Tag Archives: love

Expanding My Definition of Love

Love comes in so many magical guises. My journey with people who have Alzheimer’s has expanded and deepened my understanding of love. Here are some insights from others.

shadow hands

My friend Vicki always inspires and teaches me. She has early onset Alzheimer’s and her outlook is an embodiment of grace and spirit. She writes: “I have lost both friends and family members since I have dementia.  Some people are just so uncomfortable that they just cannot bear to see me go down hill.  I have lost a very good friend who just can’t seem to handle it.  I know that these people love me but they do not have the emotional fortitude to see the daily loss.  You will find out who really loves you when you get dementia because these are the people who will be there for you when you need them.”    — Vicki Stoecklin, Kansas City, Mo, retired designer

The True Meaning of Unconditional Love

hafizLinda Fisher is a tireless advocate and a caring person. Her words really move me. “Caring for my husband Jim taught me the true meaning of unconditional love.  I became fiercely protective of him and learned to love him ‘as is’ without looking back on the man he had been or forward to the man he would become. My love for him continued to grow throughout the ten years of his dementia, as he became dependent on me to be his advocate in all aspects.”  —  Linda Fisher, Sedalia, Mo, retired office manager, Central Missouri Electric Coop http://earlyonset.blogspot.com Early Onset Alzheimer’s: My Recollections, Our Memories (2012)

The Full Range of Emotions

Kelly Sheet, founder of the SpunkyCaregiver, offered these deep insights: “I have learned that love transcends any words and appearances. When someone has dementia, love is shared through energy and feeling. You can be vulnerable with people who are living with dementia. And it is a relief to be so open. Day-to-day we are expending energy to protect ourselves from saying too much or too little or the wrong thing. The great gift of loving people with dementia is that you can let go of those ideas, experiment with what a full range of emotions actually feels like. Without being judged, you can laugh spontaneously at some goofy moment, dance with abandon or hold hands with a stranger. Loving people with dementia helps me to feel alive. The hundreds of seniors I have known over the years have really taught me how to love more freely.” — Kelly Sheets, Founder, Sisters, Or, www.TheSpunkyCaregiver.com,dance

Every person teaches us more about love.

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

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Learning about Love through the Dementia Journey

This month, I’ve been asking myself and others, What have you learned about love from your dementia journey?  Here are some of the profound answers:

3 generationsI learned that it is redefined. I loved my mother as my parent, and then learned to love her as a child. And I would not trade that experience for anything.  Pamela J. Van Ahn, Executive Director at Caring Together in Hope, Inc., Atlanta, GA

I have learned that love remains, even as memory fails.  Long after your name is forgotten, there are still frequent glimpses of recognition that are very meaningful.  The Alzheimer’s patient does not become “a different person”.  They are much more “still there” than easily meets the eye.  With Alzheimer’s disease, things that have emotional context are remembered the longest, and love is a strong emotion. Max Wallack, research intern in the Molecular Psychiatry in Aging Laboratory at Boston University School of Medicine, Boston MA.  

love hands

I have learned so many lessons regarding love through my mothers journey with dementia.  Here are just a couple of them. There are multiple levels of unconditional love.  Each one is more precious and runs deeper then the next. “Letting Go” of our need to control is one of the most loving things we can do for a person with dementia and ourselves. Allowing a person with dementia to be in a loving respectful relationship, even if it might be with someone unexpected, is a gift to all and does not mean they love us less. Love runs much deeper than a name. We need to stop quizzing a person with dementia to check if they know and love us.  A name has nothing to do with the bond and connection between two souls.                                                                                                    Lori La Bey, Founder of Alzheimer’s Speaks , St. Paul, Minnesota, www.AlzheimersSpeaks.com  real love

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

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Appreciating the Power of Love

swans“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!.” lionsThose 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 amlaughing

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.

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

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A Love Story about Being Braver, Stronger, and Smarter

 “Where there is great love there are always miracles.”  Willa Cather.

I am always looking for wonderful love stories and I found this one when I was visiting the blog of one of my favorite writers, Louise Penny. I went to her site because I had just finished reading her book, A Fatal Grace, and I was feeling withdrawal. Plus, I knew her husband was living with dementia and I thought she might have some insights. She has some deep insights and she has generously given me permission to share them with you.

From Louise Penny:

Michael no longer knows my name.  And now needs help eating.  He can no longer walk on his own, and cannot read, or do puzzles.  He barely speaks.  He sleeps a lot, and I try not to take it personally, as though I am not doing a good job stimulating him.  But, poor guy, when I try to stimulate him, by singing or dancing or finding games that might interest him, he looks at me, smiles.  And falls asleep.

He remains the happiest man I know.  Smiling at everyone.  Reaching out for people’s hands.hands

And people are so very, very kind.  I could never have predicted that when people visit, the first thing they do is go over to Michael, introduce themselves even though he’s known most for years, and chat.  He loves it.

And then he falls asleep.

At bedtime, when he is finally and gratefully horizontal, I whisper in his ear.  Something that came out of a horrific event in 2014, when Corporal Nathan Cirillo was shot and killed by a gunman on Parliament Hill, in Ottawa.

As the young man lay dying, men and women ran over to try to help him. One woman, Barbara Winters, knelt beside him and whispered in his ear that he was loved.  That he was a good man and a brave man. She just kept repeating that.

And now, every night, after I turn the light out, I whisper in Michael’s ear that he’s a handsome man.  A kind man.  That he is thoughtful and funny and he makes everyone around him feel special.  I whisper that he is loved, and he is safe.  And then I kiss him good night. And he smiles.

Then I whisper to myself, “You are braver than you believe, stronger than you seem, and smarter than you think.”   #

To learn more about Louise Penny and her books and her ideas, please visit https://www.facebook.com/louisepennyauthor

Or subscribe to her newsletter at www.louisepenny.com

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

 

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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.guitar

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.cirque

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.  ta da 2

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“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.

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