Communication

7 Tips for Reducing Caregiver Isolation

Some years ago, when my mom was diagnosed with dementia, I didn’t know anyone else who was going through this journey. I felt very alone, even though I had a beautiful network of friends. I turned to writing to help me make sense of the situation. Eventually, I gathered the courage to share my personal essays with others, often through simply reading my stories aloud to friends and family. Being able to share my thoughts and feelings on this deeply meaningful dementia experience was so therapeutic, and it inspired me to reach out to other caregivers. Through my years as a family caregiver and through interviewing dozens of caregivers and experts in the field of dementia, I gleaned these 7 tips for reducing caregiver isolation.

Listening

When my friend Karen asked me to tell her more about my mom’s life, I was thrilled. I had been so immersed in my caregiving responsibilities, I had forgotten Mom’s fascinating adventures as a nurse in WWII, her worldwide travels, and more. Simply asking questions about the person who is living with dementia and listening avidly to the stories is a gift to the caregiver.

Visiting

“Your mother is so interesting,” my friend Jane said. Jane had offered to simply come to my house and have a short visit with me and Mom.  My mother was going through a period of repetition and I had heard her tale of the natural hot springs in Iceland at least 113 times. But watching Jane lean forward, ask cogent questions, and smile at Mom allowed me to appreciate Mom’s stories in a new way. These were cornerstones in my mother’s life and Jane’s interest reminded me what treasures they were.

Enriching

Mom had been a vibrant movie-goer, an avid opera lover, and an ardent museum enthusiast. But when she could no longer go out, I loved it when people offered to bring arts, culture, and the occasional dog, to us. Studies show that even indirect contact with animals reduces stress. Visits from small dogs and cuddly babies boosted both our spirits and helped us feel connected with our community.

Bringing over an art book and gazing at favorite painters together invited out the creative spirit and were a catalyst for open-ended conversation. Singing and playing music with others stirred up positive memories and filled us with happiness and well-being.

Exercising

So often, caregivers forget the power of fresh air and exercise. They forget the joy of sunshine and trees.  When they don’t have the steam to set out on their own, offering to take them on a stroll, a run, to a yoga class, or just to sit on a bench in a park, can offer moments of connection and renewal.

Noticing 

“What can I do for you?” my life-partner often asked. Frequently, I was so overwhelmed I had no answer. So he asked me concrete questions. “Do you need any errands run?” “Would you like me to make dinner?” “Are there phone calls I can help you make? Grocery shopping I can do?” Offering to do simple tasks helped me understand I did not have to soldier through this alone. Help was all around me and one of my spiritual journeys was learning how to receive it.


Inviting

It’s not always easy to stay connected with friends who are living with dementia and their caregivers, but it is so worth it. Even when my mother felt lost at social gatherings, she still enjoyed the energy of being around empathetic friends. Even when she didn’t understand every speck of conversation, she relished being around others and meeting new people. So did my father and so did I. Having friends reach out with invitations reminded us we were still part of our community.

Asking

Sometimes we don’t know what to say to our friends who are caregivers for those living with dementia. We don’t know what to do. Then it’s time to simply state the truth and tell them, “I want to be there for you, to understand what you’re going through. I want to support you, and I don’t quite know how to do it. Can you guide me?”
Chances are the answer will be a warm hug and a resounding, “Yes.”

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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Inside Dementia: Finding Gifts in the Journey

“My husband and I have been married for 53 years,” a woman with delicately curled silver hair and mournful eyes told the group.  “But in the two years since he was diagnosed with dementia, our relationship has changed.” She dabs at her eyes with a tissue and takes a breath. “It has grown even stronger. We are closer than we’ve ever been.”

Ron and I were in a conference room of caregivers in Ft. Wayne, Indiana, presenting for the Greater Indiana Chapter of the Alzheimer’s Association. We had just shared my story, Love in the Land of Dementia, and we were all talking about the gifts we have found in the dementia journey.

Another woman, whose husband was newly diagnosed, talked about her frustration and impatience before the diagnoses.

“Now that I understand what is going on, I have vowed to be more patient. I don’t want to waste a minute of our time together.”

“My husband doesn’t know who I am right now,” another woman said. “But the other day, he gave me such a compliment. He told me, ‘I want to marry you.’”

She told us how she rummaged in her cedar chest and showed her husband their marriage certificate. He read it with interest. Then he looked at her, eyes shining, and repeated, “I want to marry you.” Those words, so filled with love, lifted her spirits immeasurably. “To think that even now, when he doesn’t remember much of our lives together, he still loves me so much, that means a lot to me.”

She smiled, as we all applauded this amazing love.

We heard more stories of amazing love at our earlier presentation in Merrillville, Indiana. When we talked about the gifts and blessings we had each discovered in the dementia journey, one woman told us, “I find it an honor to take care of my mother. She has done so much for me and I am lucky to get to care for her right now. I am glad to be able to show my unconditional love for her.”

People shared many blessings—patience, the increased ability to live in the present, gratitude, flexibility, humor—but a deepening of love was the overarching message. We felt it during our own caregiving journeys, and we felt it deeply in the presence of those caregivers.

 

“The best and most beautiful things in this world cannot be seen or even heard, but must be felt with the heart.”      Helen Keller 

To learn more about the work the Greater Indiana Chapter of the Alzheimer’s Association is doing, please visit : https://www.alz.org/indiana/

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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Everyday Heroes and Nine Great Things We Learned This Weekend

This weekend we were lucky to be around a lot of heroes—the staff and grantees of The Brookdale Foundation Group, which supports national Relatives as Parents Programs, along with Group Respite programs.  We loved the sense of commitment and community we felt at this event and we also enjoyed learning from other speakers and the attendees. Here are the nine great things we learned from this weekend’s conference.

I.

Explain

Kent Karosen, President and CEO of the Fisher Center for Alzheimer’s Research, spoke about his new children’s book, Why Can’t Grandma Remember My Name?  Written about the way the brain is impacted by dementia and the affects it has on children, the book is illustrated in brilliantly colorful art, created by children, juxtaposed with art by people who are living with dementia. To learn more, www.alzinfo.org

 

 

 

II.

Reframe

Frances Kakugawa, author of I Am Somebody, spoke of the powerful role poetry played in her caregiving role throughout her mom’s dementia journey. While scrubbing the floor after her mother’s bathroom accident, Frances thought, “There must be another poem here.”  She decided to consider herself a poet-caregiver, rather than a struggling-caregiver. Reframing her image and her language helped her transform her attitude. You’ll enjoy visiting www.franceskakugawa.wordpress.com  and learning more about Frances, her writing, and her many books.

 

 

III.

Play

Who knew you could have so much fun with poetry! Gary Glazner, for one, founder of the  Alzheimer’s Poetry Project, who lead the whole group in a rousing call and response version of several popular poems. Gary added in music, movements, and stoked up our enthusiasm and our energy. We also created a poem together. You’ll enjoy using his ideas to deepen your communications and your connections. Visit www.alzpoetry.com and treat yourself to his book, Dementia Arts: Celebrating Creativity in Elder Care.

 

 

IV.

Support

We were shocked and saddened to learn there are more than one million caregiving youth in our country, struggling to stay in school and keep afloat while taking care of ailing family members. Connie Siskowski’s organization, American Association of Caregiving Youth, provides support for these gallant middle schoolers and teens. To learn more about her program, visit www.aacy.org

 

 

 

 

V.

Care

How many of us take enough time to truly care for and nurture ourselves. Jane Barton, speaker, write, and listener, spoke eloquently of compassion fatigue, born of too much caring for others and not enough focus on self. We laughed, cried, and reminded ourselves of the importance of self-care. Learn more from her at www.cardinalife.com and see her book, Caregiving for the GENIUS: Understand the Journey from the Inside Out.

 

 

 

There were more amazing speakers, but we didn’t get to hear them because we were speaking all day Saturday, sharing two information-packed sessions of Connecting in the Land of Dementia and one session of  our beloved The Hero Project. But just because we were teaching doesn’t mean we weren’t learning. Here are just a few of the tips we gathered from our participants.

 

VI.

Give

As a way of adding meaning and purpose to life,  one memory care day group created dog biscuits to donate to their local animal shelter. They stirred up a healthy mixture of organic ingredients, used cookie cutters, and delighted a lot of lonely pooches.

VII.

Collage

Another day care center helped a non-verbal resident create her own collage. One caring person watched carefully as this elder looked through a magazine, pausing at pictures of interest. Then the caregiver tore the photos that had intrigued the woman. Together, they glued them into a collage that the woman enjoys looking at often.

VIII.

Sing

“Song titles inspire singing and conversation,” one participant told us. She shouts out familiar titles and someone in her memory care group usually sings the next couple of verses, with others joining in. This often sparks a conversation about the song.

IX.

Share

The sense of community and generosity during the weekend reminded us again of why we love doing this work and of the importance of sharing things that work, things that don’t, and asking about things we wish we knew. Often, someone else has an answer for us, usually one of those quiet, but powerful, everyday heroes.

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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Finding Meaningful Memory Care

“I feel like I’ve been on extended vacation,” Ron’s father Frank said, after his first day in a memory care facility. “Today was really enjoyable.” Ron and I just melted with happiness. We had visited many facilities, with the hope of finding meaningful memory care with great activities. Frank couldn’t have said anything nicer.

It’s quite an emotional journey, finding meaningful memory care. So many of you have asked me for tips. I am re-posting the great ideas from my friend, Dr. El, Dr. Eleanor Feldman Barbera, PhD, author of The Savvy Resident’s Guide and a columnist for McKnight’s Long Term Care News.

Finding Meaningful Memory Care With Engaging Activities

“Remember, everything is an activity,” says Dr. El. She encourages care partners to seek a community with a dedicated memory care program, so people with cognitive impairments can benefit from all the offered activities.

“In a specialized unit, staff are trained to work with people who are living with dementia,” Dr. El says. “This training can help people enjoy greater independence.”

In one facility, a lady liked to wander into people’s rooms and take their jewelry. Rather than getting upset, the staff understood, framed this as “shopping,” and simply returned the jewelry.

“These kinds of insights create a calmer, slower-paced environment that reduces agitation,” says Dr. El.

Seek Structure, Soothing and Variety

Here are some things to look for, as you visit facilities:

Is there a home-like atmosphere?

Is there a structure to the day?

Are there calming activities scheduled for change of shift? Changing shift is disruptive, so some communities orchestrate a teatime with music or other soothing activities.

You’re also making sure there are a variety of activities throughout the day. These should include:

Outdoor Time: Taking people outside makes a big difference in mood, appetite, and the sense of connection to the world.

Movement: Exercise is an important component to health.

Nurturing: Look for activities that make people feel confident and good about themselves, such as spa days or activities that incorporate skills such as cooking, art, or gardening, modified to provide a “success” experience.

Engagement: Being engaged, rather than just entertained, inspires a sense of purpose, creativity, and social connection.

Kindness is Everything

“Meet with the recreational therapist,” Dr. El suggests. “Is she compassionate and caring? Are the staff members kind? You can have all the activities in the world but if they’re not done with gentleness and humanity, they won’t work.”

Let the recreation director know what your loved one likes to do and see if she can adapt the activity.

Stay Involved

Visit as often as you can and attend activities together. Encourage friends and relatives to join you. Meet other residents and get to know the families and staff.

“You can act as a connector to create friendships, so residents engage in their own interaction, even when you aren’t there,” Dr. El says.

For more information, visit Dr. Eleanor Feldman Barbera, PhD, http://www.eldercarewithdrel.com,

Treat yourself to Dr. El’s book, The Savvy Resident’s Guide

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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“Stamp” out Alzheimer’s

Do your part to “Stamp our Alzheimer’s.” For twelve years Lynda Everman was a silent caregiver. Her husband, Richard, was diagnosed with Mild Cognitive Impairment in 1997; in an effort to preserve his dignity, she told few people what they were going through.“We were both introverts and private people,” Lynda says. “My husband and I were a team, taking care of each other, moving through a situation that was too painful to address in public.”
After she had to move her beloved husband into assisted living in 2009, she went on her first advocacy trip to her state capital, Nashville, where she began telling their story. She continues to be an ardent voice for all families impacted by Alzheimer’s and other dementias. Along with activist Kathy Siggins, Lynda campaigns for a semipostal stamp that could raise money for Alzheimer’s Disease research.
The proposed stamp is similar to the Breast Cancer semipostal: consumers pay a little extra for the stamp and the additional funds go to the NIH for medical research. As of May 2017, the US Postal Service has raised over $84.4 million dollars for breast cancer through sales of that stamp. Lynda and Kathy want the same opportunity for Alzheimer’s research.
 Lynda is determined to change the trajectory of Alzheimer’s disease through public policy, increased funding for biomedical research, and recruitment of volunteers for clinical trials. The Alzheimer’s Disease Research Semipostal Stamp is central to Lynda’s campaign for its potential to advance research and public awareness of Alzheimer’s. She has written to every member of Congress urging them to cosponsor the Semipostal and she and Kathy have made countless visits to members.

Here’s where you come in.

H.R. 2973: To provide for the issuance of an Alzheimer’s Disease Research Semipostal Stamp was introduced earlier this year by Reps. Maxine Waters and Chris Smith, Co-chairs of the Bipartisan Congressional Task Force on Alzheimer’s Disease and currently has 76 cosponsors. Lynda and Kathy hope to recruit at least 100 cosponsors so they may request a public Congressional hearing on the merits of the proposed legislation.The stamp  is bipartisan and noncontroversial; it requires no governmental funding or increase in taxes.
You can help RIGHT NOW by calling your congresspersons and asking them to cosponsor H.R. 2973.
“It is important to share your story and speak out for those who cannot,” Lynda says. “ Please help them and their caregivers—and help us make this fundraising stamp a reality.”
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To call the U.S. Capitol Switchboard, dial 202-224-3121 and ask to be put through to the office of your Representative in the House.
If you don’t know the name of your Representative, you can get that information, as well as the direct line to his/her office, by visiting: http://www.contactingthecongress.org.
For more about Lynda’s work, please visit:
In addition to founding ClergyAgainstAlzheimer’s, Lynda served as a editor for “Seasons of Caring: Meditations for Alzheimer’s and Dementia Caregivers” and their recently released Leaders Guide for support groups. http://www.usagainstalzheimers.org/networks/clergy/seasons-caring She has a blog post on UsA2: http://www.usagainstalzheimers.org/blog/its-time-alzheimers-stamp
 Lynda is a tireless advocate on many fronts. On her advocacy site, Help Stamp OUT Alzheimer’s, she shares research and legislative updates, caregiving tips, the work of fellow advocates, and words of encouragement. She is a founding member of three national networks, all under the umbrella of USAgainstAlzheimer’s: ActivistsAgainstAlzheimer’s, ClergyAgainstAlzheimer’s, and WomenAgainstAlzheimer’s; and was instrumental in launching the Faith United Against Alzheimer’s Coalition (FUAAC), a cooperative effort to mobilize all elements of the faith community in the fight against Alzheimer’s disease and related dementias.
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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A Better Visit in the Land of Dementia

I’m always amazed at how a change of perspective can widen your heart and open your eyes. This is a story of how my friend helped me look at my mom in a new way and gave me me a better visit in the land of dementia.

Many weekday afternoons I stole away from my workday for a little rendezvous. I drove far into the southern part of the city.

There I hurried through the lobby, walked swiftly down the corridors and until I reached the locked door. There I punched in a secret code that allowed me into the inner sanctum, the memory care unit where my mother lived.

Walking into my mother’s room was always a surprise: I never knew who would greet me; a sweet curly-haired woman wearing a pink sweat suit and looking quietly compose? An anxious haggard woman who bent to pick up invisible lint on the floor and jabbered with invisible creatures lurking in the corners? Or an exhausted former beauty, lying across the single bed wearing an orange pullover and an adult diaper? My task was to appreciate every aspect of my complicated mother and whoever she was at the moment.

When my friend Maril asked, “Can I go with you to visit your mother?” I felt like a flutter of angels had gathered around me.

“Really?” I asked. “You want to see Mom with me?”

She did. I prepared her for our visit, describing Mom’s various moods. Maril did not seem shocked, worried or afraid. I told her about walking into the sometimes chaotic energy of the locked Alzheimer’s unit. She simply nodded as if this were an ordinary occurrence, which, for me, it was.

The day of our visit I felt lightness inside; I was eager to share my secret world with my friend.

Throughout the years, Mom has always been gracious with my friends and that day was no exception. Mom was sitting at a table in the dining room with a magazine in front of her. She looked pretty and serene and she smiled when we came in. We sat next to her and Maril took her hands.

“How are you Fran?” Maril said, looking into my mother’s eyes.

“Well I you know the scatter of it all,” my mother answered.

“I do know the scatter of it all. How are you getting along here?”

“Like a diamond in the sky,” my mother said.

As I listened to my mother and my friend talk, I was  so moved.

“Your mother is really something,” Maril said as we left the home. “I enjoyed seeing her. I’d like to go again with you sometime.” I was proud of my mother’s poetic and eccentric answers, proud of the way she engaged in the conversation. And I was grateful that my friend was able to appreciate my mother, listen to her words and intuit their deeper  meaning.

The visit was a huge gift for me. Seeing Maril engage with and appreciate my mom just as she was reminded me of the depths of my mother’s many talents and facets. This knowledge later helped me get through those moments when my mother seemed faraway or lost. My friend reminded me that there are so many ways to carry on a good conversation. All you need is attention, intention and love.

 

 

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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