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.

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

Linda 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,

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:

I 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.  

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  

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

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.

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

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.

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. 

 

The Ways the Cookies Crumble

I set my briefcase on my gritty kitchen counter and traced the raised gold lettering on the thick ivory card. “You are Invited to a Holiday Cookie Party,” the note read. The invitation was from a fascinating, creative, high–powered executive I had met several months ago. I was surprised and thrilled that she had invited me to such a gathering.

Each woman would bring a batch of home-baked cookies, she wrote. We would then get to sample all the cookies and bring a bag of treats home to our families. I adored the idea of getting to bring my teenage daughters such an array of home-baked sweets. I envisioned a room filled with charming baskets of star-shaped sugar cookies, generously topped with red or green frosting. I imagined a jolly basket of Santa cookies and a fragrant ginger-scented array of reindeer cookies. I fantasized about thumbprint cookies, shaped like snowflakes and gooey with jam, and about silky buttery sandies melting in my mouth. And…

Then I realized the implication; these holiday cookies would not only need to be beautiful, creative, and delicious, they would need to be presented in festive and unusual ways. I had never really made anything other than the occasional clumpy chocolate chip, peanut butter, or oatmeal cookie. Why hadn’t my mother been a more glamorous baker, I fretted, as I rummaged in the refrigerator for something to make for dinner. She only made the plainest of cookies—date crumbs, peanut butter, and chocolate chip. As I boiled water for pasta and heated up the jar of marinara sauce, a number floated into my head and I dialed it.

“If I go to this party, will you help me with a recipe and a cute idea for presenting the cookies?” I asked my friend Judith, who was graced with five-star baking abilities.

“Of course,” she said. Judith’s aplomb would fit right in at such a gathering. Briefly, I wondered if she could attend in my place and just deliver my treats to me.

I told my daughters the good news—in several weeks we would have our own private holiday cookie festival. Since our sweets were usually made by some giant corporate entity, they were ultra-excited.

A week later, I received a thick packet in the mail. Judith had selected a number of “easy” recipes for me. I smiled as I looked over the pictures of adorable cookies with a cute holiday twist. I frowned as I read through the baking instructions; each cookie demanded its own specialized pan, gourmet tool, thermometer, or esoteric ingredient.

As the day of the cookie party neared, I had no recipe, no cookies, no plan, and nothing good to wear.

That night at dinner, I said, “I don’t think I can go to the party.”

“Why not?” Sarah said sharply. She was thirteen and took promises and plans very seriously. Plus, she had a highly sophisticated taste for sweets and was looking forward to expanding her repertoire.

“I can’t just walk in carrying a paltry tray of blobby looking chocolate chip cookies.” My throat constricted and I wished I were a mother who could whip up a butterscotch soufflé from ingredients that just happened to be in my kitchen cabinets.

“Why not?” my older daughter Jessica said. Even during the holiday season, she kept to her black-themed wardrobe. She looked Gothic and serious as she said, “Everyone else will be all silver bells and fancy sprinkles. You will represent the good old- fashioned approach to the holidays; your simplicity will be refreshing.”

I took a breath and considered her words. If worse came to worse, I could always pretend I never saw those cookies before in my life.

That evening, my daughters and I made chocolate chip cookies and put them in a tin lined with aluminum foil. In honor of the season, I unearthed a shiny red bow to top the tin.

Walking into the party was like walking into a fairyland. Christmas lights lined the windows and a sparkling tree spread its branches into the living room. The dining room table looked like the December cover of Gourmet magazine. Stars, hearts, Christmas trees, snowmen, all the icons of the season were glowing with icing and sprinkles. Some cookies were nestled in hand-made wreathes. Others shone from star-shaped or tree shaped boxes. A miniature set of reindeer surrounded a bejeweled fruitcake. A galaxy of colorful star-shaped cookies decorated a tiered silver-server. I admired each display while looking for a quiet corner where I could tuck in my tin of chocolate chips. I finally settled them between candy cane cookies and gingerbread Santa’s.

My hostess offered me champagne and the conversation flowed. Then she announced, “It’s time to gather the cookies.” She had a large silver gift sack for each of us and encouraged us to take several of each cookie. As I toured the table, I sneaked a look at my humble confection. What if no one took any? What if I had to bring the whole batch home? What if… The doubts daunted me as I filled my sack with delectables.

“Who made the chocolate chip cookies?” someone asked. The room quieted and my breath quickened. As the silence spread, I finally said, “I did.”

“What an interesting idea,” someone said.

“I never would have thought of it. It’s comforting. These cookies remind me of my mother and home.”

I smiled as I put three Santas in my sack and headed for the reindeer.

That evening my daughters and I had a magnificent holiday feast, consisting of cookies, cookies, and cookies.

“Here’s the strange thing, Mom,” Jessica said, as she leaned back, sated. “Your cookies are really just as good as any of them. Not as cute, but just as delicious.”

“More delicious,” Sarah said.

I smiled, thinking that about my mom’s cookies when I was growing up. Maybe there was something about the plain old recipes offered in the plain old way, so sturdy, so unglamorous, and yet so deliciously like coming home.

Here’s to a sweet holiday season!

Deborah

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