Posts Tagged ‘care partners’

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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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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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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Redefining Dementia and Focusing on Wellbeing

Several months ago, I was delighted to write an article highlighting some of the American leaders in dementia care. I will be occasionally spotlighting luminaries from that article who are redefining dementia and focusing on wellbeing.

A version of this piece appeared in Signpost Journal: Journal of Dementia and Mental Health of Older People. This excellent journal from Wales, UK, offers a variety of informational and inspirational articles. I am honored to be a contributor.

Redefining Dementia and Focusing on Wellbeing

Late every afternoon, Roger paces the corridors, pausing at the locked door, fiddling with the keypad, sometimes even setting off the alarm before he resumes his pacing. Instead of labeling Roger’s behavior as “sun downing,” Allen Power, MD, teaches practitioners to ask themselves: Which vital element of health and happiness is missing from Roger’s life: identify, connectedness, security, autonomy, meaning, growth, and joy. By doing this, Dr. Power is redefining dementia and focusing on wellbeing.

Dr. Power is a geriatrician and educator on transformational models of care, with a focus on people living with changing cognitive abilities.  He is also the author of two groundbreaking books, Dementia Beyond Drugs and Dementia Beyond Disease: Enhancing Well-Being.

He defines dementia as, “A shift in the way people experience the world around them.”

“I believe that most of people’s on-going distress is due to the erosion of one or more aspects of well-being, from the care environment, and/or the person’s cognitive changes. Imagine these domains of wellbeing as seven glasses being emptied. Start filling the glasses and notice the results.”

water glass

As Dr. Power trains and consults with memory care communities around the world, he sees meaningful results from this compassionate approach. Suddenly, Mary is not constantly calling out night and day. Bill is not hitting the aides when they take him to the shower. Roger is not setting off the alarm or trying to open the exit door.

“There’s no sure answer,” Dr. Power says. “You need to understand the individual and experiment until you reach the root of the problem. People may be looking for connectedness. They may feel anxious and insecure. They may be bored.”

If someone is repeatedly trying to leave the building, Dr. Power might ask: Are they feeling insecure? Are they feeling lonely and trying to reach someone they love? Are they yearning to connect with an important part of their identity, such as a beloved garden, horse, dog, or pick up truck?

Working toward an Inclusive Future

Dr. Power uses a strength-based approach to work on enhancing wellbeing. He encourages developing “brain ramps,” cognitive supports that help people move through the day in meaningful ways.

“With this positive approach, I can now look at a challenging scenario and offer insights,” Dr. Power says.

Beyond the care of the individual, Dr. Power believes in examining ingrained rituals and routines of institutionalized care, including all meals at a certain hour, with an aim of moving to a more individualized and meaningful mode of care.

“We can make mundane activities such as bathing or getting ready for bed more meaningful and relational than we normally do in long-term care,” he suggests.

“We need to support people instead of dehumanizing them,” he says. “We need to be inclusive and try harder to understand them.”

Dr. Power believes integration into society is a basic civil right.

“Imagine if people who lived with cancer, arthritis, or diabetes could only live with others who shared their medical condition. There’s a problem with seeing the disease instead of the people,” he says.

Dr. Power is contributing to a future where all communities are dementia inclusive and where dementia is just viewed as another way that people see the world.

For more about Allen Power, MD, internationally known geriatrician, educator, and author , please visit:

Website:  http://www.alpower.net

Dr. Power is participating in Dementia Action Alliance’s  Reimagine Life with Dementia Conference, June 25-27.

http://daanow.org/wp-content/uploads/2016/10/DAA-Conference_042817.pdf 

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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Laughing During the Dementia Journey: A Map to Increased Health and Happiness

“I feel so much better after all this laughing,” our friend told us. “My brain fog has lifted. I feel myself again.” Our friend has been struggling with memory issues and a dimness in her thinking. We had a wonderful time practicing laughing exercises with her.  The more we laughed together, the easier and more spontaneous our laughter flowed. Laughing during the dementia journey left us all feeling healthier, happier, and more energized.

As I develop my own laughter practice, I wanted to know more from someone who’s really integrated laughing into her life. I asked Amy Kuth to share her insights.   Amy is a Health & Wellness Coach at Mayo Clinic’s Dan Abraham Healthy Living Center in Rochester, MN.  She has been practicing laughter for several years and has created an on-going Laughter Club for Mayo employees.  She recently completed a five-day teacher training course.  Here is my Q and A with Amy.

What benefits have you seen from your laughter yoga practice?

Laughter yoga helped me discover my playful side again after it had gotten buried under life pressures and self-criticism. Since I started leading laughter yoga and having a regular laughter practice I have become more confident, creative, and playful at home and in my workplace. Laughter brings me into the present moment, creates harmony in my mind/body/spirit, connects me to those that I am laughing with, and always puts me in a good mood!  I also set a daily intention to bring extra laughter into my specific work unit, outside of the laughter yoga sessions.  Doing this elevates our mood, encourages playfulness, increases creativity, and brings us closer together as a team.

How has your team, working in Employee Health at Mayo, benefitted from the extra laughter?   

In the weekly Mayo Clinic Laughter Club, we do a one word check-in at the end of our laughter yoga sessions. Words include: relaxed, energized, calm, happy, stress-free, , warm, peaceful, and grateful. These sessions are a great way for participants to take a break from work and other responsibilities, and to refresh and reset. The benefits of these sessions are then carried into the rest of their day.

What are some quick ways to add a splash of laughter into your day?

Plenty of haha’s a day keep the doctor away!

Here are a few ideas for adding a quick splash of laughter to your day:

  •           Surround yourself with positive people and things.
  •           Laugh in your car while you are driving to work.
  •           Affirm yourself with a smile and laughter while looking in the mirror.
  •           Smile at someone else and see what happens.
  •          Attend a laughter yoga club.
  •           Add humor to your day through media, fun activities, and social connections.
  •           Have a laughter buddy.
  •           Laugh into your cell phone, even if nobody is on the other line.
  •           Join a live laughter party on the phone.
  •           Set a timer for one-minute and just laugh until the time is up.

Why is adding laughter to our day important? 

In a typical day, laughter is usually sporadic and short lived. In order to gain the most benefit from laughter it needs to be long and deep, stimulating the diaphragm. Intentionally adding laughter to our day helps us receive these benefits. The benefits of laughter can be summarized simply by remembering the 5 H’s, which I learned in my teacher training.

Happy :  Laughter makes us happier by elevating our mood and attitude.  We do better in life with a improved mood and attitude.

Healthy:  Laughter improves our immune system and physical health. When we are healthier we can do more.

Harmony:  Laughter oxygenates and creates harmony in our body and brain.  What we do is more effective and efficient.

Heartfelt:  Laughter enriches our relationships and creates connection with others and with our self. Laughter is a universal language that breaks down barriers and causes judgment and self-criticism to fade.

Hopeful:  Laughter increases resilience. We bounce back better from adversity.

For more information about Laughter Yoga and about laughing during the dementia journey, please visit:  www.laughteryoga.org   or  http://robertrivest.com

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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Make Dreams Come True 

Make Dreams Come True 

Make Dreams Come TrueAll her life, my mother dreamed of visiting Japan.  She loved Japanese art, food, and culture. But she thought such a trip was too expensive and complicated. Even as Mom struggled with cognitive impairment, her yearning of Japan remained. Then my brother moved to Tokyo and prepared to make dreams come true. He arranged for business class travel for Mom and Dad. He squired my parents everywhere and even set up a meeting with a Japanese master potter. He documented it all with photographs so we could all share in the joy.

Recently Ron and I visited Edencrest at Green Meadows in Johnston, Iowa, to learn more about their memory care work. When Nick Lensch, Assistant Manager, and Susan Babcock, Life Enrichment Coordinator, told me about their Dare to Dream program, I wanted to learn more.

“This program brings happiness to the dreamers living with dementia, their families, the staff, and other members of the memory care community,” Susan told us.

As  Susan gets to know each resident, she usually uncovers an unfulfilled dream. She brainstorms on how she can carry out the dream, including who can help from the community.

“Bringing the community in on the dream is wonderful for all of us,” she says.

Once she has the dream planned, she talks to the family. Often the dream experience is one the family treasures. Here are two of the dreams they orchestrated :

Make Dreams Come TrueJoe had been a star baseball player in high school and a minor league player for a couple of years. He loved all things baseball.

“I wish my sons and grandson could have seen me play ball,” Joe often said.

Susan heard the wistfulness in his voice and created a plan. Partnering with the Iowa Cubs, she arranged for Joe to throw out the first ball during one of their games. Both his sons were there to witness their father, one son flying in from Japan for the event! Joe’s grandson stood by his side for the grand pitch, cheering him on. Then the entire family enjoyed watching the game together. #

Make Dreams Come TrueMarianne loved to sing and often reminisced about times she and her father sang together.

“I wish I would go on the road and sing,” she often said.

Nick and Susan had an even better idea. They contacted a local singing group and asked if Marianne could perform with them. They were delighted to be part of her dream. Marianne selected favorite tunes. Her face shone with joy as she and the group performed to an enthusiastic audience, including her grateful daughter.

“We believe in embracing the moment,” Nick says. “Making dreams come true creates a string of treasured connective moments.”

To make dreams come true, here are a few tips:

  • Listen to each person’s stories and notice favorite ones. Ask yourself, is there a wish or dream tucked into one of those tales?
  • Double check with another family member or friend, to see if you’re on the right track.
  • Brainstorm ideas to fulfill the dream. What do you need in terms of people, venues, witnesses? Who would enjoy helping?
  • Put together a small team and set the time and place. Have someone ready to photograph and video the celebration.

For more ideas on how to make dreams come true, visit:

Make Dreams Come True

Nick and Susan

seniorhousingmanagement.org

Don’t forget your own dreams!

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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Adapting Hobbies to Meet Changing Abilities

Years ago, I worked as an activity director at a county home in Butler, Mo. There I learned about adapting hobbies to meet changing abilities. Albert taught me that even when you can’t grip a domino, you can still enjoy the game. Every Wednesday, we dropped him off at the town square for his weekly session. A friend helped him place the pieces and he often won. Sadie taught me the power of memorizing poetry.  Though she could no longer see the world around her, she enriched her inner world by memorizing dozens of verses. Visiting her was like opening a book of best-loved poems. The residents all taught me the joy of sitting around a table together, working on a project. Even if the project didn’t work out the way we envisioned, the energy and camaraderie did.

Earlier this year, we had the opportunity to offer a presentation on engaging through creative activities for the National Association of Activity Professionals.  These professionals are so vital in helping people stay creative and connected throughout the dementia journey. We were inspired by their depth of knowledge, compassion, and eagerness to learn.

As part of our presentation, we discussed adapting hobbies to meet changing abilities. We shared ideas from Connecting in the Land of Dementia, and our participants offered ideas from their experiences.  Here are some tips for adapting hobbies:

Ask yourself: What does the person love most about doing this activity? What are the most important components for them?

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?  Or is it the ritual coffee and cookies enjoyed after the work is done?

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 scrapbookers, do they enjoy looking through photos or gluing pictures on the page? Do they like leafing through magazines and cutting out pertinent words and pictures or adding stickers and other playful accents. Or maybe it’s the companionship of working together.

By gathering answers to these types of questions, you can break down the activity’s components and encourage people living with dementia to keep pursuing their interests.

If you have ideas for adapting activities, we’d love to hear about them. For more information on the NAAP, visit https://naap.info/

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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Engaging during the Dementia Journey: One Story and Six Tips

My satchel was packed with potential connectors, not the electrical type, but the emotional, engaging type.  I had a sheaf of favorite poems, an Audubon bird book, a list of songs Mom and I liked, some bright red Mardi Gras beads, several colorful scarves, and some paper and markers. I was eager to see what Mom might fancy and I felt prepared for any creative impulse. But as usual, my mom surprised me.  When I walked into her room in the memory care community, she was sitting on the bed, fiddling around with a blanket. She smiled and held out her hands. I sat beside her, held her hands, and smiled at her.  She laughed. I laughed. She made a little funny face. I mirrored her. I followed her lead until she suddenly gripped my fingers and closed her eyes. I closed mine, but kept sneaking peeks at her.  She was asleep, a lazy smile on her face, so I closed my eyes and rested with her. This was one of many ways of engaging during the dementia journey.

Spontaneity and surrender were two of the many lessons my mom taught me during her dementia journey. I loved preparing for our time together, cobbling together ideas to engage us both. Sometimes we sat quietly, leafing through magazines. Other times, I sang Mom show tunes. Still other times, I simply went with the flow and enjoyed Mom’s energy and spontaneity.

My mom has since passed away but her spiritual and emotional gifts linger on. When I visit friends who are living with dementia, here are a few ideas for connecting.

  • Choose a quiet space relatively free of distractions.
  • Select a time of day when you both have lively energy.
  • Bring a project (or projects) you’d both enjoy.
  • If the person is shy about creative projects, issue a low-key invitation, such as, “Want to help me with this project?”
  • Allow the activity to unfold at its own pace, offering support as necessary and encouragement along the way. Enjoy the process.
  • If the activity doesn’t go as planned, don’t worry. Go with the flow and relish your time together.

(A version of this story was originally published in eCareDiary)

 

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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