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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

Maybe because it was the Fourth of July. Tears streamed down my face as I attempted to disengage from the ageless beauty in front of me. But Mom grasped my tan arms, as if she could feel the warmth that once emanated from off my skin.

IMG_1680Five days earlier, I had stopped to visit Mom, nagging her until she rose to walk outside and sit in the courtyard on a billowy summer day. I queued up all her music, cut and filed her nails and plucked a few chin hairs, at least the ones she would allow me to pluck, until she swatted my hands away. And, I watched the clock.

Tick. Tock.

My husband and I were traveling to Chicago to see Hamilton and attend a friend’s daughter’s wedding. The list of to-do’s back home couldn’t wait. I needed to finish the laundry before heading off to the FC Cincinnati vs. MLS Chicago Fire match that night. I didn’t want to be soaping and spinning past midnight.

So, I did the one thing I abhorred. I left Mom in a hurry, as if everything else in my life were more important than that moment.

Fast-forward to the Fourth of July.

“I want to take Mom on picnic,” I said to Mark. “But I need help.”

I had stopped taking her out as frequently as promised or used to when she was more lucid but would forget, but was as least lucid enough to understand. On a previous outing, our antics resembled an Abbott and Costello routine as I tried to revolve her body into a seated position once again. Our arms tangled as I held her at the waist while simultaneously lifting her leg into the seat well. “What car? This car? Why way? This way? Which way is this?” Valid point. Score one for Mom.

Mark, our daughter, Shannon, and I drove Mom out to nearby Champlain Park, a small Deer Park community park. Thanks to Shannon’s GPS guidance, she instructed us towards a separate entrance that would not require Mom to step over railroad tracks amidst mountains of gravel.

Mark and I tugged Mom up a cracked asphalt path to where we could sit beneath the picnic shelter. We were the only park guests for some time, other than the teenager holding a picnic basket, waiting impatiently for a girlfriend finally dropped off by a parent.

Approaching the long lines of picnic tables, I harkened back to my mother’s Fourth of July cookouts, where we lamented the presence of Aunt Joan’s baked beans, my mother’s insistence of eating outside no matter the humidity and her constant inquisition into my father’s grilling, uh, techniques. Mom had always spread the gold-checked cloth across freshly-painted tables and cooked enough to feed a team of twelve-year-olds. She had topped off the meal with her angel food cake and Cool Whip American flag, complete with blueberries and strawberries honoring the stars and stripes.

Mom and Dad’s wedding anniversary fell on the Fourth of July. Legend has it the shoe store was closed and the holiday made the fourth the perfect day for a marriage ceremony. As a youngster or teen, I had difficult recognizing the Fourth of July as a special holiday for them. Their anniversary was overshadowed by the country’s birthday, by neighborhood bike parades, long ball games and burnt Italian sausage, and by viewing of the Wimbledon matches, coupled with a few tennis matches with siblings.

Over the years, they celebrated in their own style, or probably just drove along the lake to get an ice cream cone at Toft’s Dairy Ice Cream Parlor. My mother loved to look at the lake. Though always afraid of immersing herself in the water because she couldn’t swim, she was certainly soothed by endless wave of blue.

Shannon wiped the table with the only tool at our disposal, 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 Mom’s cherished peanut butter and jelly sandwich. There was only one sandwich because I had run out of jam.

Mom successfully ate a peanut butter cookie first and picked at whatever food item was on my plate, which I had strategically planned for by pitting cherries in advance, splitting them in half and placing them on the side of my plate closest to Mom’s fingers.

I regaled Shannon and Mark with stories about Lorain’s International Festival and Parade. How we used to eat pierogies, baklava, stromboli, all in the course of an hour. One year, my oldest sister, Laura, had been named an Italian princess as part of the festival, and soon after, Ms. Congeniality.

“How come you didn’t enter?” Mark asked.

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

After consuming her second cookie and the last cherry, Mom’s head began to droop. She was bored. She nearly feel asleep on the picnic table as her chin dropped close to the edge and her elbows slipped off the glossy wood paint.

It was time to return Mom to her nest.

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

Mom and I had been together for five years. Five years without Dad. In that timespan, Mom and I had grown together in the way a married couple grew together, except that I returned to the outside world and she was left with her inner one.

I finished her sentences by tone and not knowledge. For instance, if we are seated outside, within the vicinity of the bird feeder, and there are dozens of wings flapping around, Mom indicates the bird in the feeder and her voice rises. “Well, on there is something.” “Yes, Mom, there’s the cardinal, there’s one, two, three chickadees (she likes that word), and a yellow finch.”

When Mom wants to sit in solitude, she strokes my arm. She embraces summer, not just for the rays, but because she can feel skin. She runs her fingers up and down my legs, which yes, it’s rather strange, until you know Mom is admiring the brown skin of her youth. We hug, and our cheeks rub up against one another and, after her shower and a few swaths of Oil of Olay, her skin is more supple than mine. Some days, she will reach for my arm and push the sleeve of a sweater or sweatshirt up to my elbow, so she can touch skin to skin.

In five year’s time, I was no more patient now than I had been then, but I was wiser. I took my cues from her. Oh how hard that was for a Januzzi woman to take her cue from another Januzzi woman.

While I had been in Chicago for the long weekend, I missed Mom terribly. It was odd the ways in which I loved my parents differently, and how I carried Mom in my heart. Because she was still alive, her life force still lived in me.

Dare I say, I felt something akin to marriage to this woman. But it was something more, some inexplicable tie that had nothing to do with relationships or mothering or daughtering. To be honest, neither of us had accomplished much in those roles our last five years, though we hadn’t lacked in trying.

I straightened up and cradled Mom’s head as she leaned into my soft tank dress and wove her fingers through mine. My husband waited behind me, my daughter in the car. I didn’t care. I wasn’t going to ruin this goodbye. We had shuffled along too many miles together for me to rush this time.

In that flash, I became a conduit for a presence I could only attribute to Dad, and the Fourth of July burst forth through me, filled with fireworks neither Mom nor I could see. But we felt them. Oh, yeah, we felt them.

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Her Superhero Power

IMG_1220“Jeannie’s got strong hands,” Randy said to me, as he watched Mom and observed her uncanny hold on my wrist as she and I strolled through the halls of Arden Courts. Randy was the son of another resident at Arden.

“One day, I helped her outside, she was pushing on the door, and she had an amazing grip on my hands.”

I looked at Randy’s hands. They were sturdy. Had probably been built for football. Ironically, he too had experienced Mom’s brute force.

“I know what you mean,” I cringed, helpless, as I attempted to disengage my twisted fingers from Mom’s hands. “Her hands are her superhero strength.”

Mom’s hands have always held my imagination sway. She was a magician with her cookies, as she cut and rolled and sprinkled and stirred. Mom demonstrated a sleight of hand on par with the Houdini in turning flour and sugar and egg into memories I cannot live without.

Her fingers are longer than mine. I know this fact because I’ve measured. And often, I’ve used that as an excuse for my cookies, ravioli and meatballs never measuring up to hers. In truth, she spent more time on her feats than I ever will, thus making them superhuman.

Mom’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 many 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 our mistakes on homework she checked. When she hemmed or altered pants or dresses. When she neatly penned the names of every person on her Christmas card list, and it was a long list. When she dusted or mopped or rubbed Pledge on her coffee tables to make them shine.

And, of course, when she talked or sang.

These days, Mom implements what I call “the death grip” as she holds on and we walk around the building, around the hallways. She should be utilizing a walker, which she owns. On several occasions, following a fall or seizure, the PT and I have tried to put walker practice in place, but Mom would no sooner wheel it front of her and then wonder off. Instead, she grabs the nearest set of hands, which can also be the handles of someone else’s wheelchair to that person’s detriment, to steady herself in the same way she would use a walker.

IMG_0580When Mom sits, she reaches for my hand, rubs the soft hairs on my arms and refuses to release me to the outside world. All of her actions are tied up in her hands – when she wants to avoid someone, when she wants to go a certain direction, when she is angry and squeezes my hands because that is her means of communication, when she sees something with sparkles or sugar.

Even her baby doll is not immune to this grasp. And quite honestly, I often go in search of Baby Doll to replace my own hands when my fingers ache from her crush.

For countless years, she used her hands to change the world through her baking and cooking, her coddling of grandchildren, through holding on to life’s curves and now, holding on to those who care for her, or for that matter, those who can help her in and out of the sun.

When Mom lets go of this life, I will know she’s ready, because she will liberate what she had held these many decades. That has been her super hero 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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