Tag Archives: caregiver

Six Tips for Surviving the Holiday Season When a Loved One Has Dementia

t-dayNormally, Thanksgiving was my favorite holiday, a time our family gathered together at my Kansas City home. But that November, my stomach clenched at the thought of our traditional Thursday evening meal.

My mother had Alzheimer’s and the holiday would be different.  I felt alone but of course I wasn’t: there were 15 million family/friend caregivers helping the five million Americans who have dementia.

I’d been through my initial storm of denial and grief. I felt I’d been coping well with Mom’s diagnosis, focusing on offering my father extra support and trying to flow with Mom’s now spotty memory and personality quirks. But a pre-season sadness invaded me in October and I found myself dreading the alleged festivities. How could we have our usual holiday dinner, take our after dinner walks, play Scrabble and Hearts and Charades without Mom’s participation?  How could we enjoy going to movies and plays when Mom was having trouble focusing and sitting still?  And how would Mom react to the situation: would she feel uncomfortable and out of place? Would Dad feel protective and anxious? And more important, what would we have for dessert! Mom was legendary for her chocolate and butterscotch brownies, date crumbs, and bourbon balls. No store-bought cookies would compare. brownies

As I stewed over the prospect of a depressing Thanksgiving weekend, I remembered the vows I had made: I had promised I would try to stay connected to Mom throughout her Alzheimer’s journey. And I had promised to see the gifts and blessings and fun in the experience.

So I began thinking: if the holiday is going to be different, why not concentrate on making it different in a creative and connective way? Here are some ideas I used to make the holiday work for me.

  • Acknowledge my feelings of loss and grief. I wrote them down and shared them with a few friends. Just expressing myself made me feel stronger.
  • List what I would miss most during the holiday season. My list included cooking with Mom, eating her brownies and rum balls. I asked my brother, who’s a terrific baker, to make some of our favorite sweets and I set up a place in the dining room where Mom could sit next to me while I chopped mushrooms and peeled potatoes.
  • Create an activity to give our holiday a new focus. We created a simple holiday scrapbook called, “The Little Kitchen that Could,” complete with a family photo shoot and a playful script.
  • Appreciate my blessings. We started our Thanksgiving meal by asking everyone to name one thing he or she was grateful for. I continued my gratitude practice throughout the holiday season, either alone or with others via telephone and social media.
  • Take extra good care of myself.  I treated yourself as I would a friend who’d suffered a deep loss.
  • Set up a lifeline. “I’m worried about melting down,” I told my friend. She urged me to call anytime for encouragement and reassurance.

These six steps helped me enjoy my holiday and appreciate my mom just as she was. Our holiday was “different” but it was also wonderful.

gratitude

 

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

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Setting the Table with Memories

Imagine sitting down for your favorite growing up meal. The sight, taste, and aroma of those hallowed childhood dishes would stir up a cornucopia of delicious memories.

eating in the 50sRecently my friend Elizabeth cooked such a meal for her husband Charlie, who is living with early onset dementia. Charlie grew up in the 1950s, so Elizabeth bought a period cookbook. She and Charlie read through the recipes to see which ones he resonated with.

“I will cook your favorites and we’ll invite a couple of your old friends from high school over for dinner,” she told him.

Elizabeth is a terrific cook and Charlie loved this idea. They analyzed the potential entrees, Beef stroganoff, chicken Cacciatore, meatloaf, but Charlie kept returning to one page: the recipe for Johnny Marzetti Casserole.  johnny marzetti

At first, Elizabeth demurred. As an accomplished cook, she didn’t like the idea of serving guests such a simple meal. But Charlie was persuasive, so she bought ground beef, canned tomatoes, cheese, and elbow macaroni. She cooked up a big pan of Johnny Marzetti, otherwise known as goulash, American Chop Suey, or macaroni and beef.

Charlie and his friends went wild over the food and laughed as they shared memories of school, the neighborhood, their families, and favorite foods. The cookbook, the meal, and the cook were a huge success.

Next on Elizabeth’s list: take pictures of Charlie with his favorite dishes and paste them in a scrapbook along with the recipes.

 

What are some of your favorite childhood meals?

For me, the desserts were most important. I adored cream horns, Mrs. Smith’s Lemon Icebox Pie, and Mom’s brownies and chocolate cake, particularly the icing. We still include Mom’s memorial brownies, courtesy of my brother, Chef Daniel Barnett, at family gatherings.

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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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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Four Riveting Reasons to Wield the Mighty Pen

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Psychologist Don Wendorf wrote Caregiver Carols: an Emotional, Musical Memoir to help other caregivers cope with their feelings and to help himself. Writing was cathartic for Don and it offered him insight and understanding into his caregiving journey. Don says, “I always encouraged my therapy clients to keep a journal and I have now experienced for myself just how helpful this is. The whole endeavor of creating something is very life-giving and essential.” Here are a few tips for caregivers from Don:

Nurture Yourself

Take care of yourself the best you possibly can. Do as much as you can that nurtures your body, soul and mind. Exercise like a fiend. Go out with friends. Do creative stuff. Feed your faith. Avoid burnout at all costs. Seek out, accept and ask for even more help than you think you need or want.

Reach Out for Feedback and Support

Rely on people you trust to give you feedback about how you’re doing and if you’re looking burned out. They may be able to see what you can’t or won’t. Talk to other caregivers who know this path and use local or online support groups. Express your feelings to others and let them support and comfort and care for you. Man, it feels good.

Jilt Perfectionism

Let go of perfection and forgive yourself and your caregivee when you goof up, which you ARE going to do.

Explore and Express Your Emotionsimgres-1

Look beneath your anger and see what layers of emotion it may be covering up: anxiety, ambivalence, fear, sadness, resentment, helplessness, hopelessness, depression, remorse, guilt, regret, loneliness, neediness. I think the biggest for me was GRIEF: I was slowly losing the love of my life. Express your feelings. There is absolutely nothing unmanly about it and you are then less likely to use anger as a blanket emotion. So, Caregiver Guys: Man Up!

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

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