Four Ways to Support Care Partners

We all know that wrenching feeling of wanting to support our friends who are immersed in being care partners but not understanding how best to help. Many of us know the feeling of being exhausted care partners and not knowing just how to ask for the help we need.

Mara Botonis, author of When Caring Take Courage, created a list of meaningful tips, captured in a note to friends from a care partner. I really appreciate her empathetic yet practical outlook and wanted to share a few of her ideas with you.

 

 

The Present in the Present

I so appreciate you wanting to help me, I don’t always have time to read a book, watch a movie, or accept your generous invites to restaurant meals or spa treatments. The best gifts save me time and energy and are a treat I can enjoy at home without arranging care. I would love a visit that includes a pre-made dinner we can share. Any of these thoughtful gifts would lift my spirits: a CD with my favorite songs, a favorite dessert or snack, a chance to play a favorite game with you, a soft cuddly blanket, or fresh flowers.

 

Write Me

Write me a note or an email. I can’t always talk on the phone or devote the time I’d like to an in-person visit.   I’m usually only “free” to socialize when my loved one is sleeping and even then, I am alert to his needs. If you write to me, I can read it when I have time to truly enjoy it.

 

Share Memories

Reminisce with me. I willingly and lovingly put another person first for most parts of my every day. Sometimes I feel like big parts of me get lost so please remind me of our earlier times together. You may be the only one I get to do this with.

 

Please Stay in Touch

You don’t have to worry about saying or doing the right thing. I don’t always know what that is either. Please just keep trying. Don’t avoid calling or coming over because you may be feeling uncomfortable or unsure. I feel that way too sometimes and I’m here every day. Please don’t forget about me. I’m still here. I still love you. We still need and want you in our lives. Please reach out. There isn’t any way you can interact with me that would be unwelcomed or wrong. Just keep trying. #

 

When caring takes courage

After thirty years working in healthcare throughout the United States, Mara’s life was forever changed when a close family member was impacted by Alzheimer’s.

Please visit her website:

Website: http://www.whencaringtakescourage.com/

Amazon: http://www.amazon.com/When-Caring-Takes-Courage-Compassionate/dp/1478730536/ref=tmm_pap_title_0?ie=UTF8&qid=1400634987&sr=8-1

 

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

Rock with Rhymes that Resonate

The audience was quiet, partially because some of the people were slumped over in their wheelchairs, eyes closed. Gary Glazner stood in front of the group, wondering if he could engage them. He had received a grant to offer a poetry workshop in a memory care unit and he had carefully selected several familiar poems. He’d introduced himself to everyone and he was ready to inspire people through reading poetry. But were they ready for him? He took a breath and began.

“I shot an arrow into the air,” Gary said to the seemingly comatose group.

“And it fell down I know not where,” said an elderly man without even raising his head.

That was the beginning spark for Gary Glazner’s Alzheimer’s Poetry Project, a process he created to help engage and connect with those living with dementia through reading aloud and discussing poetry.

“There are four steps to the process,” Gary explains. “First, a call and response, where I read a line of poetry and the group echoes it. Then we discuss the poem. Next, we add props to the experience and finally, we create our own poem.”

A few of the familiar poems Gary uses include:

The Tyger—William Blake

The Owl and the Pussy Cat—Edward Lear

Wynken, Blynken, and Nod—Eugene Field

How do I Love Thee?—Elizabeth Barrett Browning

Purple Cow—Gelette Burgess

Jabberwocky—Lewis Carroll

Daffodils—William Wordsworth

 

His website, www.alzpoetry.com, is brimming with verse and rich with recommendations.

Gary has shared poetry with people living with dementia all over the world. His usual session lasts around an hour. He often centers his poems on a theme, such as Summer, Birds, Trees, or Food, and enriches the gathering with objects that engage the senses. For example, to supplement summer-time poetry, he might include a bucket of sand and a conch shell. He brings a misting spray to simulate an ocean breeze and lets people smell suntan lotion. For refreshments, he suggests fresh strawberries, lemonade, popsicles, or homemade ice cream. This four-step poetry process also works at home with just two care partners

“Poetry goes beyond the autobiographical memory and offers care partners a way to communicate with someone who has memory loss,” Gary says.

Good news for the Kansas City area: Gary is doing a poetry workshop here in early October. For more information, contact Deb Campbell at kcseniortheatre@gmail.com

For more information on Gary and the Alzheimer’s Poetry Project, visit www.alzpoetry.com 

Gary’s book is a great resource: Dementia Arts: Celebrating Creativity in Elder Care

www.dementiaarts.com/

Dementa+Arts+Book

 

 

 

 

 

 

 

 

 

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

 

 

 

 

Setting the Table with Memories

Imagine sitting down for your favorite growing up meal. The sight, taste, and aroma of those hallowed childhood dishes would stir up a cornucopia of delicious memories.

Recently my friend Elizabeth cooked such a meal for her husband Charlie, who is living with early onset dementia. Charlie grew up in the 1950s, so Elizabeth bought a period cookbook. She and Charlie read through the recipes to see which ones he resonated with.

“I will cook your favorites and we’ll invite a couple of your old friends from high school over for dinner,” she told him.

Elizabeth is a terrific cook and Charlie loved this idea. They analyzed the potential entrees, Beef stroganoff, chicken Cacciatore, meatloaf, but Charlie kept returning to one page: the recipe for Johnny Marzetti Casserole.

At first, Elizabeth demurred. As an accomplished cook, she didn’t like the idea of serving guests such a simple meal. But Charlie was persuasive, so she bought ground beef, canned tomatoes, cheese, and elbow macaroni. She cooked up a big pan of Johnny Marzetti, otherwise known as goulash, American Chop Suey, or macaroni and beef.

Charlie and his friends went wild over the food and laughed as they shared memories of school, the neighborhood, their families, and favorite foods. The cookbook, the meal, and the cook were a huge success.

Next on Elizabeth’s list: take pictures of Charlie with his favorite dishes and paste them in a scrapbook along with the recipes.

 

What are some of your favorite childhood meals?

For me, the desserts were most important. I adored cream horns, Mrs. Smith’s Lemon Icebox Pie, and Mom’s brownies and chocolate cake, particularly the icing. We still include Mom’s memorial brownies, courtesy of my brother, Chef Daniel Barnett, at family gatherings.

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

Three Star-Studded Tips: The Creativity of Being a Care Partner

 

“For my part I know nothing with any certainty, but the sight of the stars makes me dream.”   Vincent Van Gogh

Several years ago, we spent an evening in Zion National Park in Utah looking for shooting stars.

“There’s one,” someone said.

“I see it!” someone else said.

I saw only the regular stars, which were also gorgeous but not quite as exciting.

“I can’t see any shooting stars,” I finally confessed.

“Here’s how you spot a shooting star,” our friend Ron told me. “You soften and widen your gaze and stare off into the middle distance. You’re looking at everything and nothing. That way you’re open to that sudden flash of light and movement.”

I didn’t see the flash of light from a shooting star that evening, but I did have an idea flash. Looking for shooting stars is like inviting out creativity. You open up your focus, relax, put yourself in receiving, daydreaming mode and wait for something marvelous.

 

For me, the art of being a care partner was an exceedingly creative endeavor. Much of the time was fraught with focus, dedicated to detail. But when I remembered to soften and widen my gaze, I was able to see my mom for the star she was, even when she seemed light years away from me.

 

Here are some tips for your own personal “star-gazing:”

Sit quietly with the person living with dementia. If appropriate, hold hands.

Let go of  your history and your expectations. Appreciate her just as she is.

Open your mind and heart: be receptive to whatever flashes of light may come your way. Be happy even if you think nothing particular has happened.

For me, this was a rich way to connect with Mom when she was without words. Just sitting still renewed me, and ideas and memories often bubbled up.

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