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The Sacrament of Cookies

Cookies for Arden flashed on my calendar that Friday. It was time again for the weekly rite.

IMG-3186Arden is my mother’s home. Her care home. Mom has lived there for five years, just the past week. She lives amongst sixty-some residents who experience some form of dementia or memory altering condition. Mom has outlasted at least a third of the residents who succumbed to death, departed through lack of funds and or the need for a environment more suited to a particular condition. However, it is unlikely Mom will beat out Miss M., currently careening into her hundreds.

Five years was an eternity to evaluate the relationship I had to my mother’s disease. But the span offered me the gift of not only loving and caring for Mom, but of embracing other residents and caregivers.

It was on a different Friday, a year or so ago, the notion of “Cookies for Arden” was mixed, rolled, baked, frosted, and served.

I was departing the city for the weekend. The cookies were essentially a bribe to the caregivers to watch over Mom for the weekend (as if they didn’t already do that with such care).

Regina, an older caregiver, was delighted when I produced the sweet bounty of colorful tea cookies boxed up from Busken. Jillian, Mom’s most consistent caregiver, groaned. She had been trying to lose weight, despite chasing after the ever-active residents and her obligation to feed, clothe, and bath 15 women and men.

When I held out the box, Mom’s hand aimed for one on top. She grabbed several cookies, denting the swirled frosting on each.

Another resident, B., who was charming and cunning all in one instant, beckoned me towards her. “Hey, I’ll pay you if you bring me in a full box for myself.”

“And they better be Busken. Those Servatti cookies are Italian and they’re not made with the same butter as Busken.

B. had insulted a whole forest of my family trees and was clearly wrong in her presumption that Servatti cookies were made by Italians. The bakery was named after a cafe where the cookies were sold in Munster, Germany, in a location near the Church of St. Servatii, an Italian saint. And, the cookies were made by Germans. But B. also made a point. I, too, relished in the Busken cookies over Servatii’s.

Astounded by such reception, I erratically continued the tradition of bringing in the cookies. Always on a Friday, but not every week.

When I finally typed the entry Cookies for Arden in my calendar, I found that I routinely fulfilled my duties.

The same duty my mother once fulfilled on a September day, in 1994, for my marriage to Devin. My mother baked four of my favorite varieties of her Italian cookies. Pizzelles, rolled Italian cookies, nutroll, nut horns. She obsessively placed them in old May Company shirt boxes layered with waxed paper, and transported the goods from northern Ohio to Cincinnati in the back of Dad’s suburban. My entire family relayed the cargo across Fountain Square through Oktoberfest to our wedding reception at the Banker’s Club, ten stories above.

No image better signified Mom’s dedication to cookies as consecration than that of white department store boxes filled with cookies, bouncing along the heads of siblings towards the delicacies’ eventual consumption that night.

No matter where I am in the world – at home with the dog, in Washington Park, in Oregon or northern Ohio, if its Friday, Cookies for Arden pops up on my phone screen. And I smile.

On the most recent Friday, the cue flickered on my screen while I was in the midst of a neighborhood walk through West Price Hill.

“Yes, yes,” I spoke out loud to the phone. “I got it.”

Hours after my shower, I stopped at Busken Bakery, only to find the bakery cases emptied. I was stupefied. “Where are all the tea cookies, where are the sprinkled ones?”

The clerk offered me a morsel of relief. “Oh don’t worry. They’re in the back. We got wiped out today. It was back to school week.”

In a matter of minutes, the clerk loaded up a box with piles of red, blue, white and sprinkled mounds of butter. (I do wonder who decides on the color scheme each week).

When I arrived at Arden, the receptionist spotted the gold container with a plastic window into the world of delight. “It must be Friday.”

I lifted up the box with a broad grin on my face. “You bet.”

As I entered the kitchen of Mom’s hallway, many of the women were still seated around their breakfast table, including Mom.

“Hello, girls.” I announced. “I’ve got cookies.

Miss J., the other Miss J., lit up at the word, “cookie.”

I sauntered over to Miss R., relegated to a corner table filled with wooden abacus like toys, and she took a pink one. “Thank you,” she mumbled and her visage returned to a blank stare.

Miss M., known for crying without tears ( which may be a condition known as pseudobulbar), accepted a green one from me. However, not even cookies could stop someone from overcoming that condition.

Again, Miss B. proposed payment for the entire collection. I politely declined, though she was good for her word and the money.

FullSizeRender (60)Mom finally acknowledged my presence – and that of the cookies. She waved her hands in the air. “Hey, hey.”

I inched towards Mom and presented to her the box resplendent with rainbows. Mom fingered three of them, placed the first one wholly in her mouth, and clasped the other two, again crushing the swirl of icing between her fingers.

I stashed the remainder on top of the microwave, where all the staffers would know where to look for the prize. The hiding place was like the cookie drawer in our home on Lincoln Street. But Mom never stored her good cookies there, only the packaged ones. The good cookies were kept locked away in old Charles’ Chips cans, like the sacramental offering they were.

At the last minute, I swiped a cookie for myself, to join in the ceremony of cookies. It was the closest I came to receiving a blessing that morning.

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Do Caregivers Experience Sympathy Pains?

IMG_7456Couvade syndrome. Sympathy Pains. It’s not just for pregnancy anymore.

My mother recently was hospitalized for a soap-swallowing incident. Ironically, as I observed and helped her to recover normal swallowing functions, I began to experience swallowing challenges of my own.

When she has had what I perceive to be, but she cannot share, hip pain on her right side, suddenly, I throw the right side of my back out, reaching in for a load of laundry.

When she aches. I do. When she smiles. I do.

Our pain is so intrinsically connected, that where her pain starts and ends, I cannot detect.

Couvade syndrome, also called sympathetic pregnancy, is a proposed condition in which a partner experiences some of the same symptoms and behavior of an expectant mother. These most often include minor weight gain, altered hormone levels, morning nausea, and disturbed sleep patterns. In more extreme cases, symptoms can include labor pains, postpartum depression, and nosebleeds. The labor pain symptom is commonly known as sympathy pain.
Couvade syndrome is not recognized as a real syndrome by many medical professionals. Its source is a matter of debate. Some believe it to be a psychosomatic condition, while others believe it may have biological causes relating to hormone changes.

I am convinced the same sympathy pains present in pregnancy, of which there is no medical evidence, are transmutable to those who are caregivers, those who are in a constant state of worry, obsession and love.

As such, I find myself wondering how connected am I to her brain health? What is the state of my own? Will I experience the same sort of memory loss that so devastates me at times? What would I want to tell my children, my husband, who ever is left holding the bag full of tricks to make me tick?

A cousin of mine, Debbie Wick Herd, recently posted a quote related to a similar theme of If I get dementia.  The prompt floated around in my head for days as I considered what would really be important for my loved ones to remember.

I wanted to write how I have coerced my husband to sign an agreement that he would pluck my white chin hairs and for my kids to make certain that I was served bacon at each meal.

But I went with authenticity instead of the truth.

 

If I Get Dementia

I want you to steady a pen
in my hands that ache to be of use,
roll out the paper in front of me
or flip on a computer
if I am still adept
at that
which I think I will be –
but may forget.

I want to still write
to feel the pulse of waiting
endlessly for the muse to strike
heartbeat bursting through my chest.
For her to paint a picture
– with words
which rush to ink the thin wood
– with words as broader strokes
this time, because though the mind
has shut down
the heart has opened to a
wider landscape
than I might have guessed.

I want you to edit my words,
craft them as you would sculpt
a bust of my being.
You will know what they mean.
Readers have always known better
than writers
what their words really
say.

Do not fret for an agent
or whether or not to publish.
The words will find their way
in the world.
They always have.
They are like worms digging through
the refuse of human tragedy
or wiggling to the top
of human triumph.

If I get dementia,
read me stories.
You will find my most treasured tomes
tattered and scattered throughout
my life.
Then read me something fresh.
Not news, but a crisp voice,
with a new throated call
to keep the niggles at bay.

And last, read me my own words
so I may recognize them still
and say goodbye
to some of the world
I am leaving behind.

 

Annette Januzzi Wick

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Hugs Not Hikes

Every year, I say, “I’m not gonna do it.”

Register for another walk, another march to “end” a disease. Another two-mile jaunt with balloons, strollers, drawn-out faces or heavy breaths. Another fundraiser where one can secure a FAST PASS, meant for the elders perhaps, to the front of the registration line or be handed a bag of goodies for sponsors or items not needed.

My mother’s condition was never diagnosed as Alzheimer’s, based on scientific testing, hers was of the slow-slide dementia variety. But there is no “walk for dementia awareness”, so naturally most efforts fall under the Alzheimer’s category, because its an identifiable name.

FullSizeRender copy 10“I’m not gonna walk, to end Alzheimer’s,” I say, as I sit with Mom these days, and wonder how she is still here, when her present lasts only seconds and her past does not exist. Then she glances at me, and smiles. Mom’s is a child-like smile, unlike any witnessed in younger, more somber photos of her, as if not wanting to participate in the ritual.

Mom’s smile causes me to gasp, especially when she says goodbye to my son, off to college. He won’t see her until Christmas. She is seated in the sunshine on a worn wooden bench in full view of the burnt orange mums recently planted, and the fountain which will be turned off soon, its gurgling gone away. My son leans his lithe body into her and gives one last squeeze. Mom receives the squeeze with grace.

She reaches up, beaming. “Goodbye, sweetie,” she says, brushing his cheeks with her still soft hands, as if years of Jergen’s lotion really did the job. I am near tears, remembering how she used to cradle a five-pounder in her arms. Nana’s little snuggler.

“I’m not gonna walk this year,” I think, noting her stature has shrunk now, following two seizures, which impacted her posture. She has a permanent “lean in” which would make Cheryl Sandberg jealous. As we stand and I try to straighten her, l lift her arms past the shoulders and tell her we are practicing sun salutations. Mom would kill me if she knew this was yoga.

She wobbles to keep her balance while I support her arms overhead. Then, she really leans in – to me – and nestles into the crook between my head and heart. She has become the snuggler now. Clutching, grasping, patting my back.

“I’m not gonna walk this year,” I tell myself, then encounter the brave caregivers who stroll corridors with or chase down Mom and respond to her every need. Or I am met with the real, live bodies of other residents in mother’s care home. With Jim and Ella, I am discussing the pope. “Well, I haven’t seen him in a while,” Jim says. And Ella says, “I really haven’t been watching television,” despite my last visit when Ella was in the room while we were watching news about the pope’s upcoming visit.

“I’m not gonna walk,” I say. Then Matty smiles at me while eating a late lunch or early dinner, as I spy her through the window of her dining space. She rarely is without grasping the arms of a male, whatever male is in her reach, to lead, coax, sit with or share. I wonder what her marriage must have been like.

Then I sit at lunch with Madge, and she says, “Everybody get out of my house.” And  I’m ready to high tail it out of there, given her mood shifts. But I don’t.

Or I place a red cowboy hat on Sue Ann’s head, for “cowboy day,” knowing she used to listen to Johnny Cash and Dolly Parton. She giggles and hums.

“I’m not gonna walk, “I say. Then, I’ll lead Mom around her hallways, occasionally attempting to move her outside because it’s warm. She is reluctant because if the sun is not out, she doesn’t consider the temperature warm.

To exit, we have to dance around Gerry, the caregiver, and another resident, Karen. Karen’s young life at age 60 was once full. It still is, only now her days are spent walking, walking, walking. She never sits long, not even to eat. She is thin, worrisome on her best day, agitated on her worst.

“I’m not gonna walk,” I think. Then Karen’s eyes light up when she spots me. I hold her in a long embrace. Karen has a grip on me and I am OK with that, despite Mom’s impatience. “C’mon, c’mon,” she chides, moving me out of her way.

I wish this walk wouldn’t use such an impractical phrase as, “Walk to End Alzheimer’s.” The writer in me believes the slogan feels more like a gimmick than goal. But what I really want is for walks to be replaced by hugs. Hugs to raise money. Hugs to end our fears. Hugs to “lean in” to the nakedness and vulnerability we have all felt at times. Hugs to remember the humans inside each of these creatures that look, sound and yes, even act like the rest of us.

Regardless, this year, I’ll walk.

But next year, I’m gonna hug my way through the day, knowing that fierce hugs ignite a brain in a way medicine and marches cannot.

 

 

 

*All names, with the exception of Mom’s, have been changed.

 

 

 

 

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