Make Dreams Come True 

All her life, my mother dreamed of visiting Japan.  She loved Japanese art, food, and culture. But she thought such a trip was too expensive and complicated. Even as Mom struggled with cognitive impairment, her yearning of Japan remained. Then my brother moved to Tokyo and prepared to make dreams come true. He arranged for business class travel for Mom and Dad. He squired my parents everywhere and even set up a meeting with a Japanese master potter. He documented it all with photographs so we could all share in the joy.

Recently Ron and I visited Edencrest at Green Meadows in Johnston, Iowa, to learn more about their memory care work. When Nick Lensch, Assistant Manager, and Susan Babcock, Life Enrichment Coordinator, told me about their Dare to Dream program, I wanted to learn more.

“This program brings happiness to the dreamers living with dementia, their families, the staff, and other members of the memory care community,” Susan told us.

As  Susan gets to know each resident, she usually uncovers an unfulfilled dream. She brainstorms on how she can carry out the dream, including who can help from the community.

“Bringing the community in on the dream is wonderful for all of us,” she says.

Once she has the dream planned, she talks to the family. Often the dream experience is one the family treasures. Here are two of the dreams they orchestrated :

Joe had been a star baseball player in high school and a minor league player for a couple of years. He loved all things baseball.

“I wish my sons and grandson could have seen me play ball,” Joe often said.

Susan heard the wistfulness in his voice and created a plan. Partnering with the Iowa Cubs, she arranged for Joe to throw out the first ball during one of their games. Both his sons were there to witness their father, one son flying in from Japan for the event! Joe’s grandson stood by his side for the grand pitch, cheering him on. Then the entire family enjoyed watching the game together. #

Marianne loved to sing and often reminisced about times she and her father sang together.

“I wish I would go on the road and sing,” she often said.

Nick and Susan had an even better idea. They contacted a local singing group and asked if Marianne could perform with them. They were delighted to be part of her dream. Marianne selected favorite tunes. Her face shone with joy as she and the group performed to an enthusiastic audience, including her grateful daughter.

“We believe in embracing the moment,” Nick says. “Making dreams come true creates a string of treasured connective moments.”

To make dreams come true, here are a few tips:

  • Listen to each person’s stories and notice favorite ones. Ask yourself, is there a wish or dream tucked into one of those tales?
  • Double check with another family member or friend, to see if you’re on the right track.
  • Brainstorm ideas to fulfill the dream. What do you need in terms of people, venues, witnesses? Who would enjoy helping?
  • Put together a small team and set the time and place. Have someone ready to photograph and video the celebration.

For more ideas on how to make dreams come true, visit:

Make Dreams Come True

Nick and Susan

seniorhousingmanagement.org

Don’t forget your own dreams!

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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Four Fine Ways to Keep Remembrances Blooming

How do you celebrate Mother’s Day  or Father’s Day when your parents are no longer living? As the day approaches, I think of my parents and look for ways to keep remembrances blooming. During the years, I’ve explored ways to feel close with my mother, father, and other loved ones who have passed on. Here are four of the actions that keep me connected.

Dress to Connect

When I feel lonely for Mom, I like to put on her black blouse emblazoned with silver sequins. When Mom wore this blouse, it signified she was going someplace elegant.  She accompanied it with a long black skirt and high heels. When I put on my ordinary black slacks and black tennis shoes, I imagine my mother shaking her head. “Don’t you have any better shoes, dear?” My mother prods me from beyond the grave, intoning,  “A little lipstick would be nice.” Here’s the lovely part of our post-death ritual: instead of bristling at her grooming suggestions, I see how she wished the best for me and fondly remember her love of dressing up.

Feed your Memories

I still love to eat and share my parents’ favorite foods. My brother, who has untold culinary abilities, has mastered Mom’s butterscotch brownies and he has improved on her chocolate chip cookie recipe. He often bakes those for family gatherings and sometimes even mails me a box of nostalgic homemade treats.  As for my dad, he particularly liked Planter’s Deluxe Nut Mix. He adored the cashews, but he didn’t want to spend the money to upgrade to all cashews. He preferred to pick out the deliciously rare morsels, leaving behind a plethora of peanuts, almonds, and hazelnuts. In his honor, I often buy a can of mixed nuts. Did you know that memorial cashews have no calories?

Tell their Stories

We all have heirloom family stories that anchor us in our history. My father liked to talk about his growing up days in the Canal Zone, in Colon, Panama.  My mother favored her time serving as an Army nurse in Iceland during World War II. These were the stories of my growing up years and I think of them every time someone talks about Iceland, Panama, the Canal, or WWII. I have written some of them down so I won’t forget them. When I tell one of my parents’ stories, I feel they are in the room, leaning forward, smiling, and listening with delight. I like to share these tales at family gatherings and I like to tell them to friends. I also like to invite other people’s legendary stories.

Continue the Conversation

Sometimes I go on a solitary walk and talk to my mother. She loved birds and I point out the robins, cardinals, and sparrows on the route. I also tell her about my grandchildren, my work, and I discuss any dilemmas I’m struggling with.  My father loved being in the water and I often commune with Dad when I’m swimming backstroke. I tell him entertaining things that are going on and talk to him about my dreams and big ideas. My parents are still good listeners and I picture them nodding proudly and cheering me on.

A version of this article originally appeared on MariaShriver.com

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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An Insider’s Look at True Love: Charlie and Elizabeth’s Story

For years, I interviewed fascinating couples every week for a column in the Kansas City Star. Talking to people who are in love is always inspiring; often couples have to overcome enormous obstacles to bring their relationship into reality. One of my favorite stories stars two friends whose love and cosmic connection shines out from their faces and rings out with their words. Here is an short version of their beautiful story, an insider’s look at true love.

**

The coffee date was going better than Charlie, age 60, could have ever imagined. Just a month earlier, his best friend had burst into Charlie’s dark apartment and roused Charlie from his lethargy, saying, “You need to open up these windows and let some light in. You should start dating.”

“Who would go out with a guy who has Early Onset Alzheimer’s?” Charlie asked his friend.

“Maybe you should find out,” his friend replied.

So Charlie Miller pried himself out of his depression and joined eHarmony. And this coffee date with Elizabeth Hack was the result.

 

Elizabeth, age 55, was brilliant, interesting, energetic, curious, and shared many of Charlie’s interests. When she asked Charlie what he liked to do, he mentioned listening to music, attending theater, visiting with friends and volunteering for the Alzheimer’s Association.

Elizabeth knew nothing about Alzheimer’s. She asked, “Does someone close to you have the disease?”

“Yes,” Charlie answered. He wanted to say more but the words stuck in his throat. He had never envisioned this casual meeting could possibly turn into a romance. Yet he was already comfortable with Elizabeth and felt their relationship was meant to be.

Over the weeks, they continued seeing each other, meeting at concerts, going to plays, and exploring new restaurants. As their friendship deepened. Charlie knew he had to share his diagnosis with Elizabeth and he worried she wouldn’t be able to accept it.

But before he had a chance to broach the subject, Elizabeth, wanting to learn more about Alzheimer’s and about Charlie’s interests, visited the local Alzheimer’s Association website and noticed a picture of Charlie, as a volunteer and a person who has Alzheimer’s. She was shocked, dismayed, and confused. But she was also in love with Charlie; his diagnosis did not diminish her deep feelings for him.

 

Charlie suggested she meet with his social worker at the Association to learn more about the disease. Elizabeth did that and though the information was daunting, her connection with Charlie was strong and true; she, too, felt they were destined to be together.

They began traveling and made plans to move in together.  In a vineyard restaurant in Napa Valley, Charlie proposed and Elizabeth said Yes. Today, they are living happily, grateful they have found each other

“None of us know what will happen next,” Elizabeth says. “Just the other night, we were at a dinner party. One friend was just released from the hospital after heart surgery, and another friend was facing a hip replacement. I felt concerned for my friends and I felt so lucky that Charlie and I were happy and together. We are dedicated to living with joy and curiosity in the present moment.”   

 

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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Five Ways to Make Valentine’s Day Special for a Loved One with Dementia

My parents liked to celebrate Valentine’s Day with dinner and dancing.  Years into my mom’s Alzheimer’s journey, my parents’ love hadn’t diminished, but my mom’s capacity for going out to dinner and dancing had drastically decreased. I saw how blue my father was—one more event he had to give up, one more change in the woman he loved—and I searched for alternatives that might cheer him up. Here are five ways to make Valentine’s Day special.

Look for a favorite thing. Seek one simple pleasure your loved one might enjoy. Mom loved potato soup and chocolate and fresh strawberries. These were part of our celebration.

Nurture yourself: include your own favorite thing. Bring yourself into the celebration and include something that makes you happy. I brought foods my father and I both liked as part of our little party.

Pick several ways to express your love.  Poetry, music, gifts, flowers, and photo albums—you can use any of these resources as a catalyst to talk about your feelings. Dad and I sang Mom old show tunes and love songs, music she really enjoyed. Mom adored Shakespeare; we had a couple of sonnets on hand.  She and Dad had once created a beautiful flower garden; Dad brought her a single red rose.

Take joy in the simple act of expressing yourself. Being with my mom was a chance to really practice the mythical “unconditional love.” Mom couldn’t tell me she loved me. During one Valentine’s Day celebration, she fell asleep while I was holding her hand and talking sweetly to her. But there was a comfort in expressing my love and I kept on talking.

Celebrate love in all its glorious guises. During their long marriage, my father had walked into a room millions of times and often, Mom had been busy and hadn’t particularly smiled or remarked. But with her dementia came a deep dependency on Dad. When Dad walked into a room, my mother’s face lit up. My father basked in that light. The sparkle in my mother’s eyes was the new, “I love you, darling.”  The light said everything my mother could no longer say.

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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Orchestrating a Musical Conversation

When Ron’s dad was living in a memory care unit, Ron and I talked with the residents and their families, learning about their favorite songs. We orchestrated a sing-along and had fun working with everyone and putting together a scrapbook of each resident’s special tunes. The combination of music and conversation created a sense of community for us all. Julian West, who we met on a recent trip to London, is creating community through engaging people in music and dance. We really love the way he weaves the two art forms  together and wanted to share his easy and adaptable ideas with you.

Julian West had no idea what would happen at the care facility, but he trusted it would be something wonderful. An accomplished oboist and a teacher at the Royal Academy of Music, Julian assembled a violist, a composer, a dancer, and an artist to share energy and their art with people who are living with dementia.

“This was an experiment to see what could happen,” Julian says. “We worked completely improvisationally.”

Once a week, for eight weeks, the troupe came to the residential care home and created a living arts experience with residents and staff. They began by inviting everyone to choose a percussion instrument, such as rain sticks, bells, shakers, tambourine, etc.

“We had a musical conversation,” Julian says. “One person made a sound and another answered. We also chatted a lot. People commented on the music or expressed an emotion or impression.”

The musicians added their instruments and the staff and residents joined in, through percussion and voice.  They made fascinating sounds, like an improv jazz singer might do. The dancer twirled around in the center of their circle. Her free movements gave the group a focal point and inspired others to explore various movements.

“I let go of preconceptions and tried to create an open atmosphere,” Julian says.

The artists’ openness helped the “conversation” grow and blossom.

One woman who was living with dementia held up a tambourine, keeping it still and gazing at it as though it were a beautiful and revered object.

Julian’s first thought was, “She doesn’t know it’s a musical instrument”.

“I let that thought go,” he says. “I saw how expressive she was. Her interaction with the tambourine was beautiful and profound and she allowed us all to see the instrument differently.”

Even if you don’t have your own musicians and dancers at home, you can still create this supportive and creative atmosphere.

  • Share a few percussion instruments, put on some music you both like, and make some joyful noises. Experiment with bee-bop syllables to add a sense of freedom.
  • After the song, talk about the experience, what you liked, what you felt, and any other impressions that came up.
  • Consider inviting a “guest dancer,” someone who likes to move to music, or a child of a friend who’s taking dancing lessons. Go ahead and add your own moves.
  • Invite friends and family to join you. You’ll have something to laugh, and sing, and talk about.

For more information about Julian’s work, visit: www.julianwest.co.uk

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

COMING SOON: Connecting in the Land of Dementia: Creative Activities to Explore Together 

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Fulfilling the Bucket List, Trip by Trip

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Our friends Elizabeth and Charlie Miller are a constant source of inspiration. Here is one of the many ways they embrace life.

Elizabeth and Charlie knew they had to instantly work on their travel bucket list. When they met and fell in love, Charlie had been living with dementia for four years. He had not traveled much, but he wanted to see the world with Elizabeth. He asked a friend to help him plan a romantic trip to San Francisco, where he proposed to her.

After she said, “Yes,” they combined their love of beaches and nature and began adventuring, going on driving trips, taking cruises, and sharing a multitude of experiences. When flying grew too complicated and stressful for Charlie, they focused on local day trips or short driving trips.

“I used to have to travel alone,” Elizabeth says. “Now, I travel with Charlie. He enjoys the trip in-the-moment. How wonderful to have all these shared experiences. Plus, it’s renewing to be outside of our routine.”

DSCN1635Recently, Elizabeth and Charlie were driving around and Charlie said, “What was that long cruise last fall that had so many beautiful places?”

Elizabeth stopped to think. “Hawaii,” she said.

“Hawaii,” Charlie said, his eyes bright. “Wasn’t that the best cruise ever?”

Elizabeth smiled and felt a deep sense of happiness and connection. “You are right. It was the best cruise ever.”

To make every trip “the best” here are a few flying travel tips from Elizabeth:

  • Try for a non-stop flight at a time best for the person living with dementia.
  • Call TSA in advance and arrange for assistance in getting through screening.
  • Ask for a Pre-boarding pass to minimize the stress in boarding.
  • Get a business-type card that says, “Thank you for your patience with my companion. He is living with dementia.” Share this information, as needed.
  • Carry a travel packet that includes a letter from an MD, stating that your companion has dementia, and a medical power of attorney.  Include doctors’ names and contact information as well as emergency contact information.
  • Carry a bag of essentials: water, snacks, medications, a change of clothing, and activities.
  • Be flexible, in the flow, and have fun!

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

COMING SOON: Connecting in the Land of Dementia: Creative Activities to Explore Together 

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Three Marvels of Misplacing

“These days I am constantly losing things, a friend tells me. I understand, because I frequently misplace  objects and even words!

As I was worrying over this issue, which seems to plague so many people I know, I came across this piece I wrote several years ago. It reminded me to “seek” the creativity and joy hidden in every situation.  
Is it possible to have ten pairs of reading glasses and lose them all in the same afternoon?

“I don’t know where my glasses are,” Mom tells me. I bite my lip; she’s been misplacing things all day. We are supposed to be spending a day drawing and painting, trying to connect mom with the artist she used to be. We are supposed to bake cookies together and look through magazines. But I’ve been spending much of the time crawling around, looking under the sofa and chairs and between the cushions for the disappearing glasses.

“Let’s make our cookies. You won’t need your glasses for that,” I say.

“I need my glasses.”

           As I search, I wonder when it became a drudgery instead of a joy to find things. One of my favorite childhood games was Hide ‘N Seek. I loved being the Seeker, loved the surprise of finding someone in a tucked away, mysterious place. I had a special trick I used when I was “It.” I would close my eyes and say, “If I were Dan, where would I hide?” Then an image floated into my mind and I’d race to the hiding place. Half the time, I was right.

Do I still have “it?” I close my eyes and think, “If I were Mom’s glasses, where would I be?” The refrigerator comes to my mind. I rush into the kitchen and fling open the refrigerator door, only to see the usual chaos. But I’m hungry, so I reach for an apple. Behind the fruit is a pair of reading glasses, sprawled across the shelf.

Triumphantly, I take the glasses to Mom.

“These feel nice,” she says.

Not only has my mother reminded me of the importance of creativity, curiosity and play, but she also discovered a great summer time tip: chill your glasses and cool off your face.

Dementia Café: Connecting through Donuts and Baseball

 

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I’ve always enjoyed gatherings of creative people, so I was excited when I learned that Mandy Shoemaker was orchestrating a Dementia Café in our area. The premise is simple and fun: a group of people living with dementia, their care partners, and friends get together in a public space for a facilitated time of conversation, sharing, and creativity.

Mandy’s café took place in Lamar’s, a locally esteemed donut shop with a quiet atmosphere and a spacious seating area.  Eight of us gathered around a table and Mandy opened the conversation by showing us a black and white photo of a baseball player laying on a field, next to a fence, apparently knocked out.

“Babe Ruth,” she told us. “He was running backwards to catch a ball and crashed into the barrier.”

We all nodded in sympathy, then began sharing baseball stories. Charlie had played in his youth and he and his wife Barb were ardent Royals fans. Courtney had played softball in high school. Fran, who grew up in the 1930’s in rural Mississippi, never had a chance to play sports but she liked hearing about the game.

“Did you ever listen to baseball on the radio?” Mandy asked her.

“In those days, not everyone had everything,” Fran said. “I don’t think we even had a radio.”

Barb remembered being on her grandparent’s farm, huddled around the radio, listening to the Yankee’s games.

“Have you ever heard the poem Casey at the Bat?” Mandy asked.

“I memorized it at school,” Charlie said.

119AC655-C2E7-4B6C-A043-39E96D861200We took turns reading the dramatic poem, discussing such vivid terms as “when the dust had lifted” and  “Casey lightly doffed his hat,” and one ball player was a “lulu” while another was “a cake.” The tension built and we chanted the last verse together. (Seek out this poem if you want to know what happened in Mudville that day: www.baseball-almanac.com/poetry/po_case.shtml )

We then created a group poem, each contributing an answer to “Baseball is…”

I left the café feeling exhilarated and connected. Baseball was a catalyst for a great conversation that included life in the 1930s, family origins, Memphis, Elvis, baseball cards, Abbott and Costello, poetry, women and sports, fathers, hard work, radio programs, and more.

“It is our goal to create a more dementia-friendly community,” Mandy says. “Part of that is creating safe places for people with dementia to come and be a part of a group, with no expectations.  The café invites people to just get out, be creative, and have fun.”

The KC Memory Café will meet on the second Tuesday of each month. To keep up to date, follow our facebook page at www.facebook.com/KCMemoryCafe

 

Create Your Own Cafe

You can also create your own café for two or more. Here are a few tips:

Select a public meeting place that serves refreshments and is reasonably quiet.

Let go of expectations and create a supportive atmosphere. You are here to express yourselves and connect.

Pick a broad topic that you are both interested in. Examples include seasons, sports, nature, games.

Start with a visual stimulation, such as a photo. Ask open-ended questions that invite imagination, such as “What do you see in this picture?” or “What do you think is going on?”

Allow the conversation to flow. The topic is a mere catalyst for ideas and communication.

Print out a familiar poem to read together. Enjoy the drama of reading aloud and invite comments on the poem.

For more about starting a café, visit

http://www.alzheimerscafe.com/public.html.alzheimersatoz.com/Welcome.html

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

COMING SOON: CONNECTING IN THE LAND OF DEMENTIA: CREATIVE ACTIVITIES TO EXPLORE TOGETHER

 

Three Tips for Celebrating Mother’s Day When your Mom Has Dementia

“I don’t know what to do about Mother’s Day,” a friend recently told me. “I used to celebrate with my mother, but Mom doesn’t really recognize me now and the holiday won’t mean anything to her.”

My friend was not alone in her dilemma: according to the Shriver Report,  ten million women either have Alzheimer’s or are caring for someone with it.

I’d faced the same issue with my mom as she sank into Alzheimer’s. But I’d decided that celebrating Mother’s Day was important for me and for my family, even if Mom didn’t truly understand what was going on.

Here are three tips I devised for reducing the sadness this holiday can trigger and for substituting a celebration of renewal and connection.

Feel Your Frustration and Grief

The happy-family-candy-and-flowers Mother’s Day television commercials seemed to shout at me: “Your mother is no longer who she used to be!” That was true and a spike of sorrow stabbed at me as I mourned my “normal mom.”

Celebration: Talk about your feelings with empathetic friends; feel your grief and the frustration. Explore ways to express yourself, perhaps through journaling, collaging, stomping about. Or cocoon and immerse yourself in mournful movies and music.

Activate Your Appreciations

My mother could not complete a sensible sentence, cook a simple meal or dress herself. She did not know my name or remember any of my accomplishments or stellar qualities.

Celebration: Notice and appreciate the good in your situation. Even though Mom didn’t remember my name, she also didn’t remember any of my shortcomings. She was no longer critical of my parenting skills and no longer shy to show affection. She had a dazzling smile, a whimsical giggle and an ability to look into my eyes. She was content with who I was, whoever I was. These were qualities to celebrate.

 Celebrate Yourself and Your New Relationship

Since my mom could not care for herself, I learned to care for her. Our lives wove together and we became deeply connected, as I emerged from being just a daughter to becoming an advocate, spokeswoman and historian for my mother.

Celebration: On Mother’s Day, I stopped to celebrate myself, my flexibility, my sense of humor, my steadfast feelings of responsibility. I gave myself the gift of time and appreciation.

7 Ways to Concoct a Creative Celebration

Share favorite memories

Tell her favorite life stories

List her opinions, maxims and worries

Sing along to favorite family music

Muse over family photos

Serve up easy comfort foods

Share what you’ve learned from your journey with her

Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.                                                                                                                                                                                         COMING SOON: CONNECTING IN THE LAND OF DEMENTIA: CREATIVE ACTIVITIES TO EXPLORE TOGETHER

March Forth

It all began decades ago with the comic wrapped over the tempting pink square of Dubble Bubble. A sweet scent swept into me as I popped the gum into my mouth. While I chomped, the sugary juices swelling against my teeth, I read the riddle, neatly typed under the comic. “What is the only day of the year that tells you to go forward?” I had to twist the paper upside down to discover the answer: “March Fourth.” (March Forth!) Since that long ago moment, March Fourth has been one of my favorite days. Every year, I ponder, how am I going to march forth this year? How will I contribute to the world and how will I experience a meaningful and happy life?

This year I am learning a few creative lessons from several families of monkeys we met while visiting Costa Rica. These monkeys travel in groups, with a leader to show the way and a follower to make sure everyone gets safely on the tree-born trail. Often, the monkeys have to leap to the next limb, letting go before they’ve safely latched onto the next branch. They’re curious and if anything hints at being delicious or interesting, they scramble down to investigate. And they are not shy about sounding their voices.

 

Here’s a small monkeying around video and here’s a few of the ways I’m inspired to March Forth.

A delicious way to March Forth

I’m following the trail of my own curiosity.

I’m helping others find a path.

I’m letting go of the familiar when I can.

I’m making the most of what is right in front of me.

I’d love to hear about the people or animals that inspire you and I’m interested in any ways you’re going to March Forth.

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