Monthly Archives: July 2014

Turning Remembering into Caring

“I am sitting here now as you doze, not in case you remember me, but because I remember you.”  Sitting with Grandma by Gail Rixen, from the book Beloved on the Earth: 150 Poems of Grief and Gratitude

So many times I sat with my mom in the activity room of the Memory Care Unit, sharing stories of my life. I gazed at her but no longer hoped she would look at me or  pay strict attention to my what I was saying. I simply let the flow of words, the depth of our share history and the steadiness of my love for her connect us.hands

Recently, I was touched by this post written by Michelle Remold in Lori La Bey’s fascinating blog, Alzheimer’s Speaks.  Michelle’s story offers another look at the beauty of using remembrances of  a shared history as a way to connect.

“We would visit my grandpa every weekend. Even when he slept, we would spend at least an hour sitting with him and would reminisce about things he used to do with us. We would even send him postcards when we went on trips, not so that he would remember us, but to show that we were thinking about him.

I didn’t go visit him in hopes that he would remember me, but instead because I remembered him and visiting was a way to be with him and to relive the moments and create new memories. Even when he no longer knew who I was, I would run to him, take his hand and we would walk together. Even as I got older, whenever I would talk to him, he would smile. I would sit with him and tell him about my week and everything that was going on. There is no doubt in my mind that deep down he knew me although I never was hopeful he would remember my name. I remembered him in a way that would never be replaced.”

 “We do not remember days; we remember moments.”  ~Cesare Pavese, The Burning Brand

To learn more about Alzheimer’s Speaks, please visit:

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



Filed under Caregiving, Communication, Inspiration, Relationships

Eight Ways to Spark Up Communications with a Person Who has Dementia

Some days when I visited, I tried everything to get Mom’s attention and communicate with her. Of course, I tried talking.  When that didn’t interest her, I gazed into her eyes or waved my hands to pique her curiosity or touched her arm to let her know I was there. I know how challenging it can be to have meaningful communication when someone is deeply forgetful and I am most grateful for this excellent article by Karen Love. Karen is a founder of CCAL, a non-profit national consumer advocacy and education organization.

Here are excerpts from Karen’s article:

touchingDid you know that spoken words only account for 7% of communication?  The remaining 93% of communication is conveyed through body language, vocal tone and pitch. Communication style becomes especially important when someone in your life is living with dementia.

Here are a few tips for better communications:

Stand at eye level in front of them so they benefit from seeing your body language and facial expressions. Slow your speech down because their brains process information more slowly.

Don’t interrupt: take time to listen to the person’s response. If they are especially stuck on a word, kindly supply the word and see how they react. If they don’t appear to want the help, let them manage on their own.

questionsAsk one question at a time and ask questions that require simple yes or no answers.   For instance, “Do you want scrambled or fried eggs this morning?” instead of “How would you like your eggs this morning?”

Where possible, supplement your communication with visual cues. Smile often, not only because it conveys warmth and caring, but also because smiling can make you feel better too.

Touch is a powerful communicator.  When used positively, touch can convey caring and warm feelings.  It only takes a moment to offer a pat on the shoulder or a gentle hand squeeze.lions

Phone calls are especially challenging for someone who has dementia because the only communication cues they receive are words (7%) and vocal tone and pitch (38%).  Limit phone conversations to a minute or so and say something positive like, “I was thinking of you and just wanted to call and say hello.”   Consider using Skype or another one of the visual software methods on a computer, tablet or iPad to communicate.

Spend time together in companionable silence.  It can be exhausting for someone living with dementia to continually process communication.  Sit across from the person or at 90 degrees so they can easily see you.

Lastly, be aware of how you are communicating and whether it is having desirable results such as smiles, nodding, and looking contented, happy, or relaxed.   If not, review your style to see if you should adjust an aspect of your technique.


To learn more about Karen and her organization, please visit:

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


Filed under Caregiving, Communication, Creativity, Relationships

Many a Quote to Keep us Afloat

fantastiksPlease God, Please, don’t let me be normal!”

When I was growing up, my friend Susan and I often chanted this line from the Fantastiks. For us, normal meant mundane and we envisioned ourselves living daringly on the creative cusps.

During my time as a family caregiver, I often yearned for more of that mythical “normal.” Yet, I also wanted to be connected to my creative spirit. These are some of the words of wisdom that I used for infusions of inspiration. I’d love to hear from you: what quotes keep you afloat?

“Be recklessly generous and relentlessly kind.” Pam Grout

“It’s never too late to be what you might have been.” George Eliot

meditating“May all beings be happy. May all my thoughts, words and actions contribute in some way to the happiness of all beings.” Lokah Samasta Sukhino Bhavantu:

These two quotes remind me to open my heart and dream.
“My great hope is to laugh as much as I cry; to get my work done and try to love somebody and have the courage to accept the love in return.” Maya Angelou

“Twenty years from now you will be more disappointed by the things that you didn’t do than by the ones you did do. So throw off the bowlines. Sail away from the safe harbor. Catch the trade winds in your sails. Explore. Dream. Discover.” (Mark Twain)sail away

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

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The Power of Music: Transforming Life for Those with Dementia

The idea is simple yet profound.

Make a list of favorite songs, tunes connected with people, places, and good memories.

Put the songs on an iPod.

Connect headsets to the iPod, to minimize distractions.

Start the music and watch how it lifts and invigorates the person with dementia.

music headphones


Dan Cohen of Brooklyn, NY, created this Music and Memory program several years ago. Click here for an inspiring video showing the power of this program.

The Heart of America Chapter of the Alzheimer’s Association launched this exciting program on June 28, at an event at the home of Kansas City Philanthropist of the Year and Entrepreneur extraordinaire, Benny Lee. Ron and I were honored to present a music- themed story; Benny accompanied us on the clarinet.

Michelle Neidens, Education Director of the Association, spoke eloquently on this subject and I wanted to share parts of her moving talk with you.

For more information about this program, you can visit or you can contact the Association by calling 913-831-3888. They are seeking volunteers and contributions so they can help hundreds of people in our area.

d and r

benny lee








Here’s a portion of Michelle’s talk:


Music and Memory

We learn early on not to put all our eggs in one basket.   True of finance, true of friendships, true of information sources and true of skills. Who would have ever assumed that it is also true of the brain? There are lots of things that disappear in Alzheimer’s including a bunch of things that we wish would have hung around.   Some of the stuff that disappears we are okay about – like the part that tells us we can’t be an artist, or the part that stops us from telling people we care about them.

But diversification is important in Alzheimer’s disease. Music, as it turns out, involves multiple brain functions. It requires integration of rhythm, and memory regarding words and tunes. For many it requires translation in physical action – toe tapping, clapping, dance and even more complicated, playing an instrument. It requires us to make a decision whether we like it or not and more than we realize, we ascribe feeling to it.  Music and other arts and spiritually-based experiences thus becomes ‘soul pieces’ and they are sustained the longest in the disease.

Dan Cohen’s Music and Memory program recognizes the sustained impact and importance of music, but takes it several steps deeper; it acknowledges that music is attached to memory beyond words and tunes. Far more importantly, it gets attached to the people, places and experiences, which in turn serve as a conduit to positive memories.

music and memory

Mr. Cohen, in response to seeing people spend large amounts of time sitting disconnected and alone, began to utilize iPods with personalized playlists. He interviewed the individual, their family and others to create these playlists – not just songs that the person liked, but songs specific to good memories. Songs attached to people, places and experiences that could be triggered. This is an extremely important distinction.

For example, when I was growing up, my grandmother had a stack of sheet music and periodically she and I would go through the stack and sing the songs, the most remembered being Mairzy Doats (Mares Eat Oats).   I thought it a very odd song and it always made me smile. To hear that song is to connect me with the sights, smells, sounds and feelings of my grandmother’s house. Impossible Dream would be on my playlist – very attached to the shared appreciation felt by both my mother and me of the character Don Quixote – strong enough to keep trying and to keep reaching even when the outcome didn’t validate the quest. The Leonard Cohen song  Always would be on the list, as would The Brandenburg Concertos and Pachelbel’s Canon … There are so many others – all attached to key people, places and experiences.elder on headphones 2


Ever since I learned of this program, I’ve been thinking about my own personal playlist. I would include Summer Place, the Peer Gynt Suite, Getting to Know You, and Dancing Queen. How about you? What is the music that connects you to yourself, your memories and to the world?

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


Filed under Caregiving, Communication, Creativity, The Arts

The Ringing of Freedom

4th of july

When I was growing up, in the 1950s, the Fourth of July was a true day of freedom. We had a huge family picnic at our relative’s house. The festivities included a swimming pool and in a neighborhood without fences, which meant we kids could run breathlessly through the yards, chasing each other, playing tag, baseball and hide ‘n seek.

But first, we politely greeted our relatives. Then our aunt said, “How about a drink?” to my parents. And “Kids, there’s sodas in the cooler.”

That’s when the freedom began. My younger brother Dan and I, normally allowed to drink only juice and milk, eagerly surveyed the array of icy sodas and we both chose Grape Nehi.

Quickly we were swept into a game of tag. Some of the kids were already wet from swimming and others still wore shorts. Underneath our clothes, Dan and I had on our bathing suits and were ready to leap into the pool and get immersed in a game of Marco Polo.

The adults were busy with drinks and conversations and no one admonished us to be quieter, slower, or more polite. We were a band of glowing energy, sweating with the joy of freedom and racing to escape being IT. We were a burst of independence, throwing off our shorts and t-shirts and cannonballing into the pool, shrieking, splashing, and laughing.

picnicAfter several hours, the women beckoned us over. We dropped onto the lawn and ate ravenously off drooping white paper plates loaded with baked beans, hot dogs, corn, cole slaw, and potato chips. Then we spit watermelon seeds at each other. Finally, we sated ourselves with rich chocolate cake.

By then, the fireflies flickered and glowed. My uncle handed out sparklers without even warning us to be careful. Those dangerous sulphury sparks thrilled us. We raced about, a sparkler in each hand, writing our names on the sky, streaking across the dewy grass, leaving a trail of smoldering light behind us.

When the evening darkened, my uncle set up the fireworks. We sat on blankets, this time with our families. We were smudged, sweaty and stained with watermelon juice and dirt. I leaned against Mom and my brother snuggled next to Dad. As the fireworks spurted up into the sky, we pressed our hands against our ears, while brilliant layers of light and noise burst around us.

“God bless American,” my father said.

“America,” the adults echoed, their voices hushed and reverent.

Only later, when I was older, did I realize the true significance of that holiday to my family: my relatives were all first generation Americans—and on that day, especially, they were so grateful their parents had escaped the tyranny and religious persecution of Poland, Russia, and Hungary and had come to this welcoming land.

But that night, I was simply sated in my own child-like version of independence. Dan and I leaned against our parents and let the sounds of freedom ring us to sleep.flag-fireworks1

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

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