Relationships

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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Passing Down the Punchline: A Father’s Day Retrospective

This blog is a tribute to my father, an honoring of my amazing brother, and a chance to share one of my dad’s favorite jokes. I welcome your favorite jokes and I wish you a lovely day of celebrating good fathers. Warmly,  Deborah

THE JOKES ON HIM

formica tableIt’s the fifties. My brother Dan and I sit opposite each other at the Formica kitchen table; my mother and father sit on each end.. We are eating Swiss steak, mashed potatoes and mushy-looking peas. My father is telling us about this sales call he had today. As he begins the story, Dan and I listen carefully. We want to see who can be the first to figure out if it’s regular boring adult conversation or a joke.

“So the man says to me,” my father says.

I screw up my mouth and nod at Dan. He nods back. It’s definitely a joke.

Some fathers like to train their kids by tossing them balls, wanting them to hone their catching and pitching skills. Dad tossed us one liners and puns, watching to see how quickly we caught on.

“My brother called the other day,” Dad would say and we all believed that Uncle Lou really had called until we were socked in the stomach with the punch line.

As we got older, Dan and I learned to keep our faces deadpan, to give my father no hope, no clue that we knew he was trying to be funny. We learned to sit still for several seconds after we had been surprised by a punch line and then, dissolve into  spirited laughter if it was really funny or loud groaning if it was really terrible.

Despite all this exposure to fabulous stories, great deliveries and rollicking punch lines, neither my brother nor I are joke tellers. I like to throw spontaneous one liners into conversation, but cannot remember a long involved story. My brother has always been laid back, offering at most an occasional bon mot.

motelFast forward to the nineties. We’re at a family reunion and it’s raining for the third day in a row. Twenty of us are crammed into my parents’ motel room eating a picnic lunch off drooping paper plates. My nephews squirm around, playing with various plastic weapons; my daughters and my niece sprawl languidly on one of the queen-size beds. Mom and I and a couple cousins camp on the other bed. Dan sits in a chair, reading a Richard Ford novel. My father paces in front of the television.

The noise in the room builds and my father stands still, then smoothes his shirt.  I can tell from his posture that he is going to tell us a joke. My father does not silence the room. He does not have to. Dan and I are always alert for the first sign of our highest role: audience. Dan looks over at his two sons and cocks an eyebrow. I look at my daughters and nod once. They instantly quiet.

“This rain reminds me of the time I took my dog to the movies,” my father says.

Dan and I grin at each other. There is no dog in the history of our family.

dog in theater 3“This dog was smart and loved for me to sneak him into the movies.” My father’s voice is so smooth and lulling, I almost believe this dog was part of our household. “One day I got caught and the manager made me promise to never bring that dog to the movies again. But one rainy night, I couldn’t resist.” He looks to Mom for confirmation and good sport that she is, she smiles back. “I sneak the dog into the movies. As we are leaving the theater the manager pushes his way up to me, pulls aside my jacket where the dog is hiding, and says in an accusatory voice, ‘So, how did your dog like the movie?’

‘ Oh pretty well,’ I answer. ‘But he liked the book better’.”

For a moment, the room is still. Then my nephew slaps his thigh and we all dissolve into laughter.

“And since we’re talking about dogs,” Dad says, taking his rightful place in center stage, between the television and the dresser. “Our next door neighbor has the most obnoxious dog.”

The jokes continue, each grander than the next.

Right after the one about the woman and the dry cleaners, my brother suddenly says, “I had this experience with my shoes the other day.” His voice is calm and plain. I smile, figuring the joke telling is over and we are moving into general conversation. Then I listen more carefully.

Dan tells a long and complex story– decidedly a bold mood in this charged atmosphere. My father has a patient expression on his face. My brother is articulate and calm, no histrionics, no mugging for the crowd. He may simply be telling an interesting story. I pray, “If he’s telling a joke, let him tell it well.” Dan stumbles over a word and I wring my hands. I feel like I am watching a tennis player’s first time on the court in an intense competition. I want my brother to win.

And then, Dan delivers the punch line. It’s smooth and elegant; sliding into us so unexpectedly, so easily that even Dad is caught off guard. Even Dad has that moment of hesitation and that flash of realization before he bursts into laughter and applause.

applauseThe applause dies down and my father segues right in. Dan folds his hands, content. I smile at him. I have read different accounts of coming of age. Yet here is one I have never seen before. My brother, emerging from years of quietly being in the audience, elegantly seizing the stage and then graciously giving it back. He has been heard. He has let us know, he is his father’s son.

“It’s stopped raining,” one of the boys says. “Let’s go out and play.” With a great roar, the boys take their swords and rush out to the nearby playground. The girls gather their purses and go to the quick shop for a diet drink. The cousins go off to do some shopping.

The room is quiet now, just my dad, my brother, my mom and I.

“I had no idea that you were such a great storyteller,” Dad says to my brother.

My brother shrugs. “After a while,” he says, “you catch on.”

dog in theater

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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Four Fine Ways to Keep Remembrances Blooming

How do you celebrate Mother’s Day  or Father’s Day when your parents are no longer living? As the day approaches, I think of my parents and look for ways to keep remembrances blooming. During the years, I’ve explored ways to feel close with my mother, father, and other loved ones who have passed on. Here are four of the actions that keep me connected.

Dress to Connect

When I feel lonely for Mom, I like to put on her black blouse emblazoned with silver sequins. When Mom wore this blouse, it signified she was going someplace elegant.  She accompanied it with a long black skirt and high heels. When I put on my ordinary black slacks and black tennis shoes, I imagine my mother shaking her head. “Don’t you have any better shoes, dear?” My mother prods me from beyond the grave, intoning,  “A little lipstick would be nice.” Here’s the lovely part of our post-death ritual: instead of bristling at her grooming suggestions, I see how she wished the best for me and fondly remember her love of dressing up.

Feed your Memories

I still love to eat and share my parents’ favorite foods. My brother, who has untold culinary abilities, has mastered Mom’s butterscotch brownies and he has improved on her chocolate chip cookie recipe. He often bakes those for family gatherings and sometimes even mails me a box of nostalgic homemade treats.  As for my dad, he particularly liked Planter’s Deluxe Nut Mix. He adored the cashews, but he didn’t want to spend the money to upgrade to all cashews. He preferred to pick out the deliciously rare morsels, leaving behind a plethora of peanuts, almonds, and hazelnuts. In his honor, I often buy a can of mixed nuts. Did you know that memorial cashews have no calories?

Tell their Stories

We all have heirloom family stories that anchor us in our history. My father liked to talk about his growing up days in the Canal Zone, in Colon, Panama.  My mother favored her time serving as an Army nurse in Iceland during World War II. These were the stories of my growing up years and I think of them every time someone talks about Iceland, Panama, the Canal, or WWII. I have written some of them down so I won’t forget them. When I tell one of my parents’ stories, I feel they are in the room, leaning forward, smiling, and listening with delight. I like to share these tales at family gatherings and I like to tell them to friends. I also like to invite other people’s legendary stories.

Continue the Conversation

Sometimes I go on a solitary walk and talk to my mother. She loved birds and I point out the robins, cardinals, and sparrows on the route. I also tell her about my grandchildren, my work, and I discuss any dilemmas I’m struggling with.  My father loved being in the water and I often commune with Dad when I’m swimming backstroke. I tell him entertaining things that are going on and talk to him about my dreams and big ideas. My parents are still good listeners and I picture them nodding proudly and cheering me on.

A version of this article originally appeared on MariaShriver.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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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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Art as a Creativity Catalyst: Featuring Grace and Spencer Townley-Lott

How do we keep our sense of connection and creativity through the caregiving journey? That was a question I often asked myself. I wanted to share this story of an extraordinary couple– artist, dementia advocate, and social worker Grace Townley-Lott and her husband, puppeteer, actor, and playwright, Spencer Townley-Lott. Both use art as a creativity catalyst in their work and throughout their lives.

Their elders inspired them. Grace and Spencer were teenagers when her grandmother and his great-grandmotherwere going through a dementia journey. The experience was difficult and impactful.  

            Grace became a social worker, specializing in older adults and learning how to communicate with people who were living with dementia, often through art.

            “It’s incredible how the arts open people up,” Grace says. “Someone who hasn’t painted in 20 years picks up a brush and creates something beautiful.  Someone who hasn’t spoken in ages delivers a zinger of a one-liner. Every day, I see how creative people are and the connections that are still possible.”

            As Grace unfurled her work experiences, Spencer gained a new understanding of his great-grandmother’s last years. He used those insights to create a critically acclaimed play, Blossom. This play, which utilizes puppets, was funded by a Jim Henson Foundation Grant. It focuses on James Blossom, a retired painter who is living with dementia and his family’s changing relationships.

Caregivers often wonder: “How do we keep creativity alive?” Grace and Spencer were kind enough to share some ideas.

Engaging in New Endeavors: Grace

            Try to be in the moment, despite your list of tasks. Respond to and validate emotions. Be willing to go with the flow so you can allow creative sparks.

Pay attention to facial expressions as you invite your loved one to engage. If you start dancing, do their eyes light up and do they laugh? If you offer watercolors and cue your partner to touch the brush to wet paper, does he respond with joy when the color blooms on the page?  If you’re having a hard time getting your partner to take a shower, croon a song and waltz with him into the shower. If it doesn’t work, that’s okay, too! But if it does work, it’s a lovely and practical way to connect, create, and take care of physical needs as well.

Sometimes it takes reframing the situation to view the possibilities. An outside person or idea can often expand your thinking.

Creativity Tips for the Care Partner: Spencer

Sometimes, physical actions can help release tension to allow for more creative thinking. Deep breaths and stretching can help you loosen up at first. In the theater world, we start every rehearsal with a physical game or action to help us get focused and leave our stress at the door. Try wiggling and shaking your feet and hands, giving yourself a brief facial massage, stretching as tall as you can, and twisting gently left and right. You’re getting the blood flowing, leaving the worried part of you in the hallway, and getting ready to create.

Allow room for surprises. Try to set the tone by modeling joy and openness. Be willing to try again.

Connecting through Art: Grace

I love viewing art with people who have dementia.  Art is so subjective, so there’s no wrong answer to the question, “What do you see?” You can take that first question and lead it along into a fascinating conversation, one question at a time, building a fulfilling conversation with an individual or a group.

In these art viewings, a discussion about a painting can tap into emotions that would otherwise be left undiscussed, or it could lead into a beautiful conversation about the person’s childhood, for example. You never know where the conversation will lead! This creates a failure-free situation where a person with dementia can excel and their answers are valued.

Connecting through Puppets: Spencer

Puppets offer a level of separation for the care partner.  For people living with dementia, a puppet’s cues may be simpler to decode, dramatically expressing joy or sorrow.  The puppet can place a hand on a shoulder and offer many opportunities for sensory engagement.

Puppets can also encourage intergenerational play, creating connections between family members who may be unsure who to communicate with their loved one with dementia.

Keeping Your Creative Flow: Spencer and Grace

Flowing creativity

“Creativity is inherent in all of us,” Spencer says. “It’s a muscle you can strengthen. Be patient with yourself.  The first day, you can only do one push-up.  The second day, you can accomplish two or three. That’s what creativity and artistry feels like. Start small. You are laying the foundation.  And it gets easier.”

“Be present and be ready for anything,” Grace says. “By asking your loved ones for advice, truly listening to them, and just being with them, you can form beautiful interactions throughout life.”

To learn more about Spencer, visit

www.misterlott.com

To learn more about Grace, visit

gracetownley.com and theartfuloven.com

Grace is the Director of Truly Inspired Outreach and Education for True Care Home Health.

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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Sharing Ideas for Staying Connected

“How do we stay connected during the dementia journey?”  This is a question with dozens of creative answers. Recently, we spent time at Northland Shepherd Center, hosted by Dianna Englander. We  were sharing ideas for staying connected with the Together We Care Caregiver Support Group, a lovely gathering of family caregivers and friends.  

Caregiving is such a creative practice, demanding flexibility, humor, and the willingness to make mistakes and try again. We discussed ideas from Connecting in the Land of Dementia, including incorporating singing, laughter, and art into everyday life. We also explored the power of nature and talked about unique concepts for bringing the outdoors inside.  We brainstormed different ways we could prepare food together and connect in the kitchen.

Here are some extra ideas we learned from our audience. I’ve changed the names to protect people’s privacy.

Anne’s father, who was normally very active, became very upset when his care facility had to temporarily curtail his movements, due to a flu outbreak.

“I want to go to the hospital,” he told the care staff repeatedly. Finally, they called Anne and asked her to come over.

“Dad was just wild,” she told us. “So I asked him to take a deep breath with me, and told him we were going to watch a basketball game before we problem-solved.” They watched an hour of basketball, which soothed both of them.

“I want to go to the hospital,” her father said.

“Why?” she asked.

“So I won’t feel alone,” he said. “I’m scared to be alone.”

Anne realized how social her father was, always walking down the hallways, greeting people, spending time visiting. She instantly began to problem solve, getting permission to walk down the corridors, wearing protective masks, gathering phone numbers of her father’s friends at the home, so he could call them.

“Taking a break and doing something soothing first really helped us figure out the problem and then solve it,” she said.

…………………….

Before her dementia advanced, Sandra’s friend loved singing in the church choir. Now, when Sandra visits her, her friend frequently asked the same question over and over. Sandra turns to beloved hymns they both know so well and when her friend becomes anxious, starts singing to change the energy. Soon, they are both singing, as they have for so many years, the old hymns guiding them back to a deep connection.

…………………….

Patriotic songs inspired Alvin’s father, Fred. So often, Fred literally tuned out the singers who came to entertain at his memory care community. One day, the group began singing “The Star Spangled Banner,” Instantly, Fred stood and put his hand over his heart. He sang along and kept standing and singing through all the familiar patriotic melodies. Afterwards, he talked about his time in the service, breaking his usual stoic silence.

At the end, we all felt a sense of renewal and companionship. Sharing these important creative ideas had enriched our lives and inspired us anew.

I’d love to hear your ideas for staying connected. Please email me at myinfo@pobox.com.

For more information about the Northland Shepherd Center, visit http://northlandsc.org/about-nsc.html

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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An Insider’s Look at True Love: Charlie and Elizabeth’s Story

For years, I interviewed fascinating couples every week for a column in the Kansas City Star. Talking to people who are in love is always inspiring; often couples have to overcome enormous obstacles to bring their relationship into reality. One of my favorite stories stars two friends whose love and cosmic connection shines out from their faces and rings out with their words. Here is an short version of their beautiful story, an insider’s look at true love.

**

The coffee date was going better than Charlie, age 60, could have ever imagined. Just a month earlier, his best friend had burst into Charlie’s dark apartment and roused Charlie from his lethargy, saying, “You need to open up these windows and let some light in. You should start dating.”

“Who would go out with a guy who has Early Onset Alzheimer’s?” Charlie asked his friend.

“Maybe you should find out,” his friend replied.

So Charlie Miller pried himself out of his depression and joined eHarmony. And this coffee date with Elizabeth Hack was the result.

 

Elizabeth, age 55, was brilliant, interesting, energetic, curious, and shared many of Charlie’s interests. When she asked Charlie what he liked to do, he mentioned listening to music, attending theater, visiting with friends and volunteering for the Alzheimer’s Association.

Elizabeth knew nothing about Alzheimer’s. She asked, “Does someone close to you have the disease?”

“Yes,” Charlie answered. He wanted to say more but the words stuck in his throat. He had never envisioned this casual meeting could possibly turn into a romance. Yet he was already comfortable with Elizabeth and felt their relationship was meant to be.

Over the weeks, they continued seeing each other, meeting at concerts, going to plays, and exploring new restaurants. As their friendship deepened. Charlie knew he had to share his diagnosis with Elizabeth and he worried she wouldn’t be able to accept it.

But before he had a chance to broach the subject, Elizabeth, wanting to learn more about Alzheimer’s and about Charlie’s interests, visited the local Alzheimer’s Association website and noticed a picture of Charlie, as a volunteer and a person who has Alzheimer’s. She was shocked, dismayed, and confused. But she was also in love with Charlie; his diagnosis did not diminish her deep feelings for him.

 

Charlie suggested she meet with his social worker at the Association to learn more about the disease. Elizabeth did that and though the information was daunting, her connection with Charlie was strong and true; she, too, felt they were destined to be together.

They began traveling and made plans to move in together.  In a vineyard restaurant in Napa Valley, Charlie proposed and Elizabeth said Yes. Today, they are living happily, grateful they have found each other

“None of us know what will happen next,” Elizabeth says. “Just the other night, we were at a dinner party. One friend was just released from the hospital after heart surgery, and another friend was facing a hip replacement. I felt concerned for my friends and I felt so lucky that Charlie and I were happy and together. We are dedicated to living with joy and curiosity in the present moment.”   

 

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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Five Ways to Make Valentine’s Day Special for a Loved One with Dementia

candlelight dinnerMy parents liked to celebrate Valentine’s Day with dinner and dancing.  Years into my mom’s Alzheimer’s journey, my parents’ love hadn’t diminished, but my mom’s capacity for going out to dinner and dancing had drastically decreased. I saw how blue my father was—one more event he had to give up, one more change in the woman he loved—and I searched for alternatives that might cheer him up. Here are five ways to make Valentine’s Day special.

Look for a favorite thing. Seek one simple pleasure your loved one might enjoy. Mom loved potato soup and chocolate and fresh strawberries. These were part of our celebration.

Nurture yourself: include your own favorite thing. Bring yourself into the celebration and include something that makes you happy. I brought foods my father and I both liked as part of our little party.chocolate strawberries

Pick several ways to express your love.  Poetry, music, gifts, flowers, and photo albums—you can use any of these resources as a catalyst to talk about your feelings. Dad and I sang Mom old show tunes and love songs, music she really enjoyed. Mom adored Shakespeare; we had a couple of sonnets on hand.  She and Dad had once created a beautiful flower garden; Dad brought her a single red rose.

Take joy in the simple act of expressing yourself. Being with my mom was a chance to really practice the mythical “unconditional love.” Mom couldn’t tell me she loved me. During one Valentine’s Day celebration, she fell asleep while I was holding her hand and talking sweetly to her. But there was a comfort in expressing my love and I kept on talking.

Celebrate love in all its glorious guises. During their long marriage, my father had walked into a room millions of times and often, Mom had been busy and hadn’t particularly smiled or remarked. But with her dementia came a deep dependency on Dad. When Dad walked into a room, my mother’s face lit up. My father basked in that light. The sparkle in my mother’s eyes was the new, “I love you, darling.”  The light said everything my mother could no longer say.rose

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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Five Secrets For Making Date Night Great

I caught up with Nettie Harper and Kelly Gilligan, co-founders of Inspired Memory Care, Inc. as they were rushing down the streets of Manhattan, off to consult with a client. I loved hearing the city sounds, horns honking, cars edging past, a lone dog barking, as they shared their five secrets for making date night great. (I have changed the names in this story to protect people’s privacy.)

During my mother’s journey through dementia, my father was always seeking ways to stay connected with her. He would have loved the ideas in this article.

 

Five Secrets For Making Date Night Great!

Margaret slipped on a string of pearls and surveyed herself in the bathroom mirror. Her royal blue silk dress, one that her husband Harold had bought her for their 40th wedding anniversary, still looked good. She fingered her hair nervously and hoped this evening would go well. Their last weekly dinner date had been a disaster. Harold had felt uncomfortable in the restaurant, even though they’d chosen it together. He picked at his food and barely spoke a word. Margaret had to hold back tears as she looked around the brightly lit room and envied all the happy couples and families, laughing, talking, and savoring their food.

Tonight, she vowed, would be different. Tonight, she was prepared, coached by Nettie Harper and Kelly Gilligan of Inspired Memory Care, Inc, in Manhattan, NY.

She’d chosen a quiet restaurant and reserved a cozy corner table, away from the bustle. Harold’s face tightened as they strolled in, but she took his hand and he squeezed hers. After they settled into their seats and ordered their meal, the dreaded silence descended.  She was about to say, “Do you remember the time we took my cousin from England out to dinner…?” but she bit her lip. Harold’s eyes went blank when she prodded him for specific memories.

Instead, Margaret unfolded an article on sailing, one of Harold’s passions, and offered it to him. “Could we read this together?” she asked.  The large print made it easy to see and Harold began reading aloud, weaving in the open-ended questions Nettie and Kelly had written in for them to discuss.

“What does this make you think of?” he read, after a few moments.

“The sea,” Harold said.

Margaret took a turn reading aloud, and Harold leaned forward a little.

“Would you ever go out on such stormy seas?” she asked.

“If I felt strong I might,” Harold said. “I always liked sailing with you.  Remember that time with the snow and the animals? Those big fish?”

Margaret smiled and took Harold’s hand.

“That was our whale watching cruise. I do remember. I really liked the penguins.”

“What did I like?” Harold asked.

“The glaciers,” she said. “And the dancing.”

In their work, Nettie and Kelly often coach care partners like Margaret, offering creative ways to stay connected with loved ones who are living with dementia. Their idea of bringing along an article on one of Harold’s favorite topics transformed the dinner into a time of wonderful sharing. On future date nights, Margaret continued to bring along articles on topics of great interest, as conversation starters.

Nettie and Kelly’s company, Inspired Memory Care, Inc. (IMC), is founded on the belief that older adults, both with and without memory impairment, should have access to life-enriching, esteem-building experiences, sharing their wisdom and pursuing their passions each day.

“We encourage couples and families to commit to rituals and set aside time together, just like you would without a memory impairment,” says Nettie. “Date night is an important part of the week, a chance to do something special and unique.”

“We coach people to ask open-ended questions, such as, ‘Would you rather..’  “Would you ever…’ ‘Tell me more about…’” Kelly says.

“‘Tell me more” is one of the strongest questions you can ask. Frequently words come flooding out.

After posing an open-ended question, they encourage care partners to wait, allow silence, and give people a chance to respond.

“If we jump in and give the answer, we’re taking away the strength of the individual,” they believe.

So what are the five secrets to a successful date night?

  • Bring a conversational catalyst, such as an interesting article to discuss.
  • Ask open-ended questions.
  • Wait lovingly for the answers.
  • Meet people where they are.
  • Celebrate your time together.

Use these five secrets for making date night great and create a meaningful and connective atmosphere — for any couple or family — regardless of cognitive abilities!

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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