Archive for February 2015
Four Insights for Connecting with Cooking
“Mom, are you ready to help me make your famous meatloaf recipe?’ Stacy asked. Stacey was in town for the weekend, visiting her mom, Alice, and giving her sister a break from caregiving.
Stacy had wanted to take Alice out to eat, but her sister told her, “Mom can get pretty overwhelmed and confused when she’s around a lot of people. Why don’t you stay home and cook with her?”
Her sister was a nurse and seemed at ease with Alice’s diminished memory. But Stacy bit her lip when her sister suggested cooking.
“Think of a family recipe,” her sister advised. “Get all the ingredients organized beforehand and make sure the room is quiet and Mom has a comfortable chair. Once Mom gets started, she can do quite a bit. Just don’t rush her.”
It just so happened Stacy had been craving her mother’s famous meatloaf. That evening, she watched the news while she laid out the bowls, utensils, and ingredients on the table.
“A feast!” Alice exclaimed, as she shuffled into the kitchen. Stacy clicked off the television and said, “It will be a feast, Mom. It’s your meatloaf recipe. Will you help me make it?”
“You used to help me. In Provincetown,” Alice said.
Stacy’s eyes misted. Sometimes her mom didn’t seem to know who Stacy was and when that happened, Stacy could barely breathe.
“You stood on a chair,” her mom said.
“Wearing Grandma’s apron.” Stacy could see the apron, a frilly flowered chintz with a red ribbon sash.
“This is your grandmother’s recipe,” Alice said. “She lived in Boston, you know, with her older sister.” As she reminisced, Alice cracked and whipped the egg. Then she poured the mixture onto the beef and blended it in with her hands. She sprinkled the breadcrumbs into the meat, added a handful of her secret ingredient—raisins– and plenty of pepper, then mixed it all together.
Stacy gave her mother the pan and Alice expertly shaped the loaf. Then she noticed her messy hands and wiped them on her slacks. “Am I eating dinner with you? Where is the other one?”
“She is out with friends tonight. And yes, you are eating dinner with me.”
“What time will your father get here?”
Stacy looked carefully at her widowed mom and wondered what she should answer.
“It’s just you and me tonight, Mom.”
“Don’t forget the parsley,” Alice said.
While the meatloaf cooked, Stacy brought over some bread dough she’d thawed earlier. Alice had been a phenomenal baker and Stacy still remembered the scintillating taste of her mom’s cinnamon rolls. When Alice saw the dough, she began to knead it. As she kneaded, she talked about the types of bread she’d made when she was a girl. “Even sourdough,” Alice said. “Our cousin brought a starter from San Francisco and we were all a buzz.”
“Which cousin, Mom?”
“Oh that Gertrude. You remember her, always dolled up and always flirting with the men. But she could bake a good dinner roll.”
“What was your favorite thing to bake?”
Alice slid her hands over the rolling pin and rolled the dough thin. Then she tore it into little tadpole shapes, one of their favorite childhood treats.
“Remember, Stacy doesn’t like hers burned,” her mom cautioned.
Stacy smiled.
Even though her mother ate little and fell asleep at the dinner table, Stacy felt like the evening was a success.
“Cooking together can help family members connect in the kitchen,” says Kate Williams, LMSW,Care Counselor/Social Worker, Henry Ford Health System Collaborative, Alzheimer’s Association Greater Michigan Chapter. “The act of preparing food can draw on long term memory and trigger activities people have done in the past.”
Since the care partner needs to make meals anyway, working together offers a low-stress way to accomplish a task and a chance to relive family and food memories. People want to be useful and have a purpose; Kate believes creating food for and with someone meets that need.
For a successful cooking experience, Kate offers these tips:
· When designing cooking activities, consider the person and their current skills. Make sure the number of steps is appropriate to his or her level of memory loss.
· Give them as much independence as possible and be ready to help as needed.
· Create an environment with few distractions.
· Prepare the food and cooking utensils, so everything is at the ready. If possible, using the same type of equipment they used in the past.
Even for those who can’t really follow directions, the sensory experience of handling food can be connective and comforting. Cooking projects engage the senses, invite memories, offer a sense of completion and purpose, and are nurturing for both care partners.
Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.
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Rhymes that Resonate: Four Steps for Connecting Through Poetry
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. He created this process, which includes reading aloud and discussing poetry, to engage people living with dementia.
“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.
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
Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.
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Appreciating Who We Are
A man who is living with Alzheimer’s strides onto the stage and people applaud wildly. His son leans across the drums and hands him his guitar. His daughter, poised on the banjo, subtly reminds the man to look at the monitor so he can remember the words to the songs.
Everyone on stage is tuned into making the performance a great experience for the man and everyone in the audience is eager to hear from him. “So what if he sings Rhinestone Cowboy twice,” says one fan.
This scene is a snippet from Glen Campbell’s documentary, “I’ll Be Me.” As I watched Glen connect through his familiar music and bask in the support of his family and fans, I wished that every person could be so supported and celebrated, particularly those who are living with dementia.
As we approach Valentine’s Day, I wanted to share this essay about appreciating each of us for who we are. For me, it’s a reminder to celebrate love and the creative spirit in all their glorious guises.
Please Take a Bow
By Deborah Shouse
The stage thrilled with activities. One man juggled 12 balls. From overhead, a woman floated down on streamers of royal blue fabric, and then wound herself back up to the arena ceiling. Lithe performers dressed as jungle animals danced and tumbled. I sat in the audience, awed by the amazing creativity of Cirque de Soleil. I hardly knew where to look, so much was going on. But one performer consistently drew my attention. A woman dressed as a wood nymph walked around pointing to whichever feat she most admired. As a man juggled dangerously long sticks, the nymph held out her arms toward him, her gesture saying, “Ta da, Look at this!”
The singer burst into an acrobatic aria and the wood nymph ran towards her, unfurling her arms in another “Ta Da” gesture, focusing our attention and directing our applause. One act after another somersaulted, soared and danced and the wood nymph was always there to shine extra attention on them.
Afterwards, I stood in the corridors with Ron and our friends, Jacqueline and Michael, talking over favorite parts of the show.
“I really liked the wood nymph,” I told Jacqueline. “We should take turns doing that for each other.”
She agreed. But then we both wondered, what would we applaud? Jacqueline and I did our writing work practically immobilized in front of the computer. Michael was a legal aid attorney and Ron had an antique shop. The last time any of us had even somersaulted was eons ago, in our firefly laden summertime back yards. Yes, we juggled, but it was the usual middle class shticks, wildly tossing around work, family, exercise, community, friends and more. All the more reason, I thought, to find an appreciator who understood when we performed at our personal peak.
As we discussed the amazing acrobatic skills we had just seen, I imagined going over to Jacqueline’s. There she sits at her dining room table, her computer screen bright, her fingers nimble. She is a great writer and she is working her craft. I stand nearby, face the imaginary audience seated in her living room, and hold out my arms, gesturing proudly towards Jacqueline. She smiles shyly and I hold my appreciative pose. Then Michael walks through on his way to the kitchen.
“Hi Deborah, what are you up to?” he says.
I nod towards Jacqueline, who is writing briskly, and unfurl my arms towards her.
“Oh, yes, I see,” Michael says. He applauds. Jacqueline sits up straighter and allows herself a little bow. A lot of people don’t understand what hard work writing is and I am here to make sure her audience appreciates the subtlety and strength of this art form. Suddenly, Jacqueline stops. I imagine a drum roll as she presses her lips together, furrows her brow and stares into space. She is trying to think of the right word. We all know how hard that is–it’s the equivalent of the back flip followed by the double mid-air somersault. She shakes her head in despair. The audience is on the edges of its seats, mouths agape, hearts racing. Will Jacqueline find the word? Or will she crash to the ground, her sentence in shambles, her paragraphs paralyzed?
Finally, Jacqueline grins and returns to the keyboard, her fingers dancing. I point to her—“TaDa”– and her audience erupts into applause.
Meanwhile, while I daydreamed, the Cirque de Soleil arena was emptying. We walked to our cars and the image of the wood nymph stayed with me all the way home.
As Ron and I walked toward our house, I remembered a conversation we’d had several weeks ago. “Why don’t you ever mention how great the yard looks?” he’d said. “I’ve worked hard on creating this.”
I had started to defend myself. Then I realized he was right. I liked the yard but its lushness was part of my normal world, the world I rushed blindly past. I hadn’t taken time to appreciate all the effort Ron had put into creating it.
Now I stopped on the sidewalk. The porch light illuminated the plants and ivy as I swept my arms toward the yard, then back to Ron.
“Ta da!” I said, pointing to his lawn, then applauding him. He stared at me, and then smiled.
“Thank you,” he said. “Thank you for noticing.” He took a bow.
I followed him as he left the stage and went into the house.
Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.
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Inside Advocacy with Karen Love: Making a Difference for Those Living with Alzheimer’s
Alzheimer’s is a democratic disease and no one is immune. Movie stars, politicians, bankers, comedians, business moguls, professors, and homemakers– any one of us could face living with dementia. Karen Love is a founder of the Dementia Action Alliance, which focuses on improving dementia care for the more than five million Americans currently living with the condition. Karen works with governmental agencies to define and improve a person-centered standard of care for elders and for those living with dementia. She’s an inspiring leader and I wanted to share some of her insights with you.
Q and A
Q: What prompted you to form a non-profit and become an advocate for aging and for those living with dementia?
A: Advocacy must be in my DNA. Even as a girl, I was always sticking up for people and their rights. I initially worked as an administrator in assisted living and I became concerned about how fast the industry was growing without paying attention to the needs of its vulnerable residents, particularly those who had dementia. In 1996, I founded a non-profit organization, Consumer Consortium for Assisted Living (CCAL), to advocate for, support and educate consumers about assisted living. After a decade, we renamed the organization CCAL—Advancing Person-Centered Living, and we expanded our mission to encompass all elder care settings. We focused on promoting quality of life and person-centered practices.
Q: You’ve worked with Medicaid and Medicare to help define and implement a mind-set of person-centered care. What does person-centered care mean and why is it so important?
A: The World Health Organization and the Institute on Medicine recognize Person-Centered practices as the gold standard. Person-centered practices support people’s emotional, social, physical, and spiritual well being. They focus on treating people with dignity, fostering choice, independence, and feelings of purpose, value, and self-worth. These practices also help people maintain normalcy in their daily life. I’ve had the honor to help shape the person-centered framework for CMS’s home and community-based division, which support such state-based services as home care, adult day, and assisted living for individuals Medicaid eligible.
Q: You’ve now gathered thought leaders in the fields of aging and dementia, building a coalition of people dedicated to “making dementia better” in our country. What are some of your goals?
A: Our goals include:
- Enhance knowledge about dementia and person-centered care practices so people living with dementia are no longer stigmatized.
- Improve healthcare practitioners’ understanding and knowledge about dementia care, person-centered practices and treatment, and make sure materials are accessible.
- Share information with care partners and healthcare providers about the value of attending to emotional, social, and spiritual well being.
- Increase federal and state funding for dementia-care related support.
Q: What are some inspiring actions that ordinary caregivers or persons living with dementia have taken?
A: Just a couple of examples include:
- Michael Ellenbogen is a person who is living with dementia. Prior to being diagnosed, he was a high-level bank executive. He has become a tireless advocate and spokesperson for dementia.
- Lori La Bey started an online weekly radio program called “Alzheimer’s Speaks” to provide a venue for people to learn about dementia, share their experiences, and be supportive.
Q: What are three easy things each person can do to act as an advocate for those living with dementia?
A: Here are some suggestions:
- There are three ways things change nationally: (1) the President makes it happen (2) Congress makes it happen (3) the groundswell of people’s voices and actions make it happen. There has not been an interest for the first two methods. Historically, method 3 was effective for impacting and changing issues such as HIV/AIDS and breast cancer. The Dementia Action Alliance brings people together so we can be a catalyst for change.
- Words matter. Often people living with dementia, including Alzheimer’s, are called “patient,” “victim,” “demented,” and “sufferer” – and the condition is called a “dementing illness” and an “affliction.” This type of language can impact how people living with dementia feel about themselves and how they are treated by others. Print out “Use Words Wisely” from the website – www.daanow.org/words-matter/- and help educate others about what words to use.
- Email the Dementia Action Alliance at info@daanow.org about your interest in volunteering. Consider making a financial donation at www.daanow.org The more people involved in the Dementia Action Alliance, the sooner and greater the impact.
Please feel free to share this information with your friends and colleagues. The more we all work together, the more effective our voices will be.
Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.