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

‘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.

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.

 

 

 

 

The Measure of a Mother’s Time

 

 

 

 

The Measure of a Mother’s Time
I pause outside of “Ruth’s” door. The sun is cutting through her window shades, engraving lines of lights across her already stern face.
“Ruth” sits in a wheelchair now. When I first met “Ruth” she had been walking, though with a wobble.  Then, she transitioned to a walker. And now, a wheelchair, and not the comfortable kind.
The condition of the residents here is how I measure my mother’s time.
The ones that have left. Rosemary, who passed way. Peyton with her dog, whose family transitioned her elsewhere.
Those still here whom I wish the universe would offer a little more grace and take swiftly.
Families that come and go. The families that never come at all. The loved ones that hardly ever leave.
This is how I count days with my mother at her care come, over these past three years.

My time slows once inside her residence, as I easily adapt to a different stride.  Between the gaps in activity, I observe how my mother’s hairline closely resembles mine. We share cowlicks and thinness.  I count the ways in which we are similar, ways in which I never would have admitted to, as a young woman in my twenties. But my mother’s old age, and mine, has given me this gift to declare.

I grasp at her hands and note her slender her fingers, long nails she used to shape and polish before her night out on Saturdays with my father. Her extremities are unlike mine. I add up the ways in which we differ, and there were so many I used to bragged about in our past.
There have been days of endless wondering about my mother’s condition and countless taunts from her about my hair or shoes. There have been multitudes of moments we celebrated (fresh peace juice dripping down her chin). There have been a sequence of small stuff that I sweated, waiting, for her, or me, to change.
I have whispered incalculable confessions: Mom, you were right. Wearing a V-neck shirt makes you appear thinner and taller.  Still water runs deep.  The best way to pick a husband is to watch how he treats his mother. And battled with her on a few other fronts. Mom, spit that out, its chicken grease.Mom, running track was not going to make my thighs thicker, they were going to be thicker anyhow.  See photos of your own mother for proof.  
I have heard my mother tell another resident, who had been cursed with an endless blank stare, “Now don’t you start that with me,” and have had to scurry Mom away in a another direction before the woman could pull at Mom’s finger. I have smiled at Mom’s simple acts of beauty, as she caresses the face of another resident with gray, tired eyes.
I have survived tornado and fire drills amidst 12 women plus caregivers, with obstacles such as wheelchairs and walkers squeezed in the laundry or shower rooms, explaining over and again why so many of us were crammed into a tiny space. “When you were younger in school, your school always had fire drills. This is like that.”  “Oh,” they sigh, with slight reminiscence. Then they ask, “why are we here,” once more.
I count the caregivers that have come and stayed. They have been the dedicated majority.  Each one adores Mom’s smile. She will casually smooth her hand across their brown or tanned arms and repeat back whatever phrase they have uttered to her.  “Jean, the Bean,” they say.  “Jean, the Bean,” she says back. It’s a melodic call and response.
I tally up how babies can make her day, either prodigy of visitors or residents, but especially Prince George and Princess Charlotte, who grace the cover of every other People magazine I carry in for Mom to read.  I tally up too, the other People magazine covers, as a way to measure time, Pope Francis, Leslie Gore, B.B. King, Omar Sharif.
I rely on the fact Mom still mentions the silver vent hood atop the roof, and stops to admire the pink and green beech tree.  She is want to point out each garden stone with pebbled glass missing, assigning the stone a number, then counts ones that are not present.
We have moved on from listening to strictly Sinatra. With so many music apps on my iPhone, I can mix up the playlist to include Nina Simone or Dean Martin, Bette littler or Louie Prima, and keep track of the names that cause her to respond.
Mom wants to be held more. She grabs on to me longer when we hug. I count her hugs, and the number of seconds in which they last – all day if I let them. She nestles her face into the crook of my neck, appreciating the sense of closeness. A feeling that is three years gone for her.  Sometimes, she still pats me on the back or backside, like she did when I was five.   
Recently, the nurse noted Mom needed an annual check-up with a doctor.  I decided to switch to the in-house doctor at that point, to reduce the challenge of moving Mom from point A to point B when seeing her original doctor, Dr. Graff.
The in-house doctor phoned one day to jot down Mom’s medical history.  “About how long ago did she develop dementia,” he inquired.
Her timeline eludes me. I used to recite actual dates and times for when I noticed the occurrences. When did I know? When she balked at changing clothes, taking a bath or listening.
I gave him a generic answer. “About five years ago.”

But I have relinquished any formal answer to Mom’s calendar, the one where she dutifully kept religions holidays, birthdays and anniversaries of loved ones living and deceased, hair and dental appointments for five kids. She didn’t need Google Calendar, then or now. Her life is no longer measured in time slots or a stretch of days, but in human interactions.

I have spent more time with her these past three years, than in some entire decades of my younger years. And yet, it’s hard to imagine, I still have days where I depart from Mom’s care home in tears, usually because our day together was near-magical, or that she wanted to hold tight and not let go.  She has been a near-perfect muse, and I have only gratitude for the immeasurable amount of words it has taken to capture her essence.
A week ago, I received a call from Mom’s care home. “Your mom had another seizure.”
“I’ll be right in.”
So, throughout the week, along with nurses and staff, I waited and counted and forced her to drink water or Gatorade or anything. She was also diagnosed with a UTI, and in the midst of X-rays due to complaints about her back, the radiologist discovered some arthritis in her back.
We managed to keep her out of the hospital, and she responded slowly, her gait unsteadied and present mind still obscured.
But her recent situation challenged me back into the space of unknowing. If death had slipped from the subtle grasp of life Mom held on to, I would have sent her off with my blessing. She was already filled with peace, nothing left to add.
Until today, when an arrow traveled through my heart as she pushed a strand of hair behind my ear while I hugged her.  Count one more day I wanted her back.

 

“Don’t let them put Mom in skilled care!”

Transitioning Loved Ones Experiencing Dementia
Emails downloaded while my legs wobbled. I had just climbed a mountain – and descended one.  A 14,000 ft. mountain, Mt. Kinabalu, in Kota Kinabalu.  We returned to our hotel, and a spate of emails and texts dinged during our first brush back with the Internets and reality.
The first email I read was from my sister, Beth. I had tasked her with overseeing Mom’s care. She was also the executor of my estate, should anything happen to me, in particular, while I would have been, say, climbing a mountain.
Before leaving, I had snapped a photo of my office closet, where I kept family files, and sent the pictures to her. “Here is where Mom’s files are,” I wrote in one text caption.  “These are my personal files.” I wrote for another.
She laughed at the time. I did too, recalling how she had toted my purple folder with all my father’s medical information, the last time I traveled overseas to Ireland. My father had never recovered from a nasty winter tumble, and spent his June and July in and out of the hospital and rehab. Thus, when I had left for Ireland, he was out. While I was in Cliffs of Mohr, he had gone back in.
The irony of me leaving again had not been lost on either of us.
May 23, 11:07 p.m. Cincinnati time, May 24 11 a.m. Malaysia time was the date stamp. It was now six hours later than when Beth’s email was sent.
“Hi all. Hope you’re having a good weekend. Just wanted to take a moment to update you on a few things.”
“Mom had a seizure and is at ER.  This JUST happened so details are sketchy.  I am on my way to XX Hospital and can provide more of an update once I know more.”  
I panicked and desperately wrote back, not knowing how far behind the time (or ahead of it) I was.
Oh wow. Just now reading this. As we were on a mountain climb for a few days.”
“Is Mom OK? I can’t believe this happened while I was gone.” 
I thought back to the mountain climb earlier that morning. I had been awake since 2 a.m., trudging up sheared rocks by 3 a.m., near to the peak at five a.m.  I was whispering to the wind at that time, while also cussing at my daughter, Shannon, for getting us into this, and at my husband, who moved nimbly ahead of me, then would sit to wait. Move, then wait, instead of climbing lockstep with his beloved side by side. I quickly learned who was my parnter in the race to the sunrise. 
Beneath my scant breath had been a prayer to return to Mom.  Sure, she was 87. But that didn’t mean I wouldn’t have wanted to spend any last days with her. It is a constant fear I have now. That I’ll miss her passing away from me, two travelers on opposite bound trains.
Emails and replies went back and forth throughout the week, until I received this one. “Mom is fine, just fighting a fever now.”
I had been battling against wanting to flee back to the states, when I learned my sister was fighting another battle.
“Mom is fine, almost ready to go, but the hospital wants her to go to rehab.”
What? No. They can’t. They can’t do that. Don’t let them.  I was spewing words before even typing them. Didn’t they know, someone with dementia cannot just be moved around like pieces on a chessboard?
No, they didn’t.
“Who is they?”
“The doctors and social worker.”
I was baffled and aggravated by doctors and social workers who, employed by a hospital directly across the street from two long term care homes specializing in memory care, didn’t understand the consequences of moving Mom to rehab before returning her to her care home if it was unnecessary.  The hospital was always willing to take in elderly patients, most likely to pay for their new wing, but not willing to expend the time, energy and money to train staff properly, on the challenges of transitioning someone with dementia.
While sometimes, the decision to transition a patient to skilled nursing/rehab is logical, in particular when a physical disability, such a broken bone is in play, there is no excuse for social workers and doctors who deny the rights and wishes of not only the patient and family, but in this case, the staff from Mom’s care home.  How brazen, how arrogant, how utterly ridiculous, to protect the hospital’s readmission rate, they simply shuffled patients like a deck of cards, and moved them to the next pile. A magical disappearing act.
We should be way ahead of this curve by now, with all we know about dementia. Hospitals treating the elderly should have passed this curve years ago, and if not, then they shouldn’t be receiving reimbursements for Medicare.
Families should take heed to fight like hell, enlist the help of the care home staff, to keep a loved one in their most recent environment after a hospital stay. My mom, I was told, was crabby at times, fending off PT.  She had strangers telling her what to eat and when, peeking under her dressing gown.  I would have been crabby too.
Eventually, the hospital relented, but only after constant intervention by the staff at Mom’s care home. I was so grateful Beth had the strength to battle in the same vein I would have, with mettle and might. And I was grateful Arden Courts had lobbied on Mom’s behalf, for her to return where she was known and loved.
I returned to the states safely. Mom returned to Arden Courts safely.  Both of us on the same day, technically, depending on time zones.
I committed to visiting Mom every day for a week, to gauge her recovery, to remind myself of what I had almost missed. Mom returned home on a Tuesday, and I found her Wednesday morning, sleepy, but smiling.  I sat, and played a few Sinatra songs for her, her eyes opening and closing whenever the beat was too loud or when she knew the refrain.
The resident supervisor came into the room and together we sat on Mom’s bed, got her to drink a little Gatorade and discussed Mom’s condition, and her new meds. 
“I went over there after I got off work, and told them, they should return your Mom to Arden.”
Even the activities director later confessed, “I was insistent your mom come back to her home.”
The compassionate, wise staff of Mom’s care home were all in, why wasn’t the hospital?
For each day onwards, caregivers continued to track me down, telling me how delighted they were to have Mom back, how relieved that she hadn’t been placed in skilled nursing care.
And each day, she moved and wobbled and ate, until finally, she was initiating movement into the courtyard to soak up the sun.  At day’s end, I would share with my husband, “Mom is so good. Either she is getting some great meds, or she is just happy to be home.”
I did research the new medication Mom had been prescribed, and discovered in some instances, the drug actually slowed down dementia or Alzheimer’s disease.
But her recovery had come so quickly, more so in being surrounded by familiar faces and objects, recognizable words posted on signs, “Pull door until alarm sounds.” and “Mechanical” and “Arden Courts News Center.”
One day, Mom and I performed our standard routine, when helping her out of a chair. “Mom, let’s get up, ready? Uno, due, tre.”
We repeated together, “Uno, due, tre.”
She rose up, unsteady, then gradually fell into my arms.  I held her for so long, this little woman of so much strength and resilience. She buried her face in my neck and patted my back, as if, as if we had been young again, both of us.
When I finally pulled back, tears pooled in my eyes. “I thought I was going to lose you, Mom.”
She looked at me strange, ran her hand along my cheek, swiped my tears onto her black, polyester pants, and said, “I love you, too.”
Mom heard only what she wanted to hear. She was back.