It Just Takes One Word to Make a Conversation: An Unexpected Halloween Treat

On my mother’s last Halloween, her memory care unit held a party. Pam, the nurse, brought a basket brimming with hats, shawls, and scarves. Pam set a floppy white hat on Mom’s silvery curls and draped a lacy purple shawl over her shoulders.  In her new adornments, Mom looked both puzzled and happy.

But during the “treat” portion of the Halloween celebration, which featured M&M’s and chocolate chip cookies, Mom’s smile was unambiguous.  All her life, Mom had adored sweets and her Alzheimer’s had not dimmed her enjoyment.

Then small children paraded through the facility, dressed as princesses, witches, super heroes, and ghosts. Volunteers handed the residents wrapped tootsie rolls.

“For the children,” they said.

Mom smiled at the adorable kitty cats and pirates who chanted “Trick or treat,” in wispy voices, but she did not relinquish her hold on the sweets; she did not share her candy.

“Mom, would you like to give the children some of your candy?” I asked as my mother gripped her treasure.

“No,” she said.

No. The word floated through my mind and I gazed at Mom, my mouth open, my mind euphoric. Perhaps I should have been chagrined at her selfishness but instead I was thrilled that she had actually responded to my question. It was the closest we’d come to conversation in weeks. I laughed with delight. Mom laughed.

For that moment, we were two women, simply laughing. For me, it was a most wondrous and unexpected treat.

               

 

                                   Q 4 U:       

Please share one of your unexpected treats.

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Beware of Caregiver Breakdown: Three Warning Signs and Three Soothing Actions

My stomach hurt most of the time. As I dashed around the house, getting ready to go see Mom in the Memory Care Unit, I frequently bumped into furniture. I found myself drifting away during meetings and unable to concentrate when I sat at the computer to write. And even though I had wonderful, supportive friends, I often felt an aching loneliness. Later, I learned these were normal symptoms of caregiver’s fatigue.

I asked my friend Linda Moore, psychologist, community leader and author of the newly released book, “What’s Wrong with Me?” to tell me more about recognizing and managing such exhaustion.  Here are some of her insights.

Three Areas Where Stress Screeches You to a Halt

 

Physical

“Your body is the early warning system,” Linda says. “But most people try to ignore the on-going tiredness, low energy, muscle spasms, unfamiliar aches and pains, and GI issues.”

Emotional

Often, after I’d spent hours solving problems around Mom’s care, I had a heavy feeling of disconnection and a dull anger. Nothing mattered and I felt sad, rootless and lonely. But I kept going. Caregivers tend to push past such feelings.

Behavioral

“Poor concentration is one common sign of stress,” Linda says. When friends say, “You’re just not acting like yourself,” it’s a cue to slow down and drink a cup of soothing tea, read a short magazine article, or phone a friend. Other stress symptoms include procrastination and isolating yourself.

Fight Breakdown with the MEE Plan

 “Meditate, even if it’s just for a minute,” Linda advises. 

Sit quietly, count to four as you breathe in and count to six as you breathe out. Watch your thoughts wiggle around. One minute of meditation calms you; five minutes energizes you and 20 minutes of daily meditation can really center you and give you a greater sense of well-being.

Exercise

“Everybody knows it works and no one wants to do it,” Linda says. Even when you’re so tuckered out that your fingernails feel heavy, movement matters. Five minutes just walking around the house or prancing around to “Dancing Queen” can ratchet up your energy. Fifteen minutes of walking can lift your mood. Even a jog up stairs or unloading the dishwasher can shift your energy.

Eat healthy.

Is a banana really as delicious as a dark chocolate truffle? Many would say no. But most would agree, the banana is better for you. Even if you often eat on the run, choose fruits and vegetables to snack on. Throw in salads, whole grains, soups and nuts. And don’t forget the truffle: be sure you indulge every so often in a comfort food you really adore.

Lastly, Linda advises, “Don’t give away your personal power: ask for help when appropriate and learn to say no.”    #

Dr. Linda Moore is a psychologist, author, speaker and consultant in Kansas City.  She specializes in the psychology of women, stress management and leadership.  

Q 4 U

I bump into furniture when I’m stressed. What are some of your stress signals?

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Creative Listening in the Land of Dementia: Three Innovative Ways to Enjoy Repetition in the Caregiver’s Journey

Pretend you are editing a story, acting in a play or practicing for a concert.   

You go over the same material again and again, seeking nuances, sinking deeper into the art form, hoping to find additional meaning. You integrate the piece into your heart and mind.

Imagine what would happen if you could bring that same set of creative thinking to the story your memory-impaired father just told you for the 112^th time!

Listen in a New Way

That was my task during a particularly repetitive period in my mother’s Alzheimer’s: learning to appreciate each telling of the same tale, knowing the story was an important part of Mom’s life and that later, the story might disappear.

My friends Meg and Jim helped me by saying, “We loved sitting by your mom and hearing her WWII stories. She was really courageous.”

I felt a flash of pride and a flush of shame; those were the very stories I was so weary of.

I decided to listen to her stories in a new way, seeing what I could learn about Mom from careful, loving listening. I challenged myself, asking these questions:

What does the story say about my mom?

As I listened anew to Mom’s story of serving as an Army nurse in Iceland, living in a Quonset hut and skiing over to nearby hot springs, I practiced seeing Mom as my friends had seen her—an adventurous, patriotic, curious, and caring person. I realized I had started taking these qualities for granted!

How can I use the story to build a conversation with Mom?

From studying creative people, I realized that embracing limitations can actually inspire creativity. “We need to first be limited in order to become limitless,” says artist Phil Hansen. Filmmaker Martin Villeneuve says, “If you treat the problems as possibilities, life will start to dance with you in the most amazing ways.”

There’s an art in coloring inside the box. I experimented:  

How many times could I answer the same question in a different and interesting way?

How often could I ask a new question about a familiar story?

What unique comments might lead us to another conversation?

How can I use the story to connect Mom to others?

Sharing the story meant sharing the marvelous qualities of my mom and celebrating her rich history. I wrote down her oft-repeated story and sent it to my relatives. When friends asked me how Mom was doing, I told them and I added in the story. This widened and enriched our conversation, taking the focus away from Alzheimer’s and concentrating on my mom’s stellar qualities.

*****

Q4U

What is one of your signature stories?

Six Spiritual Practices For Living with a Diagnosis of Dementia

Normally, you can put my friend Vicki Stoecklin in any city and she will easily get her bearings. From Paris to Dubai to Marrakesh, Vicki is used to working in and making her way around foreign countries.

So, at age 58, when she started getting lost in her own city, she knew something was seriously wrong.

Vicki had been plagued with a series of chronic physical ailments and she figured she’d deal with whatever this new issue was.

But she was caught off when the neurologist said bluntly, “You have dementia.”

“What am I supposed to do?” Vicki said.

“Live your life,” he said.

Learning to Live with Dementia

Initially, ”living life” was a huge challenge. She had trouble remembering where she’d put things; her feelings were disoriented. She could no longer drive and or do simple math. Her vision played tricks on her: she saw black holes where there were none. And she felt isolated from her community and friends.

But Vicki had a wealth of inner strength and resources. When she told me about her spiritual practices, I was inspired and moved. Here are a few of the ideas she uses to center and care for herself.

Learning Self-Compassion

“I learned to have compassion for myself,” she says. “If I’m having a hard time concentrating on a book, I stop and do something comforting, instead of pushing myself.”

Using Family Treasures to Encourage Contemplation

Vicki enjoys contemplating her grandmother’s hand made quilt, which hangs on the wall of Vicki’s meditation room. “She probably had Alzheimer’s when she stitched those squares together,” Vicki says.

Inviting out the Inner Artist

Vicki uses crayons, watercolors, and colored pencils to explore her own artistic process.

“My depth and visual perception is off, so my work is abstract,” she says. “I also find it meditative to color labyrinths and mazes.”

Opening the Heart to Spiritual Texts

Vicki has a number of trusted books she calls upon.

One favorite is Peace in the Storm: Daily Meditations and Prayers for Those Affected with Chronic Illness.  

“This book has been a great support to me,” Vicki says. “It’s about finding your relationship with God during the challenges of ongoing illness.” Another book that spoke to Vicki was Proof Of Heaven by Eben Alexander, a neurosurgeon who writes about his near-death experience. She also frequently reads Psalms.

Praying With and For Others

Vicki has a small box that she puts little prayers in for her grandson and her daughter. She has become a chaplain at her church and often prays for others. She also finds comfort in using the 24-hour prayer service at Silent Unity

Documenting Her Life Story

She has created two memory books — one for her work and one for her life. “These books are also reminders of the many happy memories over my lifetime,” she says.

*****

Q 4 U 

What are some ways you incorporate spirituality into your life?

If you’d like to contact Vicki, you may email her at Vicki vickiwhllg@aol.com

Hearing the Real Meaning: The First and Last Words

Several years ago, Ron and I went to Italy. Every night, I sat up late, taking notes in my travel journal.

Five nights into our trip, Ron asked, “What are you writing? Are you describing the churches we saw today, are you waxing lyrical about the vineyards and fields?”

“No, I’m making a vocabulary list.”

You see, before we left on our trip, we took 12 Italian lessons. I was keeping a list of words I had spoken or understood. I wanted to find out how much each word cost and if our Italian lessons had been worth it. In five days I had only used 50 words—each word from my lips costs more than a bottle of mineral water and less than a glass of wine. I realized I had to be increasingly outgoing if I wanted to make the most of my Italian.  

People’s faces lit up when I tried speaking their language, even when I asked something simple, like, “Where is the bathroom?”  One dark evening when we were hopelessly lost, we stopped at the only establishment that was open on the narrow winding road: a bar. I walked in and asked, “Where am I?” in Italian. That one awkward, existential sentence resulted in a kind couple offering to drive ahead of us and lead us to our hotel.

By the end of our trip, I had used or understood 200 words and I had connected with many people. The cost was measurable—the results were priceless. 

Just like my first words of a new language offered me rich connections, my mother’s last words were deeply meaningful. I wrote about this in my story, Words, to the Wise.

Mom is in bed when I visit one afternoon, her eyes open, her hands twisting the blanket, like a kid who’s had enough of her nap. She smiles when I walk in.

“Hi, Mom, how are you?”  I certainly expect no direct response from Mom, but the greeting makes me feel normal.

“How are,” she says and I feel a little thrill at this social nicety.

“I’m fine, Mom. How are you?”

“I know what you mean,” she says, staring out towards the hallway.

I am excited by Mom’s pointillistic little monologue. Alzheimer’s has erased most of Mom’s considerable vocabulary and this spill of words is a treat. As I stroke her arm and smile at her, I realize I am literally listening to my mother’s last words.

In the movies, the last words are profound gems of wisdom, uttered upon a deathbed. Those words are a raft to hang on to so you don’t drown with grief. Though my mother is lying in bed, she is definitely not dying. In fact, given her vast years and advanced Alzheimer’s, she’s relatively physically healthy.

“Well we item” Mom says. “All right”

She no longer needs a listener’s approval. She no longer checks for understanding. The words spill out, like the random winnings from a nickel slot machine.

“So, but that’s,” Mom says, as I touch her leg.

“Why.”

“Oh.”

Each word is an independent contractor, a one-act play. Mom’s words require interpretation, involvement, imagination and curiosity. Unlike last words in a deathbed scene, Mom’s words do not neatly sum up her life or her philosophy. Still, these words are gifts. Many visits have gone by with the barest scraps of language. I get out my pen and paper and write down every one of my mother’s last words.

As I write, I imagine she is giving me a secret code, sending me a message from the last cognitive bastion of her brain. “I don’t know. I paid. I’ll try.” What depth, what meaning, what spiritual significance these simple phrases might have!

*****

Q 4 U

Are there times when a few words have made a big difference?