It’s Easy ‘Bein’ Cheesy’ At 88

IMG_7367Angela, one of Mom’s caregivers, spotted Mom and me in the hallway near the hair salon.

“Carol can do your mom’s hair now,” Angela said with excitement.

“Now?” I asked, just to be clear. Just to make certain she hadn’t mixed that up. Just to make certain she meant now, as in right as I was planning to leave.

I toddled into the salon with Mom holding my arm, following behind. Angela trailed in and helped to hoist Mom into the hairdresser’s chair.

“Here, Jean the Bean. You can have these to stay busy,” Angela said and handed my mother a half-eaten bag of Cheetos.

I stood with my mouth agape. Angela wasn’t serious, right? My mother had never eaten Cheetos. Never bought Cheetos. Never looked sideways at a bag of Cheetos.

But quickly, Mom snatched the bag from Angela’s hands and plucked a fat Cheeto from the crinkled bag.

Carol, the hairdresser, smiled and turned to prep her tools and potions.

I took a deep breath, ready to say goodbye.

I had already been visiting for close to two hours, having first attended meeting with the executive director of Mom’s dementia care home for an annual checkup. Mom, er, Arden Courts, had passed with flying colors.

Then, once I had located Mom wondering about in the kitchen, I suggested we walk and she headed directly for the courtyard door. I obliged and followed. Mom led me outside towards the plastic lounge chairs still dripping with drops from the morning’s deluge, which is right where she sat.

We listened to crickets Mom claimed she couldn’t hear. And counted the different species of trees in our view. “We” counted six. She fell asleep a few times with her head on my shoulder, and then I decided it was time for me to go.

When I escorted Mom back inside, Angela had flagged us down.

Now, with Mom settled in the chair, I made an attempt to leave. “Mom, you seem a little busy now, so I’ll just see you later.” I said, nodding at Carol, hoping she would join in the chorus.

A muffled munching sound came from my mother.

But Carol did not help me out. “Are you going to stay?” the hairdresser glanced at me and more or less stated.

If I stayed, then I had to sit and keep Mom calm or listen as she squirmed. “Oh, that’s cold,” she would incorrectly say, as Carol scrubbed Mom’s scalp. “No, don’t do that,” Mom would argue as Carol snipped away a few millimeters of Mom’s lily-white hair.

My shoulders fell. “Sure,” I replied.

I sat back down beneath the hair dryer, prepared for Mom to issue one of her glares or to witness one of her outbursts when she didn’t like what was happening. Instead, I watched as Mom devoured crisp orange tubes of fat she would have never bought at the grocery store.

Everyone who passed by disregarded Mom’s hair, instead, commenting on the Cheetos in Mom’s hands and in her mouth. Mom just smiled with lips that were now smeared with a color of orange Loreal had yet to invent.

“Oh, they all love Cheetos,” the nurse chuckled as Mom sifted through the last of the neon orange crumbs and licking her fingers.

I pictured my mother sneaking up behind unsuspecting residents, as Chester Cheetah might do, deftly lifting Cheetos from their bag of snacks.

“Oh sure, your mom eats Cheetos all the time,” the activities director claimed as she stopped to visit.

Incredulous, I thought. I had learned something new about my mother. But there was more.

Carol finished snipping Mom’s hair. “Do you want me to curl it?”

“No, I think she’s tired and she’ll just head to bed and then wind up with bedhead. Besides, it looks cute just like that.”

I pulled Mom out of the chair while she held a firm grasp on the Cheetos bag. As I thanked Carol, my mother ventured from the salon out into the hallway.

I breathed a sigh of relief. She and I could both relax now.

Mom was still gripping the flattened foil bag. When she turned to hand it to me, I noticed her nails contained bits of orange dust beneath them and then, it dawned on me.

On occasion, I had noticed how Mom’s fingertips appeared discolored, more towards the ochre family of colors and not flesh tones. The nails appeared stained to match the fingertips.

I always suspected Mom’s hands were not scrubbed well enough, or that she was eating her carrots or sweet potatoes with her fingers. But I should have asked myself, how many different orange side dishes could her care home possibly serve?

Finally, I had learned the origin of her dayglo orange fingers. I mentally made a list of all the reasons to “allow” Mom to eat Cheetos. 1. She liked them because they were crunchy, which her diet had been softened over time. 2. “Everyone” was eating them. 3. It’s never too late to change eating habits.

But the real reason had more to do with genetics.

“You liked those Cheetos, right Mom?”

“What’s that honey?”

“Cheetos,” I said and pointed again to the bag.

Mom glanced at the bag and wiped more orange flint from off her black pants. She said nothing as if waiting for a big reveal, thankfully, one she could no longer commit to memory.

“Here’s a secret, Mom,” I whispered. “I like Cheetos too.”

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Writing as Daughters, Healing as Writers

Pauletta Hansel and I sat as facilitators, at the front of the conference room in the Cincinnati’s offices of the Alzheimer’s Association, facing participants for a workshop titled, Writing Our Lives as Caregivers. Both of us were grown daughters of mothers experiencing dementia.

But Pauletta and I had first known each other from a different life. One grounded in writing. I was new to writing then. And new to an organization called Women Writing for (a) Change. I was also new to grief. And single motherhood. And the arts, as my previous training had originated from a technical background and multiple cancer floors.

But I needed something to sink my teeth (or pen into) and found how much I not only relished the writing process, but speaking and sharing with others about writing brought about healing for myself.

It was by some surprise then, that I found myself nominated for the board at WWfaC, with Pauletta at the helm. I was even more surprised that she nominated me as an “energetic volunteer of the arts”, profiled in the newspaper. I felt rewarded, not necessarily for something I did, but for something I felt.

Years later, she and I were grounded by our mothers. But we were still writers. In fact, Pauletta as the Poet Laureate of Cincinnati. And I, a blogger on the topic of dementia, with a few smaller publishing feats under my belt.

In recent years, our individual work had evolved. The work was from us, but not always about us. However, as we began plotting out our circle, Pauletta had suggested we use our own writing as prompts to move participants towards their inside words. I was surprised. I had never used any of my work as a model for others to emulate. But I knew, as a writer, we must know when to show the way.

What was the best way to demonstrate writing about loved ones with dementia, instead of telling them? Yes, showing them.

Thus two of our poems acted as the impetus for many, many words in that workshop. Ironically, my best writing that summer day originated from one of Pauletta’s poems.

In the best of Mom’s moments now, she smiles. A broad, I know you because I have loved you, smile. It is that smile I always carry with me, for those “other” days, of which there are plenty.

I don’t recall her smile so much when I was younger. In the grainy photographs of Mom, images have melted back into the ink. A regular utterance on any family vacation was, “Ette, do you have the camera?” Or “Ette, did you get a picture of that?”

While she demanded my father carry the camera, change the film, and snap the picture, she never wanted to be the subject of his frame. She would duck away from the lens or out of sight.

If she became the subject, her smile often appeared forced, painted on like lipstick. Those were my memories of her in black and white, and Polaroids.

IMG_7217Ironic now, a shift in media has brought more vivid colors, more clarity as I capture her. In tandem, she smiles more. She has let go of a certain consciousness about her appearance – her hair, her nails, her style of dress. Mom’s smile now comes from a place deep within. When she first sees me, she lights up, even if in the next moment, she begins to yell again.

I experience my mother as joyful (not happy, that emotion seems fleeting). Her pudginess gives way to the youthfulness of a four- or five-year-old. This is how and when I remember to love.

As we closed the writing circle that day, more tears had been put to paper and more joy had replaced the tears. The workshop also brought a demand for more workshops like it.

In the interim, each participant was asked to contribute two lines to a group poem. Gifted with an ability to see patterns in others’ words, Pauletta crafted this touching group poem.

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.

I have high hopes the Alzheimer’s Association, and other organizations, will continue to sponsor similar programs that use writing as a tool to mend. As a society, we don’t need more pills, just a few more pens and poets who can lead the way through the heart, even if the mind has already let go.

I can’t speak for Pauletta, but in that workshop, we sent the participants off on their day not as spouses, or siblings, or adult children. Not even as caregivers. We sent them off as writers, in hopes they could mine with their words what the mind could not grasp.

Send an email to Annette Januzzi Wick for more information on writing workshops for caregivers, individuals experiencing dementia and other related topics. Information on her upcoming workshop held in September – From Moments to Memories can be found at Women Writing for a Change.

Visit Pauletta Hansel for more information on Cincinnati’s 2016 Poet Laureate.

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Writing and Healing as Daughters and Writers

Pauletta Hansel and I sat as facilitators, at the front of the conference room in the Cincinnati’s offices of the Alzheimer’s Association, facing participants for a workshop titled, Writing Our Lives as Caregivers. Both of us were grown daughters of mothers experiencing dementia.

But Pauletta and I had first known each other from a different life. One grounded in writing. I was new to writing then. And new to an organization called Women Writing for (a) Change. I was also new to grief. And single motherhood. And the arts, as my previous training had originated from a technical background and multiple cancer floors.

But I needed something to sink my teeth (or pen into) and found how much I not only relished the writing process, but speaking and sharing with others about writing brought about healing for myself.

It was by some surprise then, that I found myself nominated for the board at WWfaC, with Pauletta at the helm. I was even more surprised that she nominated me as an “energetic volunteer of the arts”, profiled in the newspaper. I felt rewarded, not necessarily for something I did, but for something I felt.

Years later, she and I were grounded by our mothers. But we were still writers. In fact, Pauletta as the Poet Laureate of Cincinnati. And I, a blogger on the topic of dementia, with a few smaller publishing feats under my belt.

In recent years, our individual work had evolved. The work was from us, but not always about us. However, as we began plotting out our circle, Pauletta had suggested we use our own writing as prompts to move participants towards their inside words. I was surprised. I had never used any of my work as a model for others to emulate. But I knew, as a writer, we must know when to show the way.

What was the best way to demonstrate writing about loved ones with dementia, instead of telling them? Yes, showing them.

Thus two of our poems acted as the impetus for many, many words in that workshop. Ironically, my best writing that summer day originated from one of Pauletta’s poems.

In the best of Mom’s moments now, she smiles. A broad, I know you because I have loved you, smile. It is that smile I always carry with me, for those “other” days, of which there are plenty.

I don’t recall her smile so much when I was younger. In the grainy photographs of Mom, images have melted back into the ink. A regular utterance on any family vacation was, “Ette, do you have the camera?” Or “Ette, did you get a picture of that?”

While she demanded my father carry the camera, change the film, and snap the picture, she never wanted to be the subject of his frame. She would duck away from the lens or out of sight.

If she became the subject, her smile often appeared forced, painted on like lipstick. Those were my memories of her in black and white, and Polaroids.

Ironic now, a shift in media has brought more vivid colors, more clarity as I capture her. In tandem, she smiles more. She has let go of a certain consciousness about her appearance – her hair, her nails, her style of dress. Mom’s smile now comes from a place deep within. When she first sees me, she lights up, even if in the next moment, she begins to yell again.

IMG_7217I experience my mother as joyful (not happy, that emotion seems fleeting). Her pudginess gives way to the youthfulness of a four- or five-year-old. This is how and when I remember to love.

As we closed the writing circle that day, more tears had been put to paper and more joy had replaced the tears. The workshop also brought a demand for more workshops like it.

In the interim, each participant was asked to contribute two lines to a group poem. Gifted with an ability to see patterns in others’ words, Pauletta crafted this touching group poem.

 

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.

 

I have high hopes the Alzheimer’s Association, and other organizations, will continue to sponsor similar programs that use writing as a tool to mend. As a society, we don’t need more pills, just a few more pens and poets who can lead the way through the heart, even if the mind has already let go.

I can’t speak for Pauletta, but in that workshop, we sent the participants off on their day not as spouses, or siblings, or adult children. Not even as caregivers. We sent them off as writers, in hopes they could mine with their words what the mind could not grasp.

2016 From Memories to Moments-FINAL-3-page-001Send an email to Annette Januzzi Wick for more information on writing workshops for caregivers, individuals experiencing dementia and other related topics. Information on her upcoming workshop held in September – From Moments to Memories can be found at Women Writing for a Change.

Visit Pauletta Hansel for more information on Cincinnati’s 2016 Poet Laureate.

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Still Saving Seats in Old Age

FullSizeRender-28Big, burly Jack moved closer to the adjacent chair.  Jack was saving that seat in the activities’ room for Emma. But Emma was already gone.

With youthful-bobbed white hair, Emma had been a resident at Mom’s care home. Always upbeat, Emma never stopped smiling, could still stroll the path at the former Blue Ash airport, and waxed poetically about times when she was little.

Emma’s husband had passed away, prior to her entering Arden Courts. Rumor was, Emma also had a boyfriend named “Jack” before her family had admitted her to the care home. When Emma arrived at Arden, she was soon found seated in the westside parlor with another resident, Big Jack. The two could be seen finding humor in themselves (see Vignettes from a Care Home), gazing out the window, or interacting with visitors and staff.

The parlor faced the secure door. Oftentimes, upon my entry, I gravitated towards Emma and Jack first, before seeing my Mom, and offered a hug, a laugh, a where have you been sort of joke to turn the tables on their lives and mine. Their presence, an unusual lightness in their togetherness as Jack was always seated on the chair and Emma on the love seat, lifted and warmed me before I would learn what condition or mood I might find Mom in for the day.

It was as if the two had already shared lifetime together.

Both residents possessed moderate cognitive impairment. For caregivers and staff, who care for more difficult cases and love each person for who they are, residents like Emma and Jack were subtle reminders of the lives residents used to lead, the persons they used to be before they slipped out of those skins. Emma and Jack were also tokens of how sneaky and impactful love can be.

Their joy in each other’s company was evident, palpable, such that I often sat with Mom in their company to relish in that bliss. Theirs was the purest form of love.

Emma had found joy in someone who she didn’t know where he had worked. Jack had discovered delight without knowing how many children Emma had birthed. Neither had known where the other one lived or was born or what was important to them, though I suspect some topics might have risen to the surface and then soon were let go. The only thing each of them remembered was love.

One morning, I arrived to learn Emma’s son had moved her to another care home. That event occurred often, when the money ran out, when the siblings fought, when the individual progressed into a new phase of the disease.

There was never a guarantee that the first place or the best place would be the last place.

Now, I see Jack sitting behind his walker in his usual chair near the exit door, as if ready to depart. The caregivers informed me he is still saving a seat for Emma, yet his disposition is as corny as ever. “Dad” jokes come to mind. Jack still returns hugs when I offer my arms. When I say, “I’m off to go see my mom,” Jack responds, “Tell her I said hello, would ya?”

As for Emma, love had left her time and again. But she didn’t act like a person who would ever lose the capacity to love. Emma will offer and find love at her next place, of that I am certain.

Perhaps Emma’s time with the residents was to give just that, the ability to love again.

And the empty seat next to Jack? The ratio of women to men in memory care centers is 3:1. Sadly, plenty of women will arrive to take Emma’s place. But I hope Jack stands (or sits) his ground, and doesn’t relinquish that chair, as a reminder of how fleeting and precarious unions can be, and yet still be profound.

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#NeverForget Ice Cream

FullSizeRender-27#NeverForget Ice Cream

I scream,
she screams
at me

for asking her to move, to walk.
It’s late. Seven p.m.
She has sundowned before the sun
has dipped.
But I recall long nights
of drives to Dairy Isle
when we dipped our tongues
in banana custard crème
and then quenched our imaginations
with the colored fountains near the waves –
Red, yellow, orange, green, blue.

Red, yellow, orange, green, blue,
colors sliding into one another
as her moments and moods do now,
with no real distinction between
a spot of ice cream
and lathered soap.

Finally, we stop moving.
She stops
tearing into me
for being a son of a bitch
though I want to correct her
and say girl, not son.

I hold my tongue
wait for the ice cream
to cool her temper,
and my ire at why
I am here at all.

Why am I not protesting
with black lives that matter.
Because this life in front of me
that calls me honey,
a taste sweeter than peach,
is all I can feel.

And I will tell my husband later,
if we each take care of one,
wouldn’t that be the thing?
That would stop the pain
despite how many times
she has wanted to strangle
me with her killer looks,
because she doesn’t understand.

We all offer context for lives we are leading.
We all offer reasons for ones we are not.

But just for a moment,
she grabs the creamed ice
from the place between us
where it sat as peace offering,
an offering of peaches.
She reaches for the spoon –
with a spoon she knows what to do –
and scoops milk into her mouth.
A mother feeding her own self,
as long as someone else
has brought the ice cream.

And wasn’t it worth that screaming,
for her one cool plunge
to a place inside
no one else can touch.

 

AJW 7/2016 – This poem was written shortly following the shootings of two black men, at the hands of police, and also following the deaths of five police officers, in retaliation. I followed my heart, to my mother’s.

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Dishin’ Up the Soap

FullSizeRender-26The Soap Saga – Part Two.  For Part One, click here.

“Young lady, if you’re lying to me, I’m gonna wash your mouth out with soap,” my mother clamored.

I was ten, and swearing on the Bible had not been enough to convince my mother I wasn’t lying about where I had been.

I wanted to ask if she planned to use Ivory, Dial. Or, would she choose Saddle soap, which no self-respecting shoe store family goes without. Or, Mom’s selection could include the dreaded Fels Naptha, which I had used a fair share in my short life to fight off the unrelenting itch of poison ivy.

No, I wasn’t lying.

Regardless, my mouth still received a hardy cleansing.

Her choice? Ivory, of course.

That memory came to me, as I watched Mom, now eight-eight, lie restless in a hospital bed, hands restrained, lips and throat swelling rapidly.

I had thought the nurse at Mom’s care home was joking the night she called. “Your mom swallowed or took a bite out of some soap,” the nurse had said over the phone. “Her face is swelling from some sort of reaction. I called the ambulance.”

During my rushed drive, I couldn’t push away the memory of Mom washing out my mouth. Finally in the ER, when the doctor asked Mom to open wide and say, “Ahhh,” I swear I saw bubbles forming in the back of her mouth.

When Mom refused to open any wider, the doctor asked me, “Do you think she would let you put your fingers in her mouth and root around, see if you can get pieces of the soap out?”

Sure, that’s sounded exactly like something I wanted to do. Make my mother angrier than she already was.

Nevertheless, I snapped on latex gloves and poked around in her mouth, clearing out a few white bits that, yes, actually resembled soap. Then, she bit down. Hard.

Later, after the insertion of a breathing tube down Mom’s throat and her admittance to the ICU, doctors began to scrutinize Mom’s alibi. “What kind of soap? Where did she get it? How did they find her? Is she on any new meds?”

“Hotel or designer variety,” I answered. “Someone else’s room, which is not standard at all, probably brought in as gift or by a visitor. Found her in same person’s room during their quarter hour checks. No, they are really good at keeping out stuff that the residents might ingest without knowing what it is. No, no new meds.”

One medical expert remained adamant. “Soap wouldn’t do this.” He meant soap wouldn’t be responsible for such a severe reaction that Mom would not respond to standard medical protocol of Benadryl or steroids.

I pushed back. “No, its soap. The nurse told me she kept the bar. There are teeth marks on it.”

I repeated the story to the ENT, the pharmacist, the nurses and residents on ICU, the caregivers at Arden Courts, family and friends. And then I needed a respite and couldn’t resist.

I texted a group of writing friends that I wouldn’t attend our writing circle that night because of Mom’s predicament. “I’m trying really hard not to get in a lather about this.”

I joked how Mom used to wash our mouths out with soap if we lied or used swear words. Friends thought I was kidding.

But I wasn’t.

Then, I recalled how Mom, as of late, had taken to cussing a bit more than usual. Her crankiness level was directly attributed to how often she could get outside. Spring rains had become summer pours. August’s simmering heart had arrived in June. Her forays outside were limited and that often caused consternation on her part, thus leading to a few choice words being shared if Mom didn’t like the direction her life was taking in that moment.

I found myself saying to the nurse or anyone else who wanted in on my standup routine, “She’s had such a potty mouth lately, it was time for her to clean up her act.”

After a week, Mom had completely recovered and returned to her home. The nurse at Arden Courts asked me, “Do you still want that soap?”

She had been holding on to the soap, in case the doctors had wanted a sample to test. I was informed that might have cost thousands of dollars to determine any cause or effect. The doctors rejected my gift.

But I wanted it.

I brought the soap home and untangled it from the plastic garbage bag. The bar was of the Motel Six variety shape and scent, nondescript. I turned it over and over in my hands and ran my fingers across the indentations. That was a quality bite, as good a mold as was necessary for dentures.

No wonder why the doctors were challenged in believing me. Mom should have broken a few teeth after that kind of bite.

I sank into a chair, still reliving her ordeal. Earlier in the day, at Arden Courts, one of the caregivers said, “She gave us quite the scare. But I was so glad when I heard she was gonna be OK. She’s got nine lives.”

“Yes, she does,” I had to agree.

Finally, after two weeks of ensuring Mom had returned to her normal appetite, mobility and snappiness, I saw how effective soap could be in cleansing my conscience.

Mom really did wash out our mouths, questioning our honesty. But if I had to tell the truth now, with the threat of Fels Naptha soap hanging over me, there were just as many times we lied.

 

Lessons Learned:

 

  • As precaution, when bringing gifts or items to a loved one, check with the administrator or caregivers first. They will know if their residents are capable of discerning the danger of an item.
  • Recognize that your loved one will ingest items that you couldn’t possibly imagine. Mom has eaten a Styrofoam Easter egg from an artificial flower basket. She has also been known to gnaw at whole onions.
  • The easiest way to stay clean is to tell the truth.

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A Sigh is (not) Just a Sigh

IMG_6679The view outside was the same as the view inside. Tubes and pipes snaking around like something out of a Dr. Seuss book.

We were in the hospital. Mom was in the hospital. I was merely her loyal sidekick, accompanying her for the sake of bad jokes, fussing and ordering the staff around.

“Your mom swallowed or took a bite out of some soap,” the night nurse from Mom’s memory care home had said over the phone. “Her face is swelling from some sort of reaction. I called the ambulance.”

I heard reaction while lounging in my pajamas waiting for the NBA Finals game to be broadcast, and casually thought mosquito bite.

“OK. Tell me where they’re taking her and I’ll meet her there.”

A few device chargers later, I arrived at the hospital to find Mom in an altered state. Her lips had swollen like a Disney fish.

“Oh Mom,” I said in shock, cringing at the fear I found pooling in her eyes. And some hatred too. For Mom, my presence in a strange environment was cause for even greater confusion and an anxiety she could not articulate.

I tried to respond with my “don’t worry” eyes, but a mom was a mom was a mom. She knew when I was lying.

Mom struggled mightily to breath for the next minutes while I engaged in several consults with ER doctors and respiratory therapists and nurses and registration. Admission stuff was hard work. For everyone.

“Well, we’re between a rock and hard place,” the ER doc confessed quietly as he explained the order of events that would take place. First, sedation. Then a nose probe, then a breathing tube if they could get that down her throat. If that didn’t work and Mom’s throat was already too swollen, an emergency tracheotomy is what was typically advised next. “Do you understand how severe this is?”

I gulped.

I was still thinking mosquito bite. Not angioendema swelling. After earning my expertise in leukemia, cancer, Parkinson’s and Alzheimer’s, apparently, I was on my way to developing an unwanted but warranted interest in respiratory care.

Only after the acute event of the nose probe and successful intubation of a breathing tube, I began to take stock in the What if. What if the nose probe/intubation hadn’t worked? Any procedure with the word emergency in front of it constituted a life-saving measure. Mom had a DNR on file. Where was the line? Had it already been crossed?

Approaching 48 hours in the ICU, Mom’s breathing tube was still in place. Her body had not responded to the typical treatment of steroids and Benadryl (I kept asking if they could give me her share instead).

Nurses stood behind me to enter their data or hang IV’s while I sat bedside and wept. Chaplains came and went. The palliative care team visited often. I practiced more chair yoga in a day than a senior citizen could practice in a year.

The gravity of the situation was not without consideration. Leave the tube in too long, there was a greater risk of infection. Remove the tube too soon and leave it up to Mom’s devices and the Universe, and then what? Then what?

I had run through the DNR instructions multiple times with multiple doctors, palliative care teams and men and women in collars. I had run through that obstacle course a dozen times in my head. But never in my heart. Never as it had appeared right in front of me.

We, she and I, mostly Mom, were on a collision course with the future. And the future might not like what it saw. Or maybe that was just me.

Having traveled the road of bodily decline with a first husband who died of cancer, I was aware of the potholes and turnoffs and rest stops and blue signs for attractions along the way. But, that didn’t make the situation easier. In fact, decisions became more complex. As the POA for my husband, we had already discussed his wants. As the POA for a parent, there were family members involved. There was the knowledge that at no time in the past four to five years could my mother ever have confirmed what she first articulated in her DNR.

And now, what was the destination other than death or the relentless routine of recovery. Meds. Doctors. PT’s. Eating on her own again. Walking. Walking. Walking. Sleeping. Sitting Outside. Wheelchair? Yes, no, maybe. Soft mechanical? Yes, no, maybe. Return to her home at Arden Courts? Yes, no, maybe. Recognizing me? Yes, no, maybe.

Those were the dilemmas not written into the DNR. They were the small ones that ate away at my signature and hers. The big ones were easy to make, probably even obvious when the time came. But how many little dilemmas, insignificant if taken separately, when added together, constituted a violation of Mom’s wishes?

A new medication was ordered and administered. One that, IF it worked, we would see detectable results. And if the medication produced even more measurable results, the next step was to remove the tube and allow Mom to breathe on her own.

And after five hours, the doctor appeared. I knew his routine. He entered quietly while I was typing, but he wasn’t fooling anyone. I sent him good vibes via my laptop, wrote good vibes, good vibes, good vibes, like a child punished to the chalkboard. Then I stopped typing, because if the doctor could hear anything, I wanted him to hear the slightest sigh.

A slight man, he looked up at me, a hint of sunlight captured in his dark brown eyes. “I heard a gurgle.”

“What?”

“A gurgle.”

“We’ve got a gurgle?” I asked once more, as if the doctor has announced he had just delivered a healthy baby girl.

There was much joy. There was more waiting. Overnight. Early morning.

It’s still the same old story / a fight for love and glory / a case of do or die.

I had played so much damn Sinatra already, the walls had started to cave and the ceiling begun to drop.

But, we got a gurgle.

After the doctor’s pronouncement, I had sighed so long my laptop screened turned foggy. Despite my Cincinnallergies, I was suddenly breathing more fully too.

After all, I had been only one breath away from saying, “Yes, those are her wishes.”

 

 

Next Week: More about the soap!

 

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