Monthly Archives: March 2015

Let it Be: A Recipe for Counting Blessings

I wanted to share this story from Love in the Land of Dementia, a tribute to my mother and her beautiful capacity for wisdom. Here’s to embracing the divine flow of life.

Let It Be

For the first time, my mother cannot really help prepare our Seder meal. She wanders around the kitchen, pausing at the counter, the stove, the table as if to collect something lost.

“What was I doing?” she asks.

“Setting the table,” I say.

“How many people are coming?”

“Ten,” I say, spilling the spoonful of oil in my irritation. An old football cheer floats into my mind, first and 10“First and ten, do it again. Do it again.” And again. Mom has already asked me these questions several times in the last 10 minutes.

When Mom and Dad drove up two days ago, Dad’s face was tight and he went straight to the guestroom to take a nap.

“Sometimes I wish I were hard of hearing,” he told me, later that evening.

Mom’s speech is like an old record player with a needle that refuses to leave its groove. The simple anchors of life, the who, what, where, and when of things, often elude her.

“Did you remember the macaroons for dessert?” she asks, a fork in hand.

“Yes,” I say, again. I crack an egg and have to scoop shell out of the bowl.

I stir the matzo mixture and take a breath. I have trained myself to be brisk and efficient, but now, around my mother, I need to be slow and soft.

“How many people are coming?” she asks.

“Ten,” I say, impatience pinching my throat. “Let’s take a break and go for a walk.”

I wipe my hands and look for the house keys. They are not on their usual hook in the cabinet. They are not in my purse, or lolling on the kitchen table. I feel a brief flutter of shame over the impatience I felt just this morning, when Mom misplaced her glasses case for the second time. Then I feel a stab of fear: am I too losing my mind?

missing key“Have you seen my keys?” I ask my daughter, who comes breezing through, searching for chocolate to inspire her mid-term studying.

She stops, Hershey’s bar in hand. “They’re right in front of you, Mom,” she says, pointing to a huddled mass of metal on the counter corner. I pocket the keys and double check to make sure I have turned off the stove.

Outside, the redbuds are flowering; the dogwoods skirting newly green lawns. My mother and I walk past a closed-down lemonade stand, three broken lawn chairs,set out on the curb, and a blond, floppy-haired girl, skipping over a pink jump rope.

“It was hard when my mother died. My father just disappeared, took off walking,” Mom says. “He was a good man, though.”

I nod. I remember as much about my mother’s childhood as I do my own. The story of her mother’s death is one in a series of memories Mom has told me all my life.

We pass a woman strolling a sleeping baby and Mom smiles.

“Did you get the macaroons?”

“Yes, I did Mom.”

“Did I already ask you that?”

“Yes.”

“Your father gets mad at me sometimes,” she says. “He thinks I’m forgetting on purpose.”

“What’s it like to not remember?” I ask.

An eager black spaniel rushes up to us.

lost thought“I start a thought,” Mom says, bending to pat the dog, “and the end disappears. If I try too hard to catch it, that makes it worse. So I let go, and eventually I get the answer. Of course, by that time, something else is going on.” Mom smiles and shakes her head. Her hair is silvery and curly; her hands like fine dried flowers; her stride crisp and full.

All weekend, I have watched her happily listen to the conversations around her, passionately asking a question, then moments later, equally passionate, asking the same question. I have listened to her stories, which have the comforting familiarity of a well-worn quilt. These stories, which sprinkled my growing-up years, are now the major part of our conversations.

That evening, we celebrate Passover with a Seder service. As the service progresses, my father tells our guests about “Dayenu,” a Hebrew word that means, “Even that would have been enough.”

“It sounds like Die-aa-nu,” he says. “You repeat it after each of the sentences I’m going to read. It’s a way of expressing gratitude.”

My mother fiddles with the prayer book and asks for the third time, “Is it time for Elijah?”

“Not yet,” my father says, his voice tense. Then he calms and begins the Dayenu litany:

“If God had divided the sea without leading us onto dry land,”dayenu

“Dayenu,” we all repeat.

“If God had taken care of us in the desert for 40 years without feeding us manna,”

Dayenu.

“If God had fed us manna without…”

And so we follow the journey of our ancestors, promising we will be satisfied. With whatever we get.

As I repeat my gratitude and pledge my satisfaction with life as it is I think of my mother. I miss her remembering all the details of my life. I miss her knowing where the silverware drawer is. I miss telling her something I’m proud of and having her remember it. And yet, she is the living symbol of Dayenu, graciously accepting her failing mind and making the best of it.

“And now, it’s time to eat,” my father says.

My mother reaches over and pats my wrist. I see the patina of softness that burnishes her, the loving core that goes far beyond mundane daily detail. I see the woman who has loved me even during the years I wandered through a difficult wilderness.

As we sip our sweet wine and break off a piece of unleavened bread, I create my own litany:

If my mother gets pleasure out of life. . .

Dayenu

If she remembers who I am. . .

Dayenu

“This is a lovely Seder,” she says. “You did a beautiful job of putting all this together.”

I press her hand, look into her smiling face and say, “Dayenu.”

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

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Three Warning Signs and Three Simple Actions to Soothe Care Partner Breakdown

“I keep thinking I should do more to help Mom as her Alzheimer’s progresses,” a friend recently told me. “I visit Mom in Chicago every month but I worry that’s not enough. Yet I have my work and my family here in Kansas City. I’m torn in two and the stress is eating me up.”  worry cloud

It’s so difficult to be a long distance care partner. I was lucky: my parents moved close to me when Mom was diagnosed with dementia. Yet even though I was nearby, I shared some of the stresses my friend described. 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 mentally 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 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 and Spiritual

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.

“Care partners tend to push past their feelings,” Linda says.

Behavioral

concentration“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 energize you, and twenty minutes of daily meditation can 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

electrical bananaIs 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, 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.”

For more information about keeping your personal power and reducing stress, visit

drlindalmoore.com

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

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

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The Balm of Laughter: Bringing Light to Dark Thoughts

broadway musicalOn the stage, a lavish musical was unfolding, complete with booming orchestra, bold singers, and catchy choreography. I was watching the action but my mind was on a move we’d recently seen, Still Alice, which featured a brilliant 50-year-old woman with early onset Alzheimer’s. More accurately, I was analyzing what I would do if I had Alzheimer’s: the note I might carry around, asking for people’s kindness and patience if I should repeat myself or get lost … or I worried about the burden on my children and wondered if there would be a point where I’d  want to die. Then I thought about my mother: even when times were really tough and sad with my mom, I never wanted her to die; I never wanted to be without her company. Then I … Well, you get the idea; instead of enjoying a light-hearted Broadway road show, I was stirring up negative energy and stewing over uncertainties outside of my control.

At intermission, I reported these morbid thoughts to Ron. He listened carefully, then said, “Well, at least you can get a book out of this.”

I looked at him blankly. “What book?”

He looked right at me. “Well, instead of Still Alice, you can write Used to Be Deborah.

I burst out laughing; Ron laughed, and I was back in the present.

Ron’s comment had reminded me of one of my dad’s favorite jokes.

Warning: this joke is really not that funny but it stuck with me.

A man wanted to find out the meaning of life. He climbed a high mountain and consulted a guru; this sage guruman told him he needed a daily chanting and meditation practice. Every day, he needed to sit on a meditation cushion and first chant, “Sensa, Sensa, Sensa. “ for one hour.

Then he needed to intone, “Huma, Huma, Huma” for another hour.

The man did this and after two weeks of feeling more frustrated than enlightened, he returned to the guru and said, “It isn’t working. I’ve had no revelations and the whole exercise is about to drive me crazy.”

The guru stroked his white beard (My father’s gurus frequently sported long white beards) and contemplated for what seemed like 400 hours. After 30 interminable minutes, he said, “Well, my son, you are now ready to put these two sacred chants together.  First one, slowly, then the other slowly and build up to where you’re saying the hallowed words quickly, one after the other.”

The man hurried home, relieved to have a new assignment.

He intoned, “Sensa.” Then he chanted, “Huma.”

Faster and faster he chanted, until the two words blended into the true meaning of life, “Sensa Humor.”

How do we keep our “Sensa Humor” in the midst of uncertainty and chaos?guru joke

For me, it’s glorious groaning puns, wise and witty friends, and a willingness to laugh. How about you?

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

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Timeless Tunes that Transcend

“It’s really a very simple program, but the results are unbelievable. You watch the film Alive Inside and you think those are just the reactions they chose for the camera, but we really do see instant and unbelievable results from many of those we work with.”     Linsey Norton

Barrick Wilson of Wichita, Kansas, uses music to connect with his beloved wife Kristi.

Kristi showed the first signs of dementia in 2004, when she was only 60 years old. She was diagnosed in 2008 and three years later, Barrick took early retirement so he could care for Kristi fulltime. There were plenty of tough times as Kristi’s disease progressed and music helped ease the issues.  Often Barrick took Kristie for a ride and they’d listen to favorite songs as they tooled along.

Bad, Bad Leroy Brown was one of her favorites,” Barrick says.leroy brown

In the afternoons, they’d sit on the sofa and listen to Golden Oldies together, both singing along. Then Barrick learned about the Roth Project: Music Memories;” (which is similar to Music and Memory) and he signed Kristi up, working with the Central and Western Kansas office of the Alzheimer’s Association.

“I purchased a boxed set of Rogers and Hammerstein’s Broadway musicals, records her parents had listened to when Kristi was growing up,” Barrick says. “I included Jim Croce and Kristi’s grandmother’s favorite hymns.”

imgresBarrick worked hard to develop a playlist that keyed in on Kristi’s emotional memories; volunteers from the Alzheimer’s Association helped load it onto an iPod. Then Barrick had the pleasure of sitting next to Kristi and reveling in her beautiful smile when she put on headphones and heard Some Enchanted Evening.

“The music is a calming influence,” Barrick says.

Kristi is one of a couple hundred people enrolled in the Roth Project through the Central and Western Kansas office of the Alzheimer’s Association.

“Our staff offers counseling services to care facilities and to families as to when and how to use the iPod, “ says Linsey Norton, the Association’s Program Director. “We also help care partners notice behavioral cues that allow them to reach for the iPod headphones instead of the anti-anxiety medication. We are working with chapters nationwide to help them develop iPod therapy programs for families in their communities.”

Music helped Kristi when she needed to transition to a memory care unit. The staff offered her headphones and her favorite songs several times a day. Kristi got up and danced when Leroy Brown came on.

imagesBarrick is a pianist and has also incorporated the songs he used to play for Kristi when they were dating. During their courtship, he played the piano in her parents’ living room. Now he sits in the facility’s dining room, his wife by his side, and he plays I’m in the Mood for LoveIf I Loved You and My Funny Valentine. These classic love songs transcend rational thought and create an engineering marvel, a bridge that connects Barrick and Kristi.

Barrick shares this advice for care partners:

  • Find out as much about the disease as you can. Read, watch videos, become friends with the Alzheimer’s Association and listen to their advice.
  • Take your time putting together a playlist that will trigger positive emotional memories for the person living with dementia.
  • Be prepared to join the person with Alzheimer’s in her world. It’s like living in an improv theater; you don’t know what’s coming next.
  • Take care of yourself. If you need help, ask for it.

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

 

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Marching Forth on March 4th

“What is the only day images-3of the year that commands you to go forward?”

This was the riddle printed beneath the cartoon that cradled the fragrant pink piece of Dubble Bubble chewing gum. I sucked up the sweet gum juice as I read the answer: March Forth. (March Fourth.)Then I proceeded to practice the art of blowing a bubble within a bubble. But that vital bit of gummy trivia stayed with me.

March Fourth always seems like an important date, an unsung holiday.

imagesI tried everything in my power to encourage my first daughter, due on March 7, to emerge on that auspicious day, including taking a long walk and going on a bumpy Jeep ride. Alas, she lingered until the fifth.

Now, I celebrate the day by creating a collage that proclaims how I want to  March Forth through the year.  This collage may sing with travel photos or contain inspiring words or picture a best selling book or depict meaningful family relationships:I try to put my vision for my higher self on the page.

As part of this year’s March Forth, I have gathered some quotes that inspire and guide me and that I’ll be using to go forward during 2015. Here’s to Marching Forth towards living your life’s purpose.

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

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