Sparked by Words

Posts tagged ‘memory loss’

From Art Caves to Alzheimer’s

 

This is the story of how a book about World War II sealed the friendship between me and the woman who gave me the courage to write Where Did Mama Go?

It begins with The Caves of Perigord by Martin Walker. I read it because it describes some of the prehistoric cave art discovered in France, a topic this artist and art teacher has always found fascinating. The exquisite shard of ancient art is only a part of the story, as the novel reveals the dangerous work of the French Resistance during World War II. When I finished the book I gave it to my friend, Madeleine Nussen.

I was a novice Hebrew teacher, barely two weeks ahead of the kids in skills. Madeleine was experienced and fluent at the same temple school, and she graciously mentored me when I got stuck, which was about once a class. After she read the book, she told me something I hadn’t known.

The book tells in part how the Nazis forced French citizens to sit on the front and top of reinforcement and supply trains in order to deter the French Resistance from bombing them as the invaders subjugated France. Allowing the trains to pass meant a more likely victory for the Nazis, but sabotaging the trains meant certain death for those who rode the trains as hostages.

Madeleine quietly relayed her personal story when she returned the book. She was a Holocaust survivor, her father a fighter with the Resistance. At least once, teenage Madeleine sat on the actual train, exposed and vulnerable. Her father saw her and did not bomb the train.

I knew of course the historical foundation of the book. But that moment when she described her part as a hostage, the enemy trains stormed around us. The wind roared like a cyclone, the acrid steam burned my face. A story that would have made me screech in fury, she relayed with her trademark composed dignity.

A few years later the temple held a dinner my husband and I attended with my parents. My father had quietly told me a family secret I was forbidden to share. I kept the promise. My mother, always a gregarious showstopper, made instant friends with the four other guests at our table, which included Madeleine. My mom loved the limelight and the event gave her the chance to perform. Mom chattered as deftly as if holding court, the other guests enchanted by her. My father expressed irritation after a while, and mom quieted down.

Months later, I noticed Madeleine looking weary, an emotion she rarely conveyed. When I asked if everything was OK, she told me about her beloved husband, also a Holocaust survivor and a renowned cantor. Now he was living in a facility for those who suffer from Alzheimer’s disease, losing more and more of his identity and sense of presence every day. Madeleine was devastated because his most recent decline meant he no longer knew who she was – nor who he was. The Nazis had not defeated him, but his illness had.

It must have been because of Madeleine’s dignity that I felt comfortable enough to tell her my secret, despite my promise. “My mom has Alzheimer’s.”

“I know,” Madeleine said.

In the hallowed quiet between us, I realized she had spotted my mom’s illness at the dinner party. What my father and I thought was hidden as long as we told no one, was easily detected by Madeleine with her long experience in dealing with her husband’s disease.

Over the next years, Madeleine was a willing listener to my concerns and worries. Sometimes she gave great advice. Sometimes she just listened and let me vent my frustration, confusion, and rage. Always, she was a friend who kept my confidence and my mother’s secret.

My dad died nine years ago, my mom’s disease still so well hidden that some family members didn’t detect it. At his death, it became obvious that mom could not live at home, and I made the heartbreaking decision to place her in a memory care residence.

I regret my action every day of my life because it forced my mother out of her home overlooking the Pacific Ocean into a locked facility. There was no other way to keep her safe, to have her needs met 24-7 by a compassionate, professional staff.

I was already writing novels long before my dad passed, but my stories had nothing to do with Alzheimer’s. It took all my strength to deal with my mom’s mutable and fractured condition. I often drove to the residence in tears, knowing the woman I headed to visit was losing parts of herself as if she were a pillow ripped open, feathers strewn to the heavens. I often drove home sobbing about how the disease attacked my mom and left her tattered. I was too close to the volatile situation to be able to write about it, so I never tried.

Madeleine passed away about three years ago. Her death was painful for her family and friends, her loss palpable as a burn on flesh.

About two years ago I realized I knew more than many other people who needed, sometimes desperately, to find a safe place for mom or dad or husband or wife to live. Their loved ones who suffered with Alzheimer’s. I consoled, gave advice, and listened to the newbies, all of them wondering if they had made the right and the best decision.

Eventually I thought of Madeleine’s courage. A survivor of the Holocaust who had started her life again in a new country, a loving daughter, wife, and mother, a talented musician, a gifted teacher, and a compassionate confidante, she modeled for me that not only could I tell this story, I could show that living with this disease is miserable but possible. That being an involved advocate for the one you love is more important than making the perfect choice because there is no perfect choice.

Madeleine never knew I wrote a story about Alzheimer’s, but without her friendship I might not have done so.

Madeleine Nussen, zt’l. May the memory of this righteous person be a blessing. Thank you for giving me the courage to write Where Did Mama Go? I miss you but I carry you in my heart.

 

Note: I’ve written a novel, Where Did Mama Go? about the devastation Alzheimer’s disease inflicts on families. It’s in the process of being edited. Then I’ll start querying for an agent to represent my work. My credentials for writing this story are eighteen years of assisting my mom through the labyrinth of this illness.

 

Prehistoric art, Bison, Altamira Cave in Spain, courtesy CCO Creative Commons

 

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Coming Back to You

I’ve been away from this blog far longer than intended and was not sure how to return. Still sitting here in my house working at the computer, but not here on the blog. What do I say to those of you who’ve stayed in touch and sent notes of encouragement while maintaining the respect not to ask what’s taking me so long? How much do I reveal, how much do I keep private, even secret?

A long list of topics and partial articles waits to be written or completed. My anemic advice about writing, my head-over-heels book reviews, the Just a Thought series, and the longer articles that peek into my own history or divulge my current interests and run parallel to the subjects of my books. Same-same as what’s been on this blog in past, just more of.

I had a mom who suffered Alzheimer’s disease but my promise to her was to not write about her, her dignity and pride to remain private. “My Mom” in all my articles was someone else’s mom – or dad, husband, wife – in disguise. You don’t know my mom because she wouldn’t have wanted you to see her like that. So I promised her you wouldn’t, even though she was unaware of the promise.

I really wanted to write more on what I’ve learned about Alzheimer’s disease as an observer, as an anecdotist. My studies are personal and also lies. Personal because I sat by her side, watched, listened, interacted, cried, and pondered. Lies because when I told you stories about Mom, I made them up.

You might have figured out that Mom is deceased. Yes. All I’m going to say. Except…

This was not what I imagined when I first announced my Quiet Time. I thought I’d actually have an extended period to contemplate and reconsider, to rewrite my direction, to refocus Mom’s attention.

Death has its own way of reorganizing priorities. Instead of planning new activities geared to Mom’s newest state of presence, I planned a funeral, a shiva, a way to say good-bye, a propensity for getting lost, a need to be forgiven, and a means of going forward.

Today Mom would be 90 years old. A good gift for a 90-year-old might be a coupon book good for snuggles and kisses and walks in the park. A new blouse and a fragrant bouquet of pink peonies. A candlelit cake to defy dietary restrictions.

In Mom’s case a perfect gift would be a memory she could hold on to. Something from her childhood, like the day she glowed in the class spotlight for the story she’d written. Her first kiss, tasted years before she met my Dad. A new dress purchased with money she earned at her teenage job at the five and dime store. Any memory would do, even something I exaggerated or made up. Just to give a memory to someone with Alzheimer’s is the most incredible gift one can imagine.

Pay attention to that word incredible. Its weight throws the scale into panic, its force throws the dike wide open. Memory is the first lost cause of Alzheimer’s disease. Victims make up their lives anew and family members learn to play along because arguing in favor of truth never aligns with reality.

The ninetieth birthday party wasn’t necessary. Mom almost but in the end didn’t get that far. There will be no cake or gifts or photos. Mom was buried in the white lace blouse she would have worn to her party. She looked beautiful, and this I’m not making up. She looked ready to get up and blow out those 90 candles.

I’m coming back now. Back to writing on this blog. Back to writing books, querying agents, pleading for mercy, and all the other mishegoss on the potholed path to publication.

Back, to see Mom in a new light. Happy Birthday to you, Mom. I’m celebrating your life today.

Love you, Mom.

Miss you.

Shari

 

Photo from Bonin-Pratt family archives: Mom, Dad, me at 4, baby brother, Hawaii 1953