Posts Tagged ‘Alzheimer’s Caregiving’

Dementia in the Land of Vietnam

“We are here to see Dr. Nguyen Thanh Binh, head of the Department of Neuroloy and Alzheimer Diseaese,” I tell the guard at the National Geriatric Hospital of Vietnam in Hanoi, showing him my folded paper with her name printed on it.

He grins, then points to a full size sheet of paper in the security booth’s window with our names printed on it. We follow him into the hospital and up a flight of stairs. After a short wait, Dr. Binh warmly welcomes us into her office. She has a table ready with chairs and tells us she has invited others from her department to talk to us as well. Another Dr. Nguyen Thanh Binh arrives. Her Phd thesis was on easing the burden for family caregivers.  Dr.  Ngan Thi Hong Anh, doctor of rehabilitation, joins us. She seeks non-medical solutions for improving quality of life.  Nguyen Ngoc Anh, RN, completes our group. She works daily, communicating with and caring for  people who are living with dementia.

For two years. Dr. Binh and her team have been running a pilot study, inviting people who are living with dementia to attend a three day a week program that focuses on engaging socially, physically, emotionally, and intellectually.  They use music therapy techniques, they bake traditional cakes together, and they enjoy various arts and crafts projects. All these therapies offer physical and occupational therapies, as well as vital social interactions. The project has been a huge success, with both family caregivers and people living with dementia enjoying the results. Besides giving the caregivers a much needed respite, families report improved quality of life and and increased abilities in the activities of daily living.

“Symptoms improve,” Dr. Binh reports. “Patients want to keep attending and families have their burdens eased.”

Dr. Binh and her team have extended the program.

Often people come to the hospital, seeking answers to issues related to memory loss.  Many elders live at home with extended families, and their children and grandchildren are frequently confounded by their cognitive impairments and other symptoms of dementia. Dr. Binh and her associates offer education, information, and comfort. They describe the disease and try to help families move beyond their initial feelings of hopelessness. They encourage families to accept and embrace their elder and support him or her in living a meaningful life.

We left our meeting with these remarkable women feeling inspired. They are doing important work and making a difference for the people of Hanoi and Vietnam.

Deborah Shouse is the author of Connecting in the Land of Dementia: Creative Activities to Explore Together and Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.

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My Mom’s New Holiday Tradition: Smiling

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We roll into the memory care facility’s dining room just as the show is ready to start. The singer, Thelda, kicks off her shoes and presses play on the boom box. Above the cheerful sound track, she sings Jingle Bells. She dances across the room with the remnants of ballroom steps. She stops in front of Mom and sings right to her. She gets on her knees, so she can look into Mom’s eyes, and keeps singing. Mom notices her and smiles a little.

Thelda moves on, singing to each of the patients gathered around, so intent on making a connection that she often forgets the words.

“Is it all right for your Mom to come to Christmas holiday events?” the activity director had asked me, when Mom moved in.

“Yes, I’d like her to go to any activities. She likes the extra energy.”

I think Mom would approve of my decision, even though she has never celebrated Christmas. Growing up, her immigrant mother held on to the Jewish spirit of her home, kneading dough for Friday evening challah, observing each holiday and prayer period in her own way. Some orthodox women followed the religious law that commanded a small piece of the dough be burned as an offering to God. My grandmother was poor; she did not believe in burning good food, regardless of tradition. So she sacrificed a portion of the dough to her youngest daughter, my mother Fran. She created a “bread tail,” leftover dough that she baked, then smeared with butter and sprinkled with sugar . When Mom used to talk about her mother, she always mentioned this special treat.

Even when I was growing up, and we were the only Jewish family in our neighborhood, my mother still did not sing Christmas song. She let the holiday rush by her, like a large train, whooshing past and leaving her behind.

Now, I am singing Christmas carols to my Mom for the first time and she is smiling. She has moved beyond the place where the religions are different, beyond the place where she wants to separate the dough and make a sacrifice for tradition. Her new tradition is anyone who can make her smile.

With each song, from White Christmas, to Silver Bells, to Frosty the Snowman, Thelda moves back to Mom, tapping her, acting sillier and sillier. Each time, Mom lifts her head and widens her mouth for a second.

For her finale, Thelda puts on a big red nose and sings Rudolph. When she dances in front of Mom with that scarlet nose, Mom laughs, her face a miracle in pure enjoyment. I laugh too, so delighted to see Mom engaged and absorbed.

Two weeks from now, I will bring a menorah and candles into my mother’s room. My father and I will have a short Chanukah ceremony with Mom. She will pick at the shiny paper covering the Chanukah gelt (chocolate candy disguised as money). She will slump over in her chair. But she will come back to life when she sees me, her only daughter, wearing a big red nose as I light the menorah.Here’s to a meaningful and fun holiday season.

I look forward to connecting with you when I resume blogging in early January.

Deborah Shouse is the author of Connecting in the Land of Dementia: Creative Activities to Explore Together and Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.

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Six Secrets of Dementia Inclusive Holiday Cooking

 “Who prepared this delicious meal?” a friend asked during a holiday dinner.

I named my brother Dan, our head chef, first. Then I included the support team—myself, my mom, my daughters and nephews.

“Did I help?” Mom whispered as I passed her the mashed potatoes.

“You sure did,” I told her. ”You mashed the potatoes, put the marshmallows on the sweet potato casserole, and mixed the fruit salad.”

“That’s good,” she said. “I like to help.”

Our desire to help and contribute to seasonal celebrations doesn’t end with a diagnosis of dementia. It’s lovely to linger in the kitchen together, preparing food for the holidays. It’s even lovelier when you can adapt and enjoy dementia inclusive holiday cooking so that people of varying abilities can participate.

Rebecca Katz, author of The Healthy Mind Cookbook, sees food as a great equalizer, something anyone can enjoy regardless of abilities. Fixing a delicacy for someone offers a tangible and delicious way to give back.

Here are six secrets of iementia Inclusive holiday cooking.

  • Leaf through a favorite family cookbook or recipe box and use the pictures and recipes as a catalyst for conversation. Ask open-ended questions, such as, ”What does that brownie recipe make you think of?” “What do you like about the holiday season?”
  • Chose a time of day when you’re both rested.
  • Create a comfortable kitchen environment, by playing familiar seasonal songs you can both hum or sing along to. Reduce extraneous noise and distractions, such as a television in the background.
  • If you wish, take photos during the experience. That way, you can relive the adventure and share with family and friends.
  • Indulge in instant gratification, if possible, by sampling your work when the cooking is complete.
  • Even if the person living with dementia can’t help prepare food, he can still enjoy sitting in on the action and the conversation.

Whether you’re stirring a pot of orzo or dropping mint leaves into cool water, enjoy your time of creation and connection in the kitchen.

A longer version of this piece originally appeared on Joan Lunden’s excellent website:      Enjoy Dementia Inclusive Holiday Cooking.  Thanks to Sue Fitzsimmons, MS, ARNP, Judith Fertig, author of The Memory of Lemon, Kate Pierce, LMSW, Alzheimer’s Association Greater Michigan Chapter, and Rebecca Katz, author of The Healthy Mind Cookbook

Deborah Shouse is the author of Connecting in the Land of Dementia: Creative Activities to Explore Together and Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.

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Insider Dementia Friendly Travel Tips, from Laurie Scherrer

This year, Laurie Scherrer is taking a number of trips: Atlanta, to speak at a conference, South Carolina, for a family reunion, and the Caribbean, as a speaker and participant in a dementia-friendly cruise. Since she is living with early onset dementia, Laurie plans out her trips, taking into consideration her needs and the chaos that can be a natural part of any journey. Here are some insider dementia friendly travel tips from Laurie.

 

Planning for a Smooth Flight

Laurie contacts TSA and her airline, notifying them of her disability, so they can mark it on her ticket. She and her husband both paid for a TSA pass, so they can go in together. That helps her avoid the bombarding noise, distraction, and exhausting wait inherent in a long check-in line

“The TSA staff will walk you through the line,” she says.

Laurie is sensitive to noises, so the constant airport announcements, the din of hundreds of conversations, and the drone of background sounds present challenges.

“I walk into a restaurant and I hear the clanging of the dishes, the forks on the plates, the waiter’s shoes thudding against the floor,” she says. “I have lost my ability to filter sound, and those noises are as strong as any conversation I’m having.”

To minimize distraction and confusion and to help her concentrate, Laurie often wears noise-cancelling headsets.

Once in the airport, she tries to find a quiet place to sit.

“I don’t sit at the gate for two hours with a slew of people,” she says. “Sometimes a restaurant or bar is quiet. For overseas trips, you can try to get access to an airport lounge.”

She tries to get a seat towards the front of the plane, to avoid additional waiting and wading through a crush of passengers.

 

Packing it Up

Two weeks before a trip, Laurie organizes her clothes for each day. She puts on an outfit, then takes a picture of it.

“On the picture I write, ‘Purple shirt, black slacks, white sneakers, white socks, etc.,’” she says. “Then when I pack, I put each day’s entire outfit together, including socks and underwear. That makes getting dressed so much easier.”

 

Getting Oriented

At any new hotel, Laurie and her husband walk around the entire building so Laurie can get oriented. When she is traveling alone, she talks to the hotel manager, to explain her situation. At one lodge, the receptionist escorted Laurie to her room and helped her unpack. Laurie carries a tag with her name and room number on it, in case of sudden confusion.

“Don’t be afraid to ask for help,” she says.

 

Taking Breaks

Laurie has already planned her quiet time and her personal getaways for the upcoming cruise, where she is both a traveler and a speaker/educator.

“On cruise ships, the library is often a quiet haven,” she says.

She also avoids group shore excursions, as it is hard for her to enjoy being in a crowd.

But it’s not hard for Laurie to relish travel and to revel in engaging in new experiences and meeting new people. It just takes a little planning and a lot of taking care of herself.   #

To learn more about Laurie, visit https://dementiadaze.com/about-me/

Deborah Shouse is the author of Connecting in the Land of Dementia: Creative Activities to Explore Together and Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.

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Widening the World Through Travel

As the waiter served dessert, Lori La Bey looked around the table at her family and smiled. She couldn’t believe she had pulled this off — her children, her siblings and their children, and her parents all enjoying a Caribbean cruise together.  Her mother was living with Alzheimer’s and her father had brain cancer: they had assumed they wouldn’t get to travel again. They were beaming and Lori knew all her planning had been worth it. She was widening the world through travel.

She still treasures the family pictures from this trip. This meaningful travel experience inspired Lori, founder and host of  Alzheimer’s Speaks, to orchestrate a cruise for people who are living with dementia and their families.

“Travel is a normal part of life,” Lori says. “When you stop traveling, your world becomes smaller.”

From her years caring for her mom, Lori understands how easy it is to feel isolated and stuck. She also understands the joy of engaging in the world, trying new things, and meeting new people. Her trip enriched her family and she wants to offer others that gift of connection and adventure.

Lori also learned some tips from traveling with her parents. Here are a few ideas for creating a smooth traveling experience for yourself and for someone who is living with dementia:

Create a flexible travel experience. Lori chose cruising because it can be reasonably priced, you can unpack once and stay in the same room the entire trip, and there’s lots of flexibility with eating (including free room service), activities, and touring. Cruising is also ideal for the intergenerational experience, offering activities for all ages.

Make the person living with dementia part of planning the trip. Discuss the trip with all involved, asking for feedback and talking about what each person really wants to do. Incorporate those dreams into the trip.

Empower your travelers. Lori packed all her parents things into one giant suitcase. Her father had always been the one managing the luggage and he really wanted something to carry. “I hadn’t thought to pack a couple of small bags so he and my mom could feel like regular travelers,” Lori says. “People want something to be in charge of so they don’t feel left out.”

Work with a travel agent and make your life easier. Plan in advance for noise, long transfers, layovers, long car rides, and other chaos. If flying, call the airport if you need to arrange for wheelchairs or other inner airport transportation. To mute noises, bring earplugs. Carry along items that soothe and comfort each of us, including favorite music and head phones. If you’re cruising, talk to the cruise lines in advance, discussing special needs, including dietary, medical, and any mobility issues.

Take pictures and videos and document these precious moments. You’ll enjoy looking through these memories again and again together.

“Travel is about being together and widening your world,” Lori says.  “It’s a wonderful way to build those moments of magical and meaningful connection.”

For an amazing way to widen your world, consider Lori’s upcoming November Dementia Friendly Conference and Cruise. Lori and a team of educators, including a panel of inspiring people who are living with dementia, have planned a nurturing, connecting, educational, and inspiring Caribbean trip. For more information, visit, https://alzheimersspeaks.com/cruise-with-us

 

Deborah Shouse is the author of Connecting in the Land of Dementia: Creative Activities to Explore Together and Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.

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How to Create Better Connections in the Land of Dementia

Ron and I both love helping people create better connections in the land of dementia.  We are enjoying the second year of our meaningful Movies and Memories film series.  Our next free movie events (and I say “events’ because there is so much more than just sitting and watching a film) are September 10 and November 5.  Please tune into Kansas City Live on KSHB-TV on Thursday, September 7 during the 10:00 hour, for additional details. 

I was delighted to be featured on Mike Good’s Together in This recent podcast. Mike is a gifted interviewer, with an authentic voice and a true commitment to help people stay better connected. I so enjoyed our time together and wanted to share the interview with you.

Recently, we have been connecting through creating laughing classes for caregivers, elders, people who are living with dementia, and others. We love going around to care communities and laughing with community members, family, and staff. Our next public laughter presentation is at the Landon Center, on October 18 at noon. It’s free and open to the public. If you’re in the Kansas City area, please come laugh with us. It’s great fun!

A quick laughing exercise

I was honored to have a book excerpt featured on Maria Shriver’s website.  Maria does amazing work and her new book, Color Your Mind, is a visual and information treat, full of inspiring ideas.

I was thrilled when a story of mine was accepted by Chicken Soup’s The Dog Really Did That? The story honors Ron’s mom, Mollie, and her love for a dog named Biscuit. If you have a chance, read my story and so many other great essays in this inspiring book.

Finally, thanks to Mary Anne Clagett of Creative Forecasting, a publication for Activities Professionals. She is featuring a review of Connecting in the Land in their November issue. The publication brims with interesting ideas for creative and meaningful activities.

There are so many ways to Create Better Connections in the Land of Dementia, and as you can see, there is power in sharing stories, laughter, and the arts. 

Deborah Shouse is the author of Connecting in the Land of Dementia: Creative Activities to Explore Together and Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.

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Let’s Go to the Movies: A Dementia-Friendly Series

“Let’s go to the movies,” my dad often said to my mom. My parents would have loved our Movies and Memories series, now starting its second year.  We are excited to announce our partnership with the Kansas City Boys Choir and the Kansas City Girls Choir this season. Some of their outstanding performers will be joining us at each event.

Already, the series is making a difference in a variety of ways. Additional libraries in Missouri and other states are interested in implementing the program. And our library is so committed to becoming more dementia-friendly that it is having special training for its staff, courtesy of the Alzheimer’s Association — Heart of America Chapter. Please share this invitation with those who would enjoy it. And if you’re in the Kansas City area, please join us. It’s free and open to all. Let’s go to this movie series!

Deborah Shouse is the author of Connecting in the Land of Dementia: Creative Activities to Explore Together and Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.

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Enrich Life by Adapting Hobbies 

We all want to be engaged in purposeful and fun activities. When we enrich life by adapting hobbies, we help people living with dementia stay engaged in activities that are meaningful and interesting to them.

Discover What’s Most Important

To adapt hobbies, ask yourself: What is most important about the activity?

For example, for gardeners, is it the feel of their hands in the soil? Is it producing flowers or harvesting vegetables? Is it having something to take care of?

For those who like quilting, is it the finished product or making the squares? Is it the companionship with other quilters? Or the texture and colors of the fabric?

For those who like cooking, is it the measuring and stirring? Do they enjoy the aromas and textures of the ingredients? Is it the joy of preparing something that thrills others? Or is it the simple pleasure of tasting delicious foods?

With those answers, you can support the aspects of the activity that really resonate. You can enrich life by adapting hobbies.

Here is a story about adapting your attitude.

Embrace the New News

That Tuesday morning, she walked into the kitchen and saw her husband, relaxed in his chair, drinking his morning coffee, and reading the newspaper. He loved his morning ritual and everything was as it always had been. Except now he was holding the newspaper upside down. At first, she was upset, angry that dementia had robbed him of reading. As she battled with her feelings, he hummed, a sign he was happy and content. She took a breath and realized, she too should be happy and content.

Go for the Greens

I love this story from Mara Botoni, author of When Caring Takes Courage. Here’s how she kept her grandfather, who was living with dementia,  involved in his golf game. For a time, he walked the golf course and played with empathetic friends. When he could no longer play, he liked being driven around the course, enjoying the scent of freshly mown grass, the vistas of rolling green lawns, and the thwack of a well-hit ball. Later, at home, the family set up an indoor putting green and watched golf tournaments on television with him.

 

 

Deborah Shouse is the author of Connecting in the Land of Dementia: Creative Activities to Explore Together and Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.

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Dementia Journey: Planting Seeds and Growing Engagement

I met so many inspiring people when I was writing Connecting in the Land of Dementia. Activities director Lori Condict, from Chestnut Glen Assisted Living by Americare in St. Peters, Missouri, created an inspiring program focused on planting seeds and growing engagement. Whether you’re a family care partner or you work in a facility, you’ll learn from Lori’s project.

Planting Seeds and Growing Engagement

“Mable, I could use your assistance this morning,” Lori Condict says. “The tomatoes are ripe and I need help picking them. Are you available?”

Mable nods. Lori waits while Mable puts on her gardening hat and gloves. Then they join others from the memory care community outside in the garden.

“What are you thinking about Mable?” Lori asks, handing her a small bucket.

“My first bite of summer tomato.”

“Let’s try one of these,” Lori says.  She knows that Mable and her husband used to have a vast vegetable and flower plot.

Mable plucks a cherry tomato off the vine and pops it into her mouth. Slowly, she picks another and plops it in her bucket. Others in her community are also harvesting the tomatoes.

“We’ll be sharing our vegetables with the food bank, so others less fortunate will enjoy this fresh produce, “Lori reminds her.

“That’s good,” Mable says. “Everyone needs to taste these tomatoes.”

Mable lives in the memory care unit in Chestnut Glen Assisted Living by Americare in St. Peters, Missouri. She is one of the 15 residents working on the Operation Riverfront gardening project.  Lori, the activities director in the care facility, is a city girl. But she knew she’d have plenty of help from her residents. She also knew that they would thrive knowing they had a purpose and were giving back to their community.

Seeding Empowerment

Lori started simply, with a bunch of tomato, cucumber, squash, peppers, and pea seeds, pretty and colorful vegetables that would remind residents of their home gardens. Lori had tasks for all abilities: some held little containers while another filled them with dirt; some tamped in the seeds and others labeled them. Lori provided everyone with special hats and gloves.

While they worked, they reminisced, talking about favorite tomato dishes and summertime activities.

Sharing the Bounty

When it was time to share with the local food pantry, the residents did the harvesting and packing.

“We had planters, pickers, packers, counters, and a watering crew,” Lori says. “People who’d been depressed and disengaged got involved. Through working on the project, they felt alive and useful; they had a purpose.”

Want to grow plants, connections, and a sense of purpose? Here are some tips:

  • Select flowers, plants, vegetables, and herbs that are pretty, colorful, easy to grow, and have some meaning to the person living with dementia.
  • Create small tasks that are interesting and pleasurable.
  • To increase the sense of purpose, find ways to share blooms, cuttings, vegetables, and herbs with family, friends, and community members.
  • For those who can’t go outdoors, bring the plants to them in containers.
  • Infuse the work with opportunities for conversation.

Deborah Shouse is the author of Connecting in the Land of Dementia: Creative Activities to Explore Together and Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.

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The Marvels of Misplacing

As I was worrying over this issue, which seems to plague so many people I know, I came across this piece I wrote several years ago. It reminded me to “seek” the creativity and joy hidden in every situation.  
Is it possible to have ten pairs of reading glasses and lose them all in the same afternoon?

“I don’t know where my glasses are,” Mom tells me. I bite my lip; she’s been misplacing things all day. We are supposed to be spending a day drawing and painting, trying to connect mom with the artist she used to be. We are supposed to bake cookies together and look through magazines. But I’ve been spending much of the time crawling around, looking under the sofa and chairs and between the cushions for the disappearing glasses.

“Let’s make our cookies. You won’t need your glasses for that,” I say.

“I need my glasses.”

           As I search, I wonder when it became a drudgery instead of a joy to find things. One of my favorite childhood games was Hide ‘N Seek. I loved being the Seeker, loved the surprise of finding someone in a tucked away, mysterious place. I had a special trick I used when I was “It.” I would close my eyes and say, “If I were Dan, where would I hide?” Then an image floated into my mind and I’d race to the hiding place. Half the time, I was right.

Do I still have “it?” I close my eyes and think, “If I were Mom’s glasses, where would I be?” The refrigerator comes to my mind. I rush into the kitchen and fling open the refrigerator door, only to see the usual chaos. But I’m hungry, so I reach for an apple. Behind the fruit is a pair of reading glasses, sprawled across the shelf.

Triumphantly, I take the glasses to Mom.

“These feel nice,” she says.

Not only has my mother reminded me of the importance of creativity, curiosity and play, but she also discovered a great summer time tip: chill your glasses and cool off your face.

Deborah Shouse is the author of Connecting in the Land of Dementia: Creative Activities to Explore Together and Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.

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