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Posts Tagged ‘Relationships’

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.

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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. 

Expanding My Definition of Love

Love comes in so many magical guises. My journey with people who have Alzheimer’s has expanded and deepened my understanding of love. Here are some insights from others.

 

My friend Vicki always inspires and teaches me. She has early onset Alzheimer’s and her outlook is an embodiment of grace and spirit. She writes: “I have lost both friends and family members since I have dementia.  Some people are just so uncomfortable that they just cannot bear to see me go down hill.  I have lost a very good friend who just can’t seem to handle it.  I know that these people love me but they do not have the emotional fortitude to see the daily loss.  You will find out who really loves you when you get dementia because these are the people who will be there for you when you need them.”    — Vicki Stoecklin, Kansas City, Mo, retired designer

The True Meaning of Unconditional Love

Linda Fisher is a tireless advocate and a caring person. Her words really move me. “Caring for my husband Jim taught me the true meaning of unconditional love.  I became fiercely protective of him and learned to love him ‘as is’ without looking back on the man he had been or forward to the man he would become. My love for him continued to grow throughout the ten years of his dementia, as he became dependent on me to be his advocate in all aspects.”  —  Linda Fisher, Sedalia, Mo, retired office manager, Central Missouri Electric Coop http://earlyonset.blogspot.com Early Onset Alzheimer’s: My Recollections, Our Memories (2012)

The Full Range of Emotions

Kelly Sheet, founder of the SpunkyCaregiver, offered these deep insights: “I have learned that love transcends any words and appearances. When someone has dementia, love is shared through energy and feeling. You can be vulnerable with people who are living with dementia. And it is a relief to be so open. Day-to-day we are expending energy to protect ourselves from saying too much or too little or the wrong thing. The great gift of loving people with dementia is that you can let go of those ideas, experiment with what a full range of emotions actually feels like. Without being judged, you can laugh spontaneously at some goofy moment, dance with abandon or hold hands with a stranger. Loving people with dementia helps me to feel alive. The hundreds of seniors I have known over the years have really taught me how to love more freely.” — Kelly Sheets, Founder, Sisters, Or, www.TheSpunkyCaregiver.com,

Every person teaches us more about love.

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

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Learning about Love through the Dementia Journey

This month, I’ve been asking myself and others, What have you learned about love from your dementia journey?  Here are some of the profound answers:

I learned that it is redefined. I loved my mother as my parent, and then learned to love her as a child. And I would not trade that experience for anything.  Pamela J. Van Ahn, Executive Director at Caring Together in Hope, Inc., Atlanta, GA

I have learned that love remains, even as memory fails.  Long after your name is forgotten, there are still frequent glimpses of recognition that are very meaningful.  The Alzheimer’s patient does not become “a different person”.  They are much more “still there” than easily meets the eye.  With Alzheimer’s disease, things that have emotional context are remembered the longest, and love is a strong emotion. Max Wallack, research intern in the Molecular Psychiatry in Aging Laboratory at Boston University School of Medicine, Boston MA.  

I have learned so many lessons regarding love through my mothers journey with dementia.  Here are just a couple of them. There are multiple levels of unconditional love.  Each one is more precious and runs deeper then the next. “Letting Go” of our need to control is one of the most loving things we can do for a person with dementia and ourselves. Allowing a person with dementia to be in a loving respectful relationship, even if it might be with someone unexpected, is a gift to all and does not mean they love us less. Love runs much deeper than a name. We need to stop quizzing a person with dementia to check if they know and love us.  A name has nothing to do with the bond and connection between two souls.                                                                                                    Lori La Bey, Founder of Alzheimer’s Speaks , St. Paul, Minnesota, www.AlzheimersSpeaks.com  

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

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