.”

Amy’s Insights for Care Partners

Counting Blessings Adds Up to Happiness

“The gateway to happiness is counting your blessings,” Amy says. “If you’re not grateful for what is in your life, how can you be happy?”

Scientific studies have proven that people who are actively grateful are happier, healthier, and more productive. Plus, they get along better with family members, colleagues, and others.

“You can easily learn gratitude,” Amy says.

To start, each day jot down three things for which you’re grateful. Strive for three different ideas each day. At the end of the month, you’ll have documented nearly a hundred blessings.

“Writing and speaking your gratefulness changes your perception,” Amy says. “You start looking for good things during the day. You can share your blessings with your partner and encourage him to consider his own.”

Some people drop the blessings into a box, and then read them at the end of the day or the end of the month.

Smiling Serves You

Smile even when you don’t feel like it. Often, when you smile, people smile back. This boosts everyone’s spirits and energy. If they don’t give you a grin, it doesn’t hurt you.

“Your smile will change the way people react to you,” Amy says.

Zipping from Zero to 60 Brings Joy

unnamedSet a timer for 60 seconds and zip through a task you’ve been putting off. File the insurance policy that sprawls across the dining room table. Unload the dishwasher. Take your vitamins.

“Doing even one of those tasks every day will lighten your spirits,” Amy says.

Dropping Perfection and Embracing Your Own Abilities

Abandon your pursuit of perfection and strive for your own version of excellence.

“When you try to be perfect, you can’t get a lot done,” Amy says. “For most of us, it’s better to do five things at 90 percent than one thing at 100 percent.”

I love Amy’s final piece of wisdom:

“Treat yourself nicely,” she says. “Use the fragrant soap you save for guests. Indulge in a rich bit of good chocolate or a fresh crisp apple. Put the good sheets you save for company on your own bed. Give yourself a tiny pleasure every day.” ##

For more happiness boosts, read Simply Happy.chicken-soup-for-the-soul-simply-happy-9781611599497_hr

Visit Amy’s website at www.amynewmark.com or www.chickensoup.com

Extra tip from Deborah: If you like to write, consider submitting one of your own life stories to a Chicken Soup book. I’ve shared my stories in dozens of their books and it’s such a meaningful experience. Go to www.chickensoup.com, scroll down to the bottom, and click on “Submit Your Story” to learn how.

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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Creating a Memorable Dementia-Friendly Movie Experience

For months, our Kansas City Movies and Memory team has been working on creating a memorable dementia-friendly movie experience and film series. Ron and I were so lucky to partner with the Heart of America Chapter of the Alzheimer’s Association, the Kansas City Public Library, and the Kansas City FilmFest. For our first offering, we wanted a short movie with a splash of fun and a heart-filled message that would engage multi-generations.  We wanted live music and free popcorn. We wanted each person to walk away with a souvenir. And we wanted to attract a diverse audience.

img_4677The Red Balloon was a wonderful success.  This ageless film, about a boy and his magical balloon, attracted one hundred people, from ages three up through the nineties. Our audience, little kids and big kids both, clustered around the popcorn machine, watching the aromatic kernels blossom. They listened to Parisian songs by a renowned clarinetist and a guitarist.  They learned a little about creating a “memory aware” city. And they laughed, smiled, sat on the edge of their seats, and clapped, all avidly involved in the movie. At the end, we walked out holding a huge bouquet of red balloons and each person was excited to take home a lovely reminder of the afternoon.

Here’s what we learned: when you’re taking photos of people holding balloons, you don’t even have to ask them to say, “Cheese.”  They’re already smiling.

Here’s the great news.

You can easily have this movie experience at home. It’s perfect for an intergenerational family gathering, a holiday event, or just a cozy evening at home.

Here are a few tips for creating a memorable movie experience:

  • Pick a time of day where everyone has good energy. Our event was held at 2:00 in the afternoon.img_4663
  • Make sure the technology is organized and everyone can see the screen.
  • Arrange for comfortable seating and minimal distractions.
  • Offer your favorite movie-going indulgences. Freshly popped popcorn is irresistible.
  • Talk about what you’re going to see.
  • If you want, stop the movie in the middle and talk about what you’ve seen. Ask open-ended questions, such as “Would you have climbed the pole to fetch the balloon?” “Why do you think the boy loved the balloon so much?” “What does this movie make you think of?”
  • At the end, talk about the movie: what you liked, what you didn’t like, and what the movie made you think about.
  • When the movie experience is complete, hand each person a helium-filled red balloon. Even a red balloon filled with hot air will do!

img_4460The Red Balloon is just one idea. Please tell us about movies or TV shows you have enjoyed watching and share your film-watching tips.

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.CITLOD very smallLove in the Land of Dementia_cover

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