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

My 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.

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.

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.

CITLOD very smallLove in the Land of Dementia_cover

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.

CITLOD very small

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

My 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.

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.

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.

CITLOD very small

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.

CITLOD very small

Appreciating the Power of Love

“How long have you been together?” the younger couple asked Ron and me.

“Twenty-two years,” we answered.

“Wow!” they said. They’d been in love for seven months and our decades-long romance must have seemed exotic and slightly unbelievable.

“What are the secrets of a good relationship?” they asked. “Please share your wisdom.”

First, Ron and I basked in the idea that two people believed we possessed actual wisdom! Then we shared our insights.

How We Learned about Love

Our insights came from growing as individuals and as a couple during our wonderful long relationship and from earlier relationships that had helped us become our true selves.  We also learned from watching our parents maintain their relationships in the face of dementia.

When Ron’s father Frank was in a memory care unit, Ron’s mom Mollie told her husband, “I love you so much.” Frank replied, “Not as much as I love you!.” Those were some of Frank’s last words and that sentence stayed with Mollie through and beyond her grieving.

During my growing up years, my father was circumspect in declaring his love for Mom. But when she slipped into dementia, Dad showed me what a true romantic he was.  He treated her like he was courting her; he showered Mom with compliments and kisses and frequently he expressed his love for her. Even when she could no longer talk, she still enjoyed her favorite foods—he faithfully fed her sliced strawberries and chocolate candies.

Love Me Tender, Make Me Laugh, Always Have My Back

My parents were my role models and I also learn an enormous amount from the couples I interview every week for the love story column I write for the Kansas City Star Magazine. Here are some of the qualities people most love about their life partners and spouses.

Loves me just as I am

Takes care of me/Always has my back

Makes me laugh

Shares my values/ Complements me

Works hard/ Is honest and reliable

Always puts other people first/ Always puts me first

Inspires me to be better/ Appreciates me

Love Lights the Way

Some months ago, Oprah had author, visionary and cultural mid-wife Jean Houston on her TV show. “What do you wish people knew?” Oprah asked Jean.

“I wish people knew how powerful love is,” Jean answered.

That was one of the grandest lessons from my journey with my mom through her dementia: the power of love. Her love lasted all her life, far beyond her memory of things and people. Her love was a spark that lit up her life and mine.

Share

Appreciating Who We Are

A man who is living with Alzheimer’s strides onto the stage and people applaud wildly. His son leans across the drums and hands him his guitar. His daughter, poised on the banjo, subtly reminds the man to look at the monitor so he can remember the words to the songs.

Everyone on stage is tuned into making the performance a great experience for the man and everyone in the audience is eager to hear from him. “So what if he sings Rhinestone Cowboy twice,” says one fan.

This scene is a snippet from Glen Campbell’s documentary, “I’ll Be Me.” As I watched Glen connect through his familiar music and bask in the support of his family and fans, I wished that every person could be so supported and celebrated, particularly those who are living with dementia.

As we approach Valentine’s Day, I wanted to share this essay about appreciating each of us for who we are. For me, it’s a reminder to celebrate love and the creative spirit in all their glorious guises.                           

            Please Take a Bow

                  By Deborah Shouse

The stage thrilled with activities. One man juggled 12 balls. From overhead, a woman floated down on streamers of royal blue fabric, and then wound herself back up to the arena ceiling. Lithe performers dressed as jungle animals danced and tumbled. I sat in the audience, awed by the amazing creativity of Cirque de Soleil. I hardly knew where to look, so much was going on. But one performer consistently drew my attention. A woman dressed as a wood nymph walked around pointing to whichever feat she most admired. As a man juggled dangerously long sticks, the nymph held out her arms toward him, her gesture saying, “Ta da, Look at this!”

The singer burst into an acrobatic aria and the wood nymph ran towards her, unfurling her arms in another “Ta Da” gesture, focusing our attention and directing our applause. One act after another somersaulted, soared and danced and the wood nymph was always there to shine extra attention on them.

Afterwards, I stood in the corridors with Ron and our friends, Jacqueline and Michael, talking over favorite parts of the show.

“I really liked the wood nymph,” I told Jacqueline. “We should take turns doing that for each other.”

She agreed. But then we both wondered, what would we applaud? Jacqueline and I did our writing work practically immobilized in front of the computer. Michael was a legal aid attorney and Ron had an antique shop. The last time any of us had even somersaulted was eons ago, in our firefly laden summertime back yards. Yes, we juggled, but it was the usual middle class shticks, wildly tossing around work, family, exercise, community, friends and more. All the more reason, I thought, to find an appreciator who understood when we performed at our personal peak.

As we discussed the amazing acrobatic skills we had just seen, I imagined going over to Jacqueline’s. There she sits at her dining room table, her computer screen bright, her fingers nimble. She is a great writer and she is working her craft. I stand nearby, face the imaginary audience seated in her living room, and hold out my arms, gesturing proudly towards Jacqueline. She smiles shyly and I hold my appreciative pose. Then Michael walks through on his way to the kitchen.

“Hi Deborah, what are you up to?” he says.

I nod towards Jacqueline, who is writing briskly, and unfurl my arms towards her.

“Oh, yes, I see,” Michael says. He applauds. Jacqueline sits up straighter and allows herself a little bow. A lot of people don’t understand what hard work writing is and I am here to make sure her audience appreciates the subtlety and strength of this art form. Suddenly, Jacqueline stops. I imagine a drum roll as she presses her lips together, furrows her brow and stares into space. She is trying to think of the right word. We all know how hard that is–it’s the equivalent of the back flip followed by the double mid-air somersault. She shakes her head in despair. The audience is on the edges of its seats, mouths agape, hearts racing. Will Jacqueline find the word? Or will she crash to the ground, her sentence in shambles, her paragraphs paralyzed?

Finally, Jacqueline grins and returns to the keyboard, her fingers dancing. I point to her—“TaDa”– and her audience erupts into applause.

Meanwhile, while I daydreamed, the Cirque de Soleil arena was emptying. We walked to our cars and the image of the wood nymph stayed with me all the way home.

As Ron and I walked toward our house, I remembered a conversation we’d had several weeks ago. “Why don’t you ever mention how great the yard looks?” he’d said. “I’ve worked hard on creating this.”

I had started to defend myself. Then I realized he was right. I liked the yard but its lushness was part of my normal world, the world I rushed blindly past. I hadn’t taken time to appreciate all the effort Ron had put into creating it.

Now I stopped on the sidewalk. The porch light illuminated the plants and ivy as I swept my arms toward the yard, then back to Ron.

“Ta da!” I said, pointing to his lawn, then applauding him. He stared at me, and then smiled.

“Thank you,” he said. “Thank you for noticing.” He took a bow.

I followed him as he left the stage and went into the house.

Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.