Category Archives: arden courts

If My Mother Was My Boss…

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The holidays had brought forth what felt like the Twelve Days of Mom.

In that approximate time, Mom experienced two ER runs, one in which I drove her, the other in which I didn’t dare. She was diagnosed with three infections, multiple scab wounds, pain and discomfort from shingles, a disease for which most folks are given chicken pox vaccinations, or don’t live long enough to experience the adult onset of chicken pox. And a week of the runs caused another ER run.

And this was AFTER Mom’s trifecta of seizures, soap swallowing and sun exposure earlier in the year. (See soap blog, part 1 and part 2).

By the end of the year, I was tired. I pondered a change.

Back in my corporate days, New Year’s had signaled job change. Or at least, looking for a new one. The rush of the holidays always led to a significant energy drain. Like any good employee, I directly attributed the drain to my job or boss, but never myself.

As 2017 approached, I had found myself in the same mode. Tired. The kind of tiredness that comes from knowing what comes next in my mother’s moment, and also, not knowing.

At month’s end, when I spoke to her house doctor, he flipped through her bulging chart. After five minutes or so, he looked up at me. “She’s one tough lady and you have one tough boss.”

Yes, in what job could I be employed by a boss who forgot all the good years I had put in, for the sake of one awful moment in which I accidentally bumped Mom while trying to hold down her arm so the nurse could get the blood pressure cuff around her triceps long enough for Mom to yell, “Oh, no, oh wait a minute, wait a minute, wait a minute?”

In what job could I work for a boss who voices a long stretch of No’s when she doesn’t like something? Remember what Ralphie said about his dad in A Christmas Story? “In the heat of battle my father wove a tapestry of obscenities that as far as we know is still hanging in space over Lake Michigan.” If Mom were still in northern Ohio, she would have blanketed all five Great Lakes with her words.

Where else could I find work where I will never get a promotion? In fact, I’m not sure I would want a promotion, because that would mean the woman I worked for is no longer in need of me. In essence, downsizing of the most tragic kind.

Where else could I be chastised by the boss for what I was wearing, as if there was a dress code for visitors at the care home? “What the hell are those things on your feet?” “Umm, boots?”

In what job could I endure my boss’s harassment for which there is no name? Its not ageist, nor sexist. The closest approximation I can come is reverse genetic harassment, in that my boss only harasses those to whom she gave birth to and is directly related.

Where else could I work where there is no strategic planning by the boss? When I plan to visit for the Christmas show, my boss takes a snooze. When I hope to bring the boss home, my boss bawls loudly and sometimes growls.

Where else could I sit at a job, thinking about all the other things I could be doing while my boss is fast asleep, but holding me in place by the death grip? If she couldn’t leave, neither could I.

In the end, the calendar turned over. My tiredness waned.

Lucky for Mom – and me – she was not my boss. But if the years with Mom taught me anything, my most important job was to sit in her quiet space and make room to meet her where she was, ER or not, furniture mover and all, and hope to one day receive a raise in hugs.

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Do Caregivers Experience Sympathy Pains?

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

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

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

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

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

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

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

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

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

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

But I went with authenticity instead of the truth.

 

If I Get Dementia

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

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

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

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

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

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

 

Annette Januzzi Wick

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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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A Respite from the Mind

FullSizeRender-21“Where’s your mother?” Dad would mutter as he wandered inside from the shoe store business or traipsed upstairs from his shaving room in the basement.

“Out there,” one kid with a mouth full of cookies would respond.

“Where’s Mom?” another kid might inevitably ask, when he or she wanted to stay out past curfew, take Mom’s Chevy Caprice or be driven to a sleepover.

Whatever kid was still in the house would answer. “Out there.”

“Out there” meant in the sun. My most vivid memories of Mom are as she was seated outside in the wash of warmth.

Summer days in Amherst, Mom often shooed us all out of the house and my siblings and I would ride our bikes to Maude Neiding pool. If one kid wanted to stay home, Mom demanded to know why. She wasn’t really worried if we were sick or had fought with a friend who also might appear at the pool.

No, Mom wanted us out.

Mom herself had little interest in sunning at the pool. I had once thought her attitude had to do with her modesty, but now I imagine her approach had everything to do with kicking us out of Ridgeland Drive and shipping us off so she could have time in the sun to herself. There, Mom could pull out a frayed vinyl folding chair and dangle her feet in our plastic kiddie pool which sloped in the backyard just enough to create a “deep end” for grass floaters and her toes.

As we grew up and our family moved to Lincoln Street, Mom could still be found outside when the weather warmed and even when it didn’t. When we moved, we had brought a few old folding chairs with vinyl straps shredded to near destruction. Mom took one of those chairs and moved it from the front porches to the back patio like a sundial.

When the sun pushed up the morning in the front of the house, Mom could be found seated in the front yard, presumably telling my father he had planted the geraniums too close together, or that there was a shred of mulch or white rock out of place.

When the sun gradually faded to afternoon, Mom followed the path of its rays and moved the chair to the back of the house, where the truckers driving by on Route 2 would honk and wave. At that point, she wasn’t wearing any sort of bathing suit, just her everyday clothes, but truckers beeped nonetheless.

About five years ago, when Mom came under my care, she and Dad lived at The Lodge apartments in Loveland on the third floor. The balcony overlooked a wooded area which padded the view from a busy Montgomery Road, but the sun always poked through, even if in splinters.

The first afternoon I viewed that apartment, I had thought to myself, “How perfect.” The sun would slice right through for Mom onto the small deck and into an even smaller living space.

So a second set of plastic chairs was transported 210 miles and placed on the deck of their abode at The Lodge.

Later, as I arrived to visit Mom and Dad at The Lodge, and attempted to coax Mom onto that deck, I discovered she had become afraid of heights. That, after her dementia had cozied up alongside her life. And that the plastic chairs hadn’t been used since the transition from Lincoln Street.

Those were the saddest days with my mother. Mom’s new living space had kept her prisoner from relishing in the out of doors in the manner in which she always had. I committed extra visiting hours just to escort Mom to the ground floor outdoor spaces where she could soak up her sun but not wander off.

While Mom had lost her ability to scale new heights, she never wavered in her desire to follow the sun. So when I took to writing and exploring my circuitous journey with Mom and her dementia, Mom’s fervor for warmth and summer came to mind.

When naming my blog, I first started using, Lost to the Summer Wind. Being that I am a purported expert in writing about loss, according to my husband, the name was apropos.

But time elapsed. Mom changed in her disease and so did my outlook. I wanted to write from the vantage point of loving and learning. A viewpoint that really represented our relationship. A perspective that offered a brief interlude from her disease.

Countless lines from Mom’s Sinatra songs had been woven into our partnership, but none stuck in my head more so than these:

I’ll find you in the morning sun / And when the night is new / I’ll be looking at the moon / But I’ll be seeing you.

When the month of March finally arrived and Mom had persevered through another winter, one where she didn’t have to drive or shovel or go outside at all, I knew it would only be a matter of time before I discovered Mom relentlessly pushing on the arm of the secure doors of her care home, being called to go outside.

For a time, the doors remained locked. The cold temperatures still seeped in, snow occasionally fluttered around, and the rains of April and May had turned all the flowers soggy.

But now, when I enter my mother’s care home, I knowingly ask, “Where’s Mom?”

I am met with a familiar nod of the head towards the out of doors, towards the sun. Or, if Mom hasn’t made her way to her personal solar system, then I coax her from inside.

During my last visit, she used a few choice words on me, for no apparent reason (which is typical) yet finally, I led her outside. When she and I approached a bench in the sun, she just sat down and uttered, “Oh there it is.”

Sun has always been a respite for Mom. And now, more so, as a hiatus from her disease. In the sun,  Mom can pretend she has shooed those aggravating kids away and dangle her feet in a pool of summer scents. And relish in this reprieve from her mind.

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A Mission Statement for Care

Five Steps in Creating One for A Loved One with Dementia

IMG_6275Providing long-term care for a loved one with dementia is much like running a non-profit. And every non-profit should begin with a mission statement.

Five years ago, I engaged in the duties of overseeing care for a mother experiencing significant cognitive decline. My unspoken mission had encompassed three simple words: Care for Mom.

I was ignorant of what actions those modest words involved, understanding nothing about my mother’s state and even less about dementia (Did she have Alzheimer’s or simply dementia? What stage was she in?). I also was naïve about the wild ride of caregiving and long-term care.

Care for Mom wasn’t much of a mission statement, nor was it visionary. Most care partners don’t realize they are directing a non-profit. They don’t have the time or energy to develop a mission statement. But, maybe they should.

Copying a generic template used by many organizations, the statement can incorporate humor or candor, but always clarity. Here are five simple steps to creating a statement with intention and compassion:

1. Note the history of the loved one. Who is the demographic represented in this “mission statement”? Write down important dates, milestones, and significant achievements. Write down what your loved one valued in his or her time before memory loss dictated needs.

Mom is an eighty-eight year old Italian beauty…

For her first eighty years, Mom worked, taught, birthed five children, cleaned grime, scrubbed socks, ironed shirts, led Sunday school, sang for funerals and fed a small army. Mom traveled to whatever far-flung child had the greatest desire for comfort and vegetable lasagna. Her mantra was to go wherever there was a need.

2. List the reasons for his or her altered path. The mission statement of a non-profit should contain the reason an organization or program exists. Writing out the rationale for care will reinforce to the care partner the current state of the loved one. This act will support others who might have concerns, or an inability to be present.

In the most recent eight years, Mom ventured down a new path, leading to the creation of Mom, Inc. that exists to:

Witness the individual course of the disease and the distinct disposition and personality traits (including smile and eating off others’ plates) of said loved one, herein referred to as “Mom”.

Utilize funds from Mom’s estate while playing keep away with the government. Accept Mom, Inc. will lose money. There should be no expectations for leftovers.

Reconcile the notion of dementia care with ignorant treatment by insurance companies or other experts, the sterile lights of hospitals and the warm arms of therapists.

Educate educators and everyone else on best practices for care of Mom, living with memory loss, and the self-care of care partner, herein referred to as a “daughter”, living with less of Mom.

3. Determine priorities, actions and responsibilities. The mission statement should specify guiding principles for decisions about priorities, actions, and responsibilities. Be reasonable. What can you accomplish? What do you need help with?

The guiding principles of Mom, Inc. will be:

To keep Mom fed and safe. Dessert first, bacon hopefully always. Includes, but is not limited to, four times a week visits, calls in the night for follow-up tests, emergency room runs, and forced Gatorade drinking to test for UTI’s.

To pay bills, argue with the insurance company, pen angry letters to hospitals about the types of treatment Mom (mostly the daughter) experienced.

To engage the services of a companion caregiver or friend in times when daughter is traveling or working. Daughter will develop deep, meaningful and respectful relationships with care home staff.

Duties of equal importance include procurement of Depends, closet and spring-cleaning, Italian cookie and powdered donut bringing, personal trainer to the “star” or army sergeant in a forced march outside in nice weather. Changing TV channels to find The Chew, tracking down lost (insert clothing item here).

Other obligations fall under the category of escorting Mom to football chili parties though she no longer follows football (mostly because she’s a Browns fan) and definitely should NOT be eating chili.

To ensure Mom has access to comfortable, attractive shoes and “cute” slippers that will support her toddling gait and will not shrivel in industrial washers and dryers.

4. Set your vision for the future. A mission statement should also contain a vision for the future. Recognize it will change. Often.

The vision for Mom, Inc. is:

To find comfort in Mom, who can be particularly ebullient, giggling at everything, including the blackbird splashing in the puddle, where a daughter only sees mosquitoes, and the mention of John James Audobon’s birthday listed in the Daily Chronicle.

To approach all care for Mom in earnest.

To learn when to laugh and when to turn away. The latter a more imperative lesson for the daughter to absorb.

To walk always in the present. Look for the hidden beauty and Mom’s baby doll in someone else’s closet. Embrace the unexpected.

5. Summarize your collective discoveries. Sometimes referred to as a tagline, after the creation of a mission and vision. Writers often reach an ah-ha moment when they realize the message carried inside their words. How will you explain your work – and it is work – to friends and family and curious bystanders.

In conclusion:

Breathing life into the woman who breathed life into me.

 

* For more information on workshops on memory loss or creating a mission statement of care, send an email to:
Annette Januzzi Wick

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‘Reminiscing about Old Age’ – Vignettes from a Care Home

FullSizeRender copy 17Oftentimes, when writing about my mother, or working alongside those experiencing dementia, I can easily capture moments of frustrations, blessings and angst. But there is another side to the disease, a softer, funnier side that one can appreciate only after hours spent in a care hour, around residents who are marshaling forth a life others cannot comprehend.

Jack and Emma are often found sitting in the white wicker parlor, waiting for the afternoon sun to brighten their day. They chat about residents who walk by. They discuss the weather. Their conversations are at best high-level to the average observer. One day, I happen upon them, as I entered through the secure doors. I always stop and say, “Hello,” as those two friendly open faces help prepare me for whatever situation/disposition I might find my mother in.

“What are you two talking about today,” I asked.

“Oh, we were just reminiscing,” Emma said.

Reminiscing was allowed, encouraged even lifted up as a victory for some shred of a memory that remained. My mother cannot, does not reminsence. Its as if her memory has been wiped clean, though she still knows people who are in her life frequently, or those that have been around since the beginning.

“Reminiscing about what,” I asked Emma.

Jack interjected, “Well, about old age.”

Singing is often a focal point, a way into a mind that is road blocked, access cut off to lengthy sentences or meaningful conversations.

A resident, Frank, was walking around with his brother, Tim. When Tim encountered Helen, another resident known for her love of Etta James, the two of them began a duet with “Yes, Jesus Loves Me.”

They sang two stanzas then Helen attempted to walk away. Tim wouldn’t allow this and said, “Not until we finish.”

He stood in her path, and the two of them finished with a flourish. Then Helen said, wisely, to Tim. “Now pay me.”

Confusion about surroundings is not uncommon, even if familiar visitors are around, or more so, especially if those visitors are around.

The other day, when visiting Mom, she muttered over and over, “I don’t know. I just don’t know.”

She had been tired, and in true martial law fashion, I had made her get up out of the chair and walk, to find another space where we could visit. We finally made it to standing then walking. But each room she entered was one more she exited. Mom was fidgety and could not settle into any one space or room, as if she was Goldilocks looking for the perfect bed, which she probably was.

“I don’t know,” she finally sighed.

“Mom, what don’t you know?” I asked.

“Well, I don’t know what I don’t know.” Then she squeezed my hand. We laughed out loud together.

She knew that she didn’t know what she didn’t know.

An unknown author once wrote, “The tragedy of men is that they forget.” But Jim knows exactly who he is.

I call him Big Jim. He is often seen in the same sunny spot of the corridors. Jim is large man and once played on the last football team that Xavier University fielded before terminating their program. Jim wears XU-related clothing everyday. Now, Jim has a bevy of names that must include everything from baptismal to confirmation to nicknames. If you get him started, he will tell you….”

“James Joseph Edward Michael Timothy Bailey,” Jim says. Soon, he’ll break into, “Won’t you come home, Bill Bailey? Won’t you please come home?”

Before long, everyone in the vicinity is singing and carrying that tune with the rest of the day, except me. Instead, I wind up hearing, “John Jacob Jingleheimer Schmidt” stuck in my brain, trying to recall how to spell Jingleheimer.

Many still posses the ability to look at themselves and those around, and find commonality.

One afternoon, I entered my mother’s kitchen area. Most of the women were finishing lunch or had already completed lunch and were waiting to be taken to the restroom, or helped up from the table.

The room, while sunny, took on a strange blue hue. Then, I noticed that all the women were wearing teal, with the lone exception of my mother. I have noted this before. One of the caregivers told me, some days, she picks a color to help her decide how to dress the women that day.

I pointed out to the women, “Look, you’re all wearing some shade of teal,”

Of course, my mother jumped in and said, “What, you want me to kneel?”

“No, teal. You are all wearing teal.”

The women swung their head around at each other, astounded by the color and the matching.

One resident piped up and said, “Well, at least we have that in common.”

And finally, a few more from Mom:

Sometimes, my mother makes sense.

When a caregiver asked Mom to rise up and follow her to the bathroom, my mother looked up and said, “Well, anything could go wrong around here.”

During the past weeks of abundant sunshine, I made the extra effort to visit Mom frequently so she too could catch and hold on to the last rays of summer. It is a sadness that sets in for me, to watch the sun fade from her views in the winter months.

After much cajoling, I escorted Mom outside for a stroll. We finally exited the shady area and I stood still in the sun. My mother, meanwhile, was focused on a dead leaf she could not move from her path with her shoe.

“Mom, look up at the sun.”

“What?”

“The sun, look up.”

“Where is your son, where is he?”

“I’m not talking about that son. But anyhow, he’s in Oregon.”

“What the heck is he doing there?”

Moments that make me laugh. Moments that take my breath away.

As we sat in the courtyard one day, another resident and her brother passed us by.

“Hi, Jean,” the brother said.

“Hi,” Mom replied, her friendliest tone not used around me, not ever.

“Who is that pretty girl you’re there with,” he asked.

“That’s my d-d-daughter.”

We all clapped.

Moments that I will long remember. Mom, in her purple sweater with a purple shirt underneath, and nails that I painted purple, just to get her back for always dressing me in yellow when I was a toddler, applauding her memory.

Moments colored with laughs.

When I painted Mom’s nails with a new color, I was reminded of the poem, When I grow old, I shall wear purple and the lines: “I shall go out in my slippers in the rain. And pick the flowers in other people’s gardens, And learn to spit.”

When I grow old, I too shall wear purple, like I did as a teen, in my twenties and thirties and now. I shall sit in my writing room, painted a shade of purple called Soulmate, and I will laugh about my memory and hopefully remember to laugh.

* Names have been changed to protect the innocent. Mother of course, needs no defending. She is perfectly capable of doing so herself.

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Hugs Not Hikes

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Regardless, this year, I’ll walk.

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

 

 

 

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

 

 

 

 

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