Organizing a Mind – Writing Our Lives as Caregivers Workshop

Writing Our Lives as Caregivers 8-2017 (1) (1)-page-001When my mother began her slow waltz with dementia, I was living in southern Ohio, dancing in new love and blending families. Mom still resided up north, near Cleveland. Each time I visited, I had witnessed various versions of a mom I didn’t recognize. Each time I drove back to Cincinnati, I was steeped in the shadows of what was soon becoming, or had already become, the darkening of her memory.

The story of how she got from there to here has been the subject of poems, blogs and novels. But the narrative of writing as a tool to forge a new relationship with my mother is a story that is boundless.

Not long after I accepted (maybe not really) Mom’s stage in life, I had been listening to a podcast about an Alzheimer’s writing circle, begun by a well-known psychologist, Dr. Alan Dienstag, and famous novelist/playwright, Don DeLillo. I was prompted to undertake the same.

One day, sipping coffee with Leigh, a good friend from Loveland, I mentioned the prospect. She dropped a hint into our conversation.” If you ever do that, let me know. I might have some time to help.”

Thus was born Found Voices, a writing circle for individuals with mild to moderate cognitive loss who lived at the Alois Alzheimer’s Center in Cincinnati, a facility renowned for their approach in caring for residents, and also renowned for their costs.

The program director not only welcomed my pilot program. She connected us to the executive director, who promptly paid us well for such work. Little did either know, at the time, I had proposed the program to alleviate guilt I was accumulating, while not traveling the miles to see Mom.

For three years, Leigh and I plotted and planned out themes for our circle: Flying and planes. Summer. School. Baseball. Home. Love.

The participants who were with us those three years became dear to us. Mary Lou, Willhemma, Betty. Dotti. We embraced their lives and their hearts. Whatever life those residents had left to give, they gave their all.

That work that propelled me forward to write about my own mother. (www.findyouinthesun.com) That work became the seed in a relationship with Pauletta Hansel, Cincinnati’s Poet Laureate, whose own mother experienced dementia. And the two of us arrived simultaneously at the intersection of art and life. We have decided to stay there a while.

Last summer and winter, through the Alzheimer’s Association of Greater Cincinnati, we offered sessions for caregivers to write and share their musings and mutterings about their loved one experiencing Alzheimer’s or dementia. Or to write and share about the struggle in their own lives, as they contemplate a future without their loved one or a future that might closely resemble that of their mother’s, like I often do.

The poem below was excerpted from Pauletta’s blog, from our summer workshop.

The Alzheimer’s Association of Cincinnati has been enthusiastic in their support of our work. We will offer three caregiver workshops, two in coordination with the Memories in the Making program, and one trial run with professional caregivers, because they too have stories to tell, especially when they sit in for a family who can’t or won’t.

FullSizeRender (34)I have made a life out of my mother’s life. Not her past one, or ones, though I don’t know if she has nine or not. But the life I made has been created from her present one. It’s not the life I planned for either of us. My mother was the extraordinary organizer. She would have never tolerated an unorganized mind. But she tolerates me. And in the interim, I help others organize their mind and their love.

FREE workshops August 12, October 21 & February 10th. Sessions begin at 9 a.m. Each session is hosted at a different venue. Check the website for details.

 

This poem is a weaving together of snippets of writing from the participants of Cincinnati Poet Laureate Pauletta Hansel’s workshop at the Alzheimer’s Association of Greater Cincinnati on July 16, 2016. Innumerable residents of Cincinnati are caring for loved ones with dementia —mothers, fathers, husbands, wives. Their experiences of tenderness and loss are all too often untold. Credit to Pauletta Hansel for the weaving. Read more.
For As Long As We Can: Writing our Lives as Caregivers

There is much more hurting than healing
in our lives right now.
An incredible sadness.
Robbed of all this time,
many years, with my mother.
I let go of the colorful gal I once knew;
now her words cut through me like a machete,
leave a hemorrhage like no other.
All this before I even sit down.
I want so desperately to believe
God has a miracle for my dad,
for my beautiful Gina, in beautiful Bermuda—
how I would love to take her again,
away from the tiny world she knows
—and the bitterness of that impossibility.

I hold to every word, to every syllable,
to every streak of black
remaining in Mom’s soft white hair.
I know I am still her baby girl.
I cling to my old memories.
I don’t want it to change, but it does.
But then, a conversation—mother and daughter.
Mom hunched her shoulders
and walked in a silly way, making me laugh.
She doesn’t need that jacket on,
but she’ll wear it anyway,
singing “76 Trombones” and I join in.
It takes her a moment to connect
my place in her room
with my place in her life.
I know she is in there.
She looked in my eyes; I let her love me.
Mom was back,
but not for long.
The touch of your hand—unnerving,
unbounded by time.
At Mirror Lake in Eden Park
the air had cleared,
the colors of sunset filled the western sky.
Tiny blue gills swirled alone in lazy Van Gogh circles.
Heads together, giggling like conspirators
and wishing for more.
I am still comforted by your touch.
Moments—come and gone—
that would not have been
had we not been present.
Engulfing moments unborn, unknown by us.
A salve to put on the wounds part—
the baggage of the day
and my beat-up body,
the parts that broke,
under the pressure of loneliness.
I breathe deep until the next time;
I sink into the car
and think about doing it again tomorrow.
The contrast—the leaving,
the spent memories so different,
so contrary, so final.
Or maybe not final,
maybe this too will change.
I hold her strength, yet I cannot find her.
The joy we had, the hope
and promise of things to come.
I want to believe.
I cling to these prayerful words:
Relax, you are safe.
I will be here for you—not forever,
but for as long as I can.

From participants in Writing Our Lives as Caregivers
with Pauletta Hansel, Cincinnati Poet Laureate, and Annette Januzzi Wick
Alzheimer’s Association of Greater Cincinnati

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What Is a Weekend…At a Memory Care Home?

IMG_2461I missed the Luau Party date on Arden Courts’ activities calendar. So, I was surprised when at Mom’s on a Tuesday to find a luau was to occur later, complete with sweet and sour meatballs, tiki cups, hula dancing and steel drums. Sadly, I could not partake. I wished Arden would have hosted the event on a Saturday or Sunday, despite the fact I had been inconsistent in my attendance on weekends.

Arden Courts was not responsible for my social life. I handled that fairly well. But they were responsible for Mom’s, and by proxy, that meant me too.

I prided myself in my near-perfect attendance for major events that occurred at Arden Courts. With a flexible schedule and even more flexible husband, I have attended Teddy Bear teas, senior proms, Valentine’s Day dances, chili cook-offs (a risky proposition) and Catholic holiday masses.

My schedule with Mom was somewhat regular, somewhat not, and somewhat dependent on the weather. I charted my time based on if I could urge her outside or not, and how long one of us could withstand the stinky heat. Then, when winter blew in, as if Mom’s disposition was not already thrown into disarray, doors locked and Mom and I were stuck staring at a sun that clearly quit its job in December, January and February.

When Mom first moved to Arden Courts, I diligently attended to her every other day. On weekends, I dropped in twice – most weekends were only two days long. Thus, I had tried out all the activities. I actually watched Cleveland Browns-Cincinnati Bengals football games, complete with popcorn, in the community room with Mom because it was less painful than to view the game with my husband and son, and their pithy Cleveland jokes running in the background.

Family members and friends struggled with ways to stay engaged with loved ones, but I didn’t. I loved singing with the Merry Moores because of their corny humor. I loved Chaplain Geoff and his booming voice. I relished in Friday mornings, because the activity was like Jazzercise, only from the seated position. I called it a Dance Party, but Arden Courts called it exercise. Mom never, NEVER, moved an inch if she didn’t want to, so swinging to Jerry Lee Lewis, just to get her heart rate up, was not going to happen. Still, I was there.

Later, I started missing days on the weekend. Then, I skipped a full weekend, but showed up Monday, Tuesday, Wednesday, out of guilt, obligation and the fact that I had missed out on activities like the luau or race car simulations or Irish dancing.

And I told myself, “Its OK. You’re working too.” I secretly confessed my sins to my rearview mirror, instead of waiting for the priest to arrive at Catholic mass at Arden.

I missed one Mother’s Day. Possibly Easter. A Fourth of July (read more about why that date was important). One Christmas Eve (Try taking out an 80 something-year-old in southern Ohio sleet and see if your loved one speaks to you again.)

Mom didn’t know one day from the next. She didn’t know if she missed hula-hoop class, for which she might be thankful. Or if she skipped communion, which the Eucharist tended to stick in her throat since she had been prescribed a soft mechanical diet.

But I knew. And I knew Mom had never missed a track meet of mine. She postponed cancer treatments to travel to Oregon when Davis was born. Mom gave up weeks to help during my first husband’s cancer diagnosis and in my next days as single mother.

She had a long record of showing up. “Wherever there was the need,” she said. That included toting six-dozen, neatly-boxed Italian cookies to Cincinnati for my first wedding reception, and a repeat of that Herculean effort for reception number two. She knew how to show up. And she filled that space with who she was.

These days, Mom and I have to get creative in how we filled time. Her hourglass rotated unceasingly, as if before the sands of time ran out, the glass automatically flipped when neither of us were looking.

download-2In those moments, time became seamless and nearly weightless, as a scene from Downton Abbey with Violet Crawley, Dowager Countess of Grantham, played in my mind, complete with British accent.

At the dinner table, Matthew Crawley is speaking about a job.

His father-in-law, Robert Crawley, Earl of Grantham, is incredulous. “You do know I mean to involve you in the running of the estate?”

“There are plenty of hours in the day,” Matthew responds. “And of course, I’ll have the weekend.”

The acerbic Viola interjects. “What…is a weekend?”

It was hard to lose hours with Mom, who couldn’t comprehend the dimensions of her space and time. But the sands of time kept rotating, and it was only silly humans who attached actual schedules to our time to love.

It was a Friday. It had been three days since my last visit. Mom was seated outside, in the shade. I tugged at her sleeve and kissed her on the cheek. “Hi, beautiful.”

FullSizeRender (33)Mom shot daggers at me with her hazel eyes, as if accusing me of skipping church on Sunday and daring me to produce a church bulletin with the current date.

Maybe she still knows what is a weekend after all.

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“Baby, You’re a Firework”

(https://findyouinthesun.com/2017/07/06/baby-youre-a-firework)

 

IMG_1680“I’m taking Mom on picnic.” I said to my husband, Mark, who wiped his eyes and blinked at the clock.

It was six a.m. on the Fourth of July.

“But I need your help,” I pleaded to him, plagued by a duty I couldn’t shirk.

Mark mumbled and rolled over until our fluffy dog whacked his tail around in his crate.

I had stopped escorting my mother out of her care home. On a previous escapade, our antics resembled an Abbott and Costello routine as I revolved Mom’s body into a seated position in the car. Our arms in a tangle, I held her at the waist while lifting her leg into the seat well. Mom stared at me with her watery eyes graying around the edges like the soft hair around her temples then fought back with her typical line of questioning. What car? This car? Why way? This way? Which way is this? 

Now, with my husband, Mark, and our daughter, Shannon, I drove Mom from her care home to a nearby community park. Like a tugboat, Mark and I escorted Mom out of the car and along a cracked asphalt path toward a picnic shelter with a roof drooping along the shady side. We were the only park guests other than a teenager who clutched a bulky picnic basket waiting for a dining companion.

As we approached the lineup of picnic tables, I harkened back to my mother’s Fourth of July cookouts.

When my mother insisted on eating outside no matter the humidity, we groaned. Soon, Aunt Joan arrived with baked beans and my siblings and I groaned again. Mom would grill my father about his barbecuing techniques, which always resulted in an added charcoal flavor to the meats and additional wait time. The kids were excused from a table blanketed in gold-checked cloths and instructed to play until called.

Mom’s meals always populated an extra picnic table with a buffet large enough to feed a team of twelve-year-olds. She topped off the spread with traditional angel food cake, frosted with Cool Whip and dotted with blueberries and strawberries to honor the stars and stripes—and her marriage.

Yes, my parent’s wedding anniversary fell on the Fourth of July. Legend had it, my father’s family shoe store closed during the holiday which made the date perfect for a marriage ceremony. As a youngster, I never recognized the Fourth of July as a special day for my parents. Their anniversary was overshadowed by the country’s birthday, neighborhood bike parades, never-ending softball games, and Italian sausage with fennel seeds cooked to a crisp.

As they aged, my parents celebrated by driving the winding road along Lake Erie to buy an ice cream cone at Toft’s Parlor. My mother loved to park with the car’s nose pointed toward the lake. Though Mom couldn’t swim, she was soothed by the endless waves of blue.

Before we sat down to our meager picnic, Shannon wiped the morning dew off the table with disposable wipes from Mom’s supplies. The air was now scented with baby powder and not fresh-cut grass. We unpacked slices of cucumbers, bags of Bing cherries and chocolate chip cookies, and Mom’s cherished peanut butter and jelly sandwich.

Mom singled out the chocolate-chip cookie first, and by habit, picked at whatever food item I deposited on my plate.

I regaled Shannon and Mark with stories about my hometown’s International Festival and parade where my siblings and I ate pierogies, baklava, and stromboli, all in the course of an hour. One year, my older sister, Laura, was crowned Italian Princess, and soon after, Ms. Congeniality.

Mark chewed through his allotted cookie. “How come you didn’t enter?”

I narrowed my gaze. “Who wants to compete with Miss Congeniality?” Besides, I was as far from a princess as any DC Comic character.

Mom nodded along as she consumed her second cookie and crushed the last cherry in her mouth. Her chin, splotched with cherry stain, dropped near the edge of the table and her elbows slipped off the glossy wood paint.

It was time to go.

We reversed course and returned Mom to her nest.

FullSizeRenderSettling her into an armchair with a tufted cushion in a warm corner in the sunroom, I tried to leave. But tears kept me rooted as if they were essential to watering my family tree.

Mom and I had been conjoined for five years. Five years without Dad. She and I had grown together in the way a married couple grew together except I returned to the outside world and she remained in her inner one.

I could finish Mom’s sentences by tone and not knowledge. If we were seated outside within the vicinity of the bird feeder, and dozens of wings flapped around us, Mom pointed to the birds and her voice rose. “Well, on there is something.” I would confirm there was not one, but three cardinals, and noted the addition of a yellow finch.

Mom relished in the lack of activity and stroked my arm. She embraced the summer days not for the rays but because she could touch skin. She slid her fingers up and down my legs, an act which might appear odd to an outsider. But Mom was only admiring the brown skin of her youth.

In five years’ time, I had loved my parents differently. Mom was alive and her breath lived in me. But there was some inexplicable tie that had nothing to do with mothering or daughtering because neither of us had accomplished much in those roles our last five years together, though we hadn’t lacked in trying.

I disengaged my fingers from the ageless beauty in front of me. But Mom grasped my tan arms as if she could feel the warm kisses the sun once planted on my skin.

I straightened up and cradled Mom’s head as she leaned into my soft tank dress and again wove her fingers through mine. My husband and daughter stood behind me and waited a while. I didn’t care. Mom and I had shuffled along too many corridors together for me to rush our goodbyes.

In a flash, I became a conduit for a presence I could not name. The Fourth of July burst through me and filled the moment with fireworks neither Mom nor I could see. But we felt them.

Yeah, we felt them.

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Her Superhero Power

(https://findyouinthesun.com/2017/06/14/her-superhero-power)

 

IMG_1220“Jeannie’s got strong hands,” Randy said. He glanced at my mother’s unshakeable clamp on my wrist while she and I strolled the halls of Arden Courts. Randy was the son of another resident who lived in the same memory care home.

“One day, I helped her outside because she kept pushin’ on the door. She had an amazing grip on my hands.” Randy grinned while he gazed at his fingers and turned over his palms.

I too gawked at Randy’s hands. They were sturdy. They had been built for football.

My Italian mother’s hands had been built for something else.

“I know what you mean.” I cringed and disengaged my twisted fingers from Mom’s hands. “Her hands are her superhero power.”

My mother’s hands had always held my imagination sway. She was a magician with her biscotti and nutroll as her fingers flew across the mixing bowl or dough to cut and roll or press and dust. Mom demonstrated a sleight of hand on par with Houdini in turning flour, sugar, and egg into memories I could not live without.

Her fingers were longer than mine. I verified that fact on numerous occasions. And often, I used that excuse when my pastas and pastries didn’t measure up to hers. In truth, Mom spent a lifetime perfecting her feats, thus qualifying them as superhuman.

My mother’s superhero power did not mean she could close off a teenage mouth with a force field. She was not a shapeshifter unless you counted her six pregnancies. Nor did she move at great speeds unless she was caught in the rain after her hair appointment.

No, Mom’s superhero power had always been in her hands.

When she spanked us, or worse, wielded the wooden spoon. When she circled mistakes on our homework. When she hemmed or altered suit pants or communion dresses. When she sprinkled water and ironed over my father’s work shirts. When she dusted or mopped or rubbed Pledge on her coffee tables to shine the furniture. When she neatly penned the names of every person on her Christmas card list— and it was a long list.

And, given her ancestry, when she spoke or sang.

Long ago, Mom instituted “the death grip” as we orbited the corridors of her care home. She owned a walker, and following a fall or seizure, her therapist often put that walker into practice. Mom no sooner wheeled it front of her, wandered off, and clapped a hand on to the nearest set of arms or the handles of someone else’s wheelchair as a counterbalance to her toddling self.

IMG_0580“Good luck with her hands,” Randy joked as we all parted ways.

I lowered Mom onto a green wrought iron bench and plopped down at her side.

She reached for my hand, rubbed the soft hairs on my arm, and refused to release me to the outside world.

All of Mom’s actions were tied up in her hands. When she avoided the mumbling resident by pushing her away. When she squeezed my hand while I combed her hair because squeezing was her means of communicating frustration. When she pinched at clothes dotted with sequins or cookies spritzed with colored sugar.

Even my mother’s baby doll was not free of her grasp. I often sought out Baby Doll to replace my hands when my fingers cramped from Mom’s crush.

For countless years, Mom used her hands to change the world through baking Italian Christmas cookies and caressing the faces of grandchildren. She held on to those she loved as life tossed her around few curves and now, she clutched the hands of those who cared for her or could maneuver her in and out of the sun’s rays.

When Mom finally lets go, she will liberate what she has prized for many decades—her power to hold on to whatever life has thrown at her, including a sometimes intransigent daughter, and still cling to love.

 

 

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Still Life

Carolina Marches

My life with Mom was not always about Mom’s life.

The day after Memorial Day, she and I strolled outdoors while she was arguably distraught with the landscapers who had left a mess of mulch spread across the sidewalk while sprucing up the garden beds of Arden Courts.

She simultaneously scowled at the young men, while also brandishing her trademark, I’m so sweet, smile.

Then, her eyes locked in on the benches. She marched straight for one in the sun and sat down.

In a little while, Jack wheeled outside to join us. Jack was younger than Mom, was afflicted with Parkinson’s, but recalled Mom’s name and remembered I was her daughter.

We filled our minutes with talk about what constituted the perfect summer day, and also, how to be on the lookout for sunburn. He told a story about his mother, seated on boat for eight hours, who never once considered she might have needed sunscreen and, only later, screeched at the mere touch of her arm.

The activities director joined us, and produced earphones and iShuffles for both Jack and Mom. The implements were part of the Music and Memory program recently instituted at Arden Courts. Mom’s playlist was crammed full of Sinatra, while Jack’s contained Simon and Garfunkel, and there the age difference was apparent.

After the director departed, Jack realized his iShuffle wasn’t working, so he struck up a conversation with me again. Mom’s headphones had been connected to my iPhone, so I let her mind spin on to the tunes on my player while Jack and I conversed.

I must admit to the difficulty of sitting with someone with Parkinson’s. While Jack stumbled over his words, I wanted to jump in and finish his sentence, despite knowing that was wrong, and also frustrating for him. Numerous times, I held back, held my breath and waited for just the right word to come from his mouth and not mine.

FullSizeRender-102The sun’s intensity that morning had been too much for all to bear. I escorted Mom inside to the join the resident cat, and Jack came along, courtesy of the activities director.

As I tried to part ways with both Mom and Jack, Jack asked if I could stay a few more minutes. He had something he wanted to show me. I was already late and promised to track him down when I returned. In hindsight….there was always hindsight.

Jack had been an avid photographer when he was younger and less afflicted. Of all the reasons he offered for his passion, the last two stanzas of the poem stayed with me. Now, Jack and I were forever linked by art.

 

Still Life

He once shot photographs
of marshes in the Carolinas
– before the shaking
and stuttering –
when his hands were steady
and he could capture a still life
instead of leading one.

We are outside
on a sky blue day
breeze whispering in our ears
and the wheels of his chair
roll backwards
into a bed of irises
where the tires are stuck
in a triangular rut.

He asks, Please, help,
and for an instant
his life is immobile
caught in that moment
between harsh cold concrete
and soft landscape green.

Later, I show him a book,
The Art of Ages,
a photographic journey
in black and white
through the 20th century
of people and how they lived,
sometimes in filth,
sometimes in stealth.

I only photograph still life,
he repeats.

He wants his camera back,
won’t mess with a new, old Polaroid,
and wants his computer too.
Maybe his brother will bring it,
but not his son
who he sees every six months.

He wants to know
if I have photos of my mother
when she was younger,
as Mom’s head bobs into her chest
and she snores away
the perfect silence of a summer day.

Some, I tell him. I have some.

I keep mine altogether.
The words sputter from his mouth
as he pushes off toes
and his chair rolls
backwards in time.

I take photographs,
he stammers,
because I get to keep
the life I lived.

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The Rear Window Revisited

FullSizeRenderSometimes, the window is open a crack.

The neighbor, herein the observer, has lived there for five years, or at least, a Bengals and a Reds flag have been flying as long as such.

Glancing up at that window, one is reminded of The Rear Window, where the lead character, played by James Stewart, is wheelchair bound and spends his days looking out the glass panes, suspecting he has witnessed a murder.

Rear_Window_film_posterNothing nefarious happens at Mom’s home of Arden Courts, but there is a life worth watching from above, difficult to define, and best framed by the casement of a second-story window.

That window is one of two windows and they comprise of the only set of panes that lords over the bushy gardens and sparse courtyards contained within white fencing all four seasons of the year.

During fall, many maple and magnolia leaves will have floated through the air, such that the observer would have heard my mother cuss at the crisps and twigs that flutter to the ground and swirl around her feet, causing confusion and also, because of the nature of her perfection, some consternation too.

The winter watch would be particularly solitary, and possibly painful. All alone, the observer would be seated and studying from above, with no signs of life inside the white perimeter, other than the occasional caregiver slipping outside to catch a breath of fresh air or speak quickly on the phone, or the maintenance man undertaking another of his never-ending projects.

The doors are locked from the inside, and no resident slips through those doors lest they slip on the ice and snow and whatever the deluge of rains bring. The winter watch must certainly be a lonely one, where the observer can only contemplate the life inside Arden based on the plethora of switches whose lights flicker on and off through the windows. The observer would know the rooms that were occupied and thus, whose life is still illuminated, whose life has been turned off.

And there were many lives turned off this past winter, many more than in recent past. Did the observer feel my grief for those hardly known, because of the cumulative nature of the deaths, the open-spaced silences and picture boxes next to their door and empty name plates that were left behind? As if sometimes, the number of loved ones left to carry in the external energy, to bring in the fresh pop of People magazines or Busken tea cookies from outside the secure doors were also in decline.

Should the observer examine the course of activities from above, surely spring is the best of times, when the sun blossoms and the irises shine. And slowly, one lone woman emerges, cradling in her arms a small pet bed with a worn stuffed animal. Then, a diminutive man, cheeks sunken in, but still traipsing, still traipsing.

From above, there might be only two residents spotted all day. It is like watching for the rare birds, the colorful ones whose broken legs and hips and wings can still maneuver, but their minds cannot. And to listen for them too, for the rare speech the species might make, marveling at a hue of blue that they don’t remember ever witnessing, only because it was months ago when that blue could have shimmered so bright.

But the doors lock and unlock on the whims of Mother Nature during spring. And in past months, the observer would attest to even seeing Mom pushing at the locked doors, waiting for Spring to say yes, its time to let her back out into the real world. When the doors refuse to budge, Mom stands in the skylights anyhow, feeling the warmth with her hands pressed up against the glass.

And the observer would silently wish for the portals to be unlocked, pleading the maintenance or staff to open the doors. Let today be the day.

As recent temperatures climb, the Black-eyed Susans will soon spread their swath of happiness across an entire patch of garden and welcome summer with all its glory. And that’s when the observer would have counted more rare sightings.

IMG_0857On this day, the observer would have seen Mom and I walk “all the way around” and “all the way back”, less than three-tenths of a mile. But as Mom ages, it’s the movement of her feet the observer counts, and not the number of feet in her movement.

The observer would have also seen Mom with her Dr. “J” beats on, her head nodding to the noise thrumming through her soul. The noise which could only be Sinatra, or she would rather remove the headphones instead.

But this day is difficult, as one favorite resident, “Elaine”, has let go. And observer would also attest, so many lives let go over winter.

 

“to live in this world

you must be able

to do three things

to love what is mortal;

to hold it

against your bones knowing

your own life depends on it;

and, when the time comes to let it go,

to let it go”

― Mary Oliver, New and Selected Poems, Vol. 1

Lovingly, the observer would have noted how the husband tended to his wife’s every need, fed her meals, sometimes twice a day. And the husband made countless jokes with Mom.

“Wow, I didn’t think it would be this hard,” the observer would have heard the husband utter as “Elaine” entered her final stages.

And the observer would have also been privy to the conversation followed.

Mom and I are seated outside, on a heavenly blue day. Tears stream down my face.

My mother looks at me with her trademark furrowed brow.

“Mom, I have a friend who is dying.”

“Oh, well, I think that’s okay.” She pats my knee and smiles.

The neighbor, who could gaze out over the courtyard on any given day and see life, envision a snapshot of the residents’ life to come, would have said the same thing.

For the observer is uniquely positioned to see all that transpires, all the heartache and challenges of loving someone with dementia, of escorting someone on the journey to their death. Absorb all the self-recrimination and self-examination that fight for space inside the heads of loved ones. Check all the movements of the chess pieces that make up this life inside the perimeter of the fenced-in chessboard.

Perhaps the observer, the knower of all things, knew before anyone else that it was “Elaine’s” time.

Did the observer weep, as I did, when Elaine died?

When I am not with Mom, and she is outside, sometimes munching on flowers, or attempting to eat a rock, does the observer understand this too? And creating a crevice between window and sill, does the observer applaud at the music of Mom, a rare songbird, and implore her, silently, to sing on?

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When Did I Become a Caregiver?

 

Mom often reaches for my hands and arms, when she is cold, when she needs warmth.

That day, like many others, I was entangled in her embrace.

A question someone posed earlier floated still in my head, during the noisy, silent time of Mother’s Day tea.

When did you know you were a caregiver?

After five years with Mom, I should know the answer to that question.

But does the origin go back even further? For me, it did because of my first husband. But had that just been who I always was, a part of who I am, or was it a part of who I was becoming?

Mom only released my arms and hands when an older woman came around and waved a plate of brownies beneath Mom’s nose.

“No, thank you. We don’t need the peanuts,” I spoke up for two, shaking some blood back into my upper extremities after Mom’s grasp.

The woman, a member of the Delta Psi sorority that arrived every year to freshen the tables with linens and teapots, pleaded with her eyes for me to take one, at least one.

“OK, I’ll take a piece and just lop off the peanuts before giving it to Mom. She has swallowing issues,” I said, to sum it up nicely and not go into any lengthy discussions on digestion.

We, er, Mom, was on the fifth course of dessert, after four courses of finger sandwiches made from ham and cheese, cream cheese and zucchini bread, pimento cheese, and egg salad. We had eaten Madelines, strawberry cakes, butter cream cupcakes, and wafer that was basically carmelized brown sugar over graham crackers, something someone might bring to a campfire, and tasted equally as devilish.

I hated being the gatekeeper to Mom’s stomach, but her caregivers, the REAL ones, would have to deal with the consequences later, and since I would be out of town for a week, I’d rather not have them dissing me under their breath while I was away.

But those caregivers? They were the real partners in the scheme of caregiving, so why even ask myself the question, When did I become a caregiver? Mom was in their company twenty-two-and-a-half hours of the day, and me, all of ninety minutes.

In an earlier post, I noted my parents had named me Health Care POA. To be honest, the designation was by default as much as anything else. I was not privy to the conversations my parents might have had, or knowing them, not had, because what Italian didn’t just sweep everything under the rug or bury it beneath the tomato vines?

What then, in my makeup, brought me to the edge of this vocation time and time again?

Was it the flexibility I had in my work? Was it the fact that I must have done such a stellar job with Devin, read irony, that I became the obvious choice?

When did I even know or think of myself as caregiver for Devin?

During Devin’s bone marrow transplant in Seattle, as part of his admission, one person was to be the designated caregiver, like the designated hitter, schedule to come in off the bench, anytime, when bats were hot or cold, to pinch hit or to make a difference in the game, when the team needed a bunt or a homerun. That was me.

But before that, most people who knew me wouldn’t say I was the warmest and fuzziest person to be around. I could be rather direct, I didn’t make chocolate chip cookies for every new neighbor, only pizzelles for my favorite ones, and considering myself twenty years ago, I didn’t know how to ask for what I wanted.

And that was my first lesson in caregiving. My first lesson in what was required to be a caregiver was to become a demanding, bitchy woman who accompanied Devin to all his treatments, and went in search of a nurse the second the IV pump began beeping, or that he needed water. The list was as endless as the beeping.

But the truth is, anyone of us at anytime could be called to be a caregiver. Look at me. You don’t have to do it well. Or with a lot of enthusiasm on the days when you can’t muster happy, happy, because of menopause, or your mother twists your arms so much you think she might break it.

But you would do it. You would show up, because you can’t imagine not showing up. Because your mom took care of your kid when you took care of your husband, and isn’t that the least, maybe the very best, you can do? He might even be a better kid because he was raised by grandparents for a while, with a little more soda and chocolate than you might have liked, but hey, he was your first, you would have caught on.

So, when did I know I was a caregiver? It wasn’t because my father put my name on a few documents. He could have done that with any of my siblings. I doubt it was because I had always told Dad I would take care of Mom. I doubt it was because of my time with Devin, because by most outer appearances my actions might have appeared heroic, but those instances were difficult, and there were days when I had to admit to the harsh reality of letting go of someone I loved.

Maybe it was because of my time with Devin.

Perhaps that’s what defines a caregiver. That I will say, “no,” to endless rounds of testing, or raising Mom in and out of gurneys on ER runs, or playing keep away from countless needle pricks in her arm. That I will know how to let go.

The ultimate requirement of being a caregiver is knowing when your charge no longer needs your care. That’s when you become a caregiver.

I whispered in Mom’s ear. “I’ve got to go, Mom,” I had an Engagement/Derby party to attend and was already late.

“You have to go?” Mom repeated after me, like a little pappagallo. She was still mesmerized by the music and what might be crumbs left on her plate from the brownies, wondering if she ate them all, or if there were more treats, or what exactly she was doing there in that room with ladies wearing wide-brimmed hats, and who was the person who had just called her Mom.

A pui tarde,” we exchanged in Italian, back and forth several times.

“Love you, Mom.” I held my arms around her shoulders for a long while.

She grabbed a hold. “Love you too, honey.”

And then I slipped away.

 

 

 

 

 

 

 

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Swipe Left and Right

IMG_0446I swiped left and right between the photos.

No, this was not on Tinder. This was in real life. Mine and hers.

Mood swings were at the top of my most despised moments with Mom. I didn’t hate my mother in that moment. I hated myself because I’ve yet to learn how to adjust to her fluctuations.

But in between those moments, was everything that was life and death.

When Mom was cranky or ornery, my first reaction was always UTI. Bladder infections were common occurrences in individuals experiencing dementia. The infections created moderate to severe changes in disposition. Thus, when Mom’s mood swerved and curved like an Indy race car driver, my first thought was UTI.

True confession. My very first thought is Mom is dehydrated. Then, UTI. And because a UTI left undiagnosed for too long could lead to complications, panic sets in. I track down the nurse, or a caregiver informs me the staff has already told the nurse. Then, we wait on a person whose incontinent. It’s really not an exciting time. One of the caregivers will take Mom to the toilet and turn on the running water, to encourage output, so to speak.

My mother would be horrified if she knew I wrote about and shared those challenges. But, I reasoned, she and Dad could have named any of their children POA. They chose the writer.

Back over Easter, I was leading Mom to the Easter egg hunt when we encountered the Easter Bunny. The bunny stopped long enough to hug Mom, but didn’t speak. Did the Easter bunny ever speak? Mom should have at least recalled that, I presumed. But alas, some memories did not cross the span of time and neurons.

The Easter Bunny’s muteness was NOT acceptable to Mom. Several times she yelled out, “C’mon. C’mon.”

Anyone could read those words on her lips, and in between the lines of her furrowed brow.

Eventually, the Easter Bunny disengaged its fingers from Mom’s, while I slid my fingers into the crusher’s hands. We traipsed down the hallway towards Easter Brunch.

The brunch passed without incident, mainly because I maintained strict oversight in allowing Mom access to the orange juice and extra chocolates. Confined to a corner near the window because of our tardiness and Mom’s desire for light, Mom spent much of her time watching the youngsters anxiously waiting for the hunt to start. One little guy told us all about being in second grade while boasting of towering over my five-foot frame. Mom muddled through with the occasional angry outburst because she couldn’t follow all the conversations.

When a seat opened up in the main room, I guided Mom to an open table where she had a better view of the children processing in and out, and out and in. Then, I grabbed the bunny ears and ladybug antennae and fiddled with each, placing one on Mom’s head (this is where I apologize to Mom), and one on my own head (this is where I apologize to my children).

And Mom lips parted, first in a slight grin, then like the Red Sea, ready to swallow up all the jellybeans and life before her. In the span of a half hour, she was content again.

I lived a thousand lives in between a good moment and a bad. Her voice, when at optimal yelling capacity, reminded me of days she didn’t separate far from her rubber spatula when discipline was needed.

Copy of DSCN1093 - softHer voice, when saying hello to new faces sprinkled with sunshine, rang through to my heart, resounding of ten days spent in Italy, when I took my parents twelve years ago. I had never seen my mother more radiant than in those moments in the square in Siena, mangiare al fresco, called out by a carabaniere, or holding court tableside with a carafe of vino della casa in Fiesole, above Firenze, with her Italian-American daughters at her beck and call.

In celebrating Eastertime with Mom, I experienced the rising and dying and rising again of Mom to beat another infection or crush a daughter’s disposition.

Lately, at Mom’s care home, several residents had died due to falls or the natural cycle. Despite having spent countless hours in this setting, I never knew how often one could contemplate the shaky nature of our existence.

We are all one fall away from the precipice, or one flight away from opening the skies. We are one moment away from sheer joy or complete madness.

I swiped left and right, and prayed we wouldn’t have to do this again until Santa Claus arrived AND that Mom would here to scold him too.

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Ode to the Human Body

I let out a small yelp. “Mom!”

With the door wide-open, Mom had lifted her shirt over her head, removed the soiled piece of clothing from her arms and was promptly folding it. I hurried to shut the door, consciousness of my mother’s nakedness.

Fifteen minutes earlier, Mom had an accident. Well, not really. What I called accidents were really just incidences of Mom’s body doing what it was supposed to be doing, or not doing what it was supposed to be doing and Mom’s mind not knowing the difference.

A caregiver had gone to great lengths to cleanse Mom from the waist down. But as Mom and I strolled outside, I noted Mom’s pima cotton top needed changing too, so I had piloted her back inside where Mom promptly dropped down on the bed with a sigh of relief. She had been on a forced march out in the sunshine, only to be goaded back to her room by me. FullSizeRender-82

Now, I stood and observed Mom’s body.

I didn’t often see much of it anymore, as caregivers were tasked with many of those duties. Occasionally, when we went out, or I brought Mom to my house, I risked having to change Mom while she yelled at me.

Sometimes, I removed Mom’s socks so her feet could breathe in the fresh air. Or, I’d roll up her pants so that her calves, still bulbous after years of stooping to dust and pray, were exposed to the noonday sun.

While I disdained the same scrutiny of my own body, I found Mom’s fascinating. Her body revealed her history of lives birthed and lost, of legs that traveled once to Italy, but mostly up and down stairs. Her feet had worn only the most stylish of pumps, thanks to Januzzi’s Shoes, but were relegated to hefty athletic wear.

As I opened the neck of the shirt to lower over her head, I studied the flat terrain of the right side of her chest, sporting a lightening bolt scar where once was a breast. After cancer came knocking, Mom had politely, though resolutely, declined.

Below me, Mom’s legs, with those short, taut thighs, had been sculpted by years of kneelers and steps that also kept her heart in shape.

Her belly was bloated, not from lunch of turkey wraps, but by children she birthed and the tears she might still cry for the one she gave back. Down the middle of her womb, she carried another line – a stretch mark of stitches from when she was torn open to remove body parts no longer needed. I spent an eternal night with Mom in the hospital, knowing she would yank at tubes, the doctors waiting until swelling in her belly decreased enough to scan and operate. How afraid was she? How afraid was I?

Her hand carried bruises. The discolorations were common now. Not because of abuse, but Mom processed up and down hallways, attempting to break in to locked doors. The discolorations were a result of her attempts, or shall I write, insistence.

She thread her arms through the shirt and looked up at me with eyes she once claimed on her driver’s license as brown, brown as the dirt of her ancestor’s home. Her eyes turned hazel over the ages, like a clear creek turning with algae. Now, the two o’clock rays sliced through her window, illuminating eyes of green, like the lushness of a meadow where she as a child might have run and played.

My mother was the poster-girl for modesty. I owned more photos of her hiding from a camera than smiling in the lens of one.

I had no sooner straightened the shirt to her waist and Mom stood up and toddled out of the room. I watched her go, as she used her muscle memory and headed back outside pushing on the arm of the door, that time not locked.

IMG_9778She found the first open chair outside, plopped down and fell into slumber.

I had been absent for a few days, during which, the nurse had phoned to inform me Mom was diagnosed with two strains of UTI. Following that phone call, I was anxious to discover what condition I would find Mom in – sleepy, grumpy, sneezy, bashful.

After the march in and out, Mom’s struggle to change the shirt, and her return to the sun, I was happy to report her body was in the state it was supposed to be in.

The human condition.

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A Long Way to Tipperary

She rested her head on my shoulder like a child in need of a good read. We hummed along to Irish tunes floating through the halls.

It’s a long way, to Tipperary.” “Tipperary,” she sung back.”

I flipped through the pages of a worn Redbook magazine, Mom occasionally reading whatever words were in large print. When I landed in the Food section, a few colorful dinners caught her eye. Tagliatelle with Peas. Sicilian Pasta.

She read each headline, and I read the recipe below it.

“Oh my, that sounds a bit tart for me.” “Too salty.” My comments, not hers.

Instead, Mom took a page between finger and thumb, and tore one page then the next from the binding.

“Its just like we’re at the hair salon, Mom. Ripping apart these magazines.”

She burst into giggles. “Yeah.”

Then Mom handed the tattered sheets to me – was she expecting me to cook dinner? – and sang, “Tipperary.”

And together, we crooned, “But my heart lies there.”

It was a joy-filled exchange after a long day.

I had spent the morning and part of the afternoon at Refresh Your Soul, an Alzheimer’s and dementia care conference sponsored by Episcopal Retirement Services, listening with rapt attention to several inspirational speakers give rise to their own journeys.

I hadn’t planned to visit Mom afterwards. And yet, on those days, surprises emerged. If I arrived with cookies, expecting gratitude, or if I showed up with photos for her to view, my best laid plans, together with Mom and I, completely melted down. But in the rare instances for which I had no plan, were the brightest lights.

The conference had absorbed so much mental space, and offered me many writing prompts, that I preferred to be home. Oftentimes, I struggled with writing about Mom so she will live on in my memory versus sitting with her in the present while she is still alive. I decided on the latter.

After the conference ended, I drove a few miles up the highway to see Mom. As I exited the ramp, I careened around the curve, only to find an abandoned car on the side of the road with a familiar sticker on the bumper. Women Writing for a Change. My car sported one too.

I looked up ahead and spotted two forms walking along the burn. I rolled down my window. “Hey! Angela! What’s going on?” I was full of amazement that I actually knew one of the persons.

“Oh, I ran out of gas.” Angela looked at me like my appearance was the most natural event the world at that moment. Maybe she was a more fervent believer in Fate than I was.

“Well, hop in. I’ll take you and your son to the station.” The station was in view, and was technically only a half-mile away.

She introduced me to her son, and we sped off to the station. Her eighth-grade son and I waited for her to procure a gas can, having typical awkward conversations. Then, I drove she and her son as close to the car as I could come, given the access ramp. I steered back into the flow of traffic, remembering I hadn’t even planned to drive that stretch that day.

Paying attention to the small things, I was where I was supposed to be for the minute, the day, the month.

Back to Mom. I had found her sleeping in a kitchen chair. She always did gravitate to upright chairs. She found some comfort for her aching hips by sitting in proper posture.

She and I had walked for bit, listened to the Merry Moores Duo, and found ourselves navigating a number of magazines. Mom’s eyes grew wide as she perused the meal section of the Redbook periodical. She rarely ate meals that resembled gourmet. Much of her meal was pureed (soft mechanical), which still left some wiggle room for cookies. She’s never challenged in digesting cookies.

After we leafed through the Food section, and discussed our likes and dislikes for each dish, Mom laid her head on my shoulder again, as if she had consumed an entire meal and now prepared for sleep.

In actuality, late afternoon was Mom’s time of day to nap. Valerie, her evening shift caregiver once told me, “If I lay her down a little before dinner, then she gets through dinner, and has a nice comfortable evening.”

Sleep was coming on full-steam. So, I let her fall while my mind drifted back to the conference speaker.

John O’Leary, author of On Fire, posed a few questions to ask ourselves each day, and offered suggestions on how to reframe the answers given back to ourselves.

“Why me?” What about my life had offered the opportunity to care for Mom? And what blessing could I find in the day when given this opportunity?

John asked the audience to meditate on the question of gratitude while he sat to the play the piano. To understand what an accomplishment that was, one needs to know that John, as a nine-year-old, suffered third-degree burns over 100% of his body. Both his hands had been amputated. But his mother insisted he continue his piano lessons, for five more years.

John played “Memories” in the most hauntingly beautiful, but painstaking fashion. The audience closed their eyes and went quiet.

Participants were next prompted to answer “why me” and write to the gratitude that can be found in the disease of forgetting. What had come into one’s life, as a caregiver, that wouldn’t have come otherwise?

My tablemate generated a list of ten thoughts. Another young tablemate drew a blank, as tears continued to flow down her cheeks from the piano music. She was more a hearer than a talker or writer, she confessed.

I didn’t hesitate. And not because I was a writer.

I wrote furiously because I had been in the midst of experiencing Mom’s Renaissance, Part Two. Or Part One-Thousand. I had lost count how many of those she had. I turned giddy as she turned more giddy, and I became like Buddha with all sorts of wisdom to offer.

To witness the transformation of my mother from an older person with a disease into a human being. Not her actual transformation, but the one I am experiencing with my own eyes.

Mom fidgeted when she heard a loud noise in the hallway, breaking my trance.

“Mom,” I whispered to wake her up.

“Yes?” she whispered back in a game of telephone.

“I have to leave.”

“Okay, honey.” She took my chin in her hands and kissed me on the lips.

“Oh, you call everyone honey these days.” I shook my head.

“Yes, you’re right,” she confirmed without understanding my context, only hers.

“Ciao, bella,” I said, as last my goodbye, and we threw each other kisses with our hands.

Mom’s last months of 2016 had been hellish. My first months of the year, busy.

But she and I had settled back into our rhythms, though not necessarily as mother-daughter. And not always as caregiver-loved one.

We had simply become me and you.

It was a long way to Tipperary to the sweetest gal I know. And if our time together offered the opportunity to witness her transformation, surely her gift had been to witness mine.

 

 

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