Category Archives: mom

In Her (Virtual) Shoes

IMG-5963Rubbing hands in the drafty Roh’s Café, my fellow writers scribbled across blank pages, responding to a prompt related to Connor Oberst’s Desert Island Questionnaire song.

I wrote down shoes.

My answer is always shoes. A byproduct of the trade, leftover from the family’s days in the business.

I would abscond with the perfect pair of sensible, but fashionable shoes. Flip flops I could sew out of animal skins. Boots, too. But those fuchsia suede ankle booties? I would escape with them.

A new writer to our circle offered a vastly different response. Russell wrote, “I’ve been thinking about VR in geriatric care…..how you experience reality….how deep can someone be immersed.”

And there we sat, awed by the magical nature of writing prompts. Magical in that his words didn’t surprise me. I too had been thinking about virtual reality, in particular, Mom’s, after observing her earlier in the day. Stranded as she was on another shore, I imagine Mom would carry only memories to a deserted isle.

I had been researching VR in the dementia field for a while, ordering Google Cardboard goggles to play around with the notion. In digging around through various site visits, I discovered the way back. Actually, The Wayback.

In the dementia field, social workers believe triggering memories of joy in one’s life can translate to a sense of peace in the present moment. Many care homes and family members already use various props and pictures to do so. Virtual reality extends that practice.

According to The Wayback website, the project’s mission “will be a series of virtual reality films that faithfully recreate popular, positive moments from our collective past – taking the viewer back to a familiar time and immersing them fully for a few minutes using Virtual Reality.”

Based in England, where most dementia work has been breaking ground, the first Wayback film was developed around the Queen’s coronation in 1953. Exact scenes have been recreated and a viewer can explore the entire experience, complete with graphics and sounds, from various angles using VR technology.

Any viewer can watch this film via Youtube on a mobile phone, or through the use of Google Cardboard goggles.

According to one expert, Dr. David Shearer, an expert on Dementia Care Matters and host of a TV series, Dementiaville,”We are all made up of our emotional memories. As we experience dementia our world seems to shrink – holding on to who we were is a way to hold on to who we are now. Anything that offers the opportunity to connect and be reached is strongly welcomed.”

The overall aim of the project is to create a series of films from various decades that speak to the lifetimes of those experiencing dementia.

When Russell read his words in the café, my world of shoes and his of VR collided across the community table. Long after our writing circle departed for our warmer cars, I reached out to Russell and shared with him about The Wayback.

Russell responded, “WOW. That article encapsulates a lot of my curiosities and hopes about VR. The idea of reliving something to jog memories, etc. I have a more morbid fascination with it too — this idea of losing oneself in VR…what weird psychological issues could arise if someone who is wheelchair-bound or something spent 12 hours completely mobile in VR, then had to come back to their not-so-spry body in reality? Would it be overall beneficial for end of life care? Or would it be depressing to have the option of VR but with the requirement of coming back to your real body?”

In my head, I too often shuffled through other sensational salves for dementia, such as The Wayback or Russell’s notions of losing oneself.

Through the Youtube app, I had watched the Wayback film and a few frolicking dolphin clips all with the Google Cardboard. I grasped the fascination. And I struck upon an idea that expanded on the vision of The Wayback.

When my husband and I toured Havana, Cuba, our itinerary included a social program visit to the Art and Film Institute. We learned how a stop-motion film was made. It was a dreary, but pointed, film about domestic abuse and the film won several awards. A stop-motion film is created via the building of a set comprised of objects and characters, animating the objects and characters one frame at time, and moving and filming them again. It is a long, pain-staking process.

That process tied into The Wayback. And to Mom.

Could I reconstruct a life from scraps of my mother’s belongings? I possessed Mom’s Dumas cashmere coat and her black purse with gold clasp, some old broaches and Christmas tree earrings, several of her Christmas decorations. I also retained her crème ceramic bowl in which she mixed her cookie dough, her flour sifter that still has a speck of flour from 2010 on it, and her cook book collection that ranged from the Joy of Cooking to The New Zucchini Cookbook (she had two). To that end, in my pantry, I stored several of her metal cake molds. Who doesn’t remember Mom’s bunny cakes? She baked shaped cakes for all of us, mine without the coconut fur. She baked a cake every year for Davis, in shapes ranging from Scooby Doo to Bob the Tomato and Larry the Cucumber (Veggie Tales).

With Mom’s personal pictures and objects, could I recreate an hour out of a day in 1975, when my mother would relish the quiet while all were at school and she turned out cookies by the dozen?

Or a significant Christmas, one in which Dad engineered his trains to run beneath the ping pong table or hung the Christmas lights in a straight line, or all Mom’s kids were at her home, having schlepped their bags from the far corners of Ohio or Oregon. Or an evening with all the grandchildren present and superimposed.

Could I reconstruct the two-story colonial home on Lincoln Street, the home that filled Mom with pride? Would she wilt under the weight of the expectation of having to clean it? Through graphics, could I rebuild the ranch on Ridgeland Drive complete with flooded basement, where Mom always proclaimed, as a family, we were happier because we were closer together if happiness meant three girls housed in one bedroom? Would she wait at the back door with Swiss Miss hot chocolate, after we sledded down the hills of the sanitarium?

Through the charmed viewfinder, Mom would be encapsulated in the life she lived. Would she find comfort there? Could she return from that moment to the one right in front of her, where she does not recognize those around her, and still find joy? How long would that joy last? And what would three minutes of stop-motion animation be worth?

Playing that line of thinking out to its bitter end, would the project travel back further in time before Mom chose Dad, or chose marriage over work. Would she have chosen otherwise? Would this leave her with a pang of regret to transport into the present? Would that be considered mind manipulation and who then becomes the POA for a mother’s memory?

Imagine an app where I could view that film of Mom’s time, as personal as a pair of worn shoes, form fitting, evidence of her life and style choices, maybe a chipped heel in a nod to journeys taken. A film that responded to a memory Mom would have carried to a desert isle, more precious than a pair of shoes.

Say that you were stranded on a desert island…

Shoes would still be my answer only because I’d name the VR app InMyShoes. But I would skip the fuchsia booties, maybe kill a rabbit or snake and sew myself a pair of sandals. And replay over and over Mom’s memories stowed away on that sandy shore.

 

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Cheering on Lives

68718I entered Arden Courts, arms loaded with a box of cookies. High-pitched vocals echoed through the hallways and I cringed.

From down the hall, a familiar voice rang out. “Your mom’s down here.” It was Becky, the activities director.

I nodded her direction. “Ok. I’ll just put the cookies away (meaning out of sight of lurking cookie monsters) and come find Mom.” I shuddered to shake off the shrill, but pleasing, notes drifting alongside me as I coursed through the hallways.

I let one of the caregivers know about the cookies’ whereabouts and sauntered towards the community center. As I closed in, the singing voices sounded more like, well, cheerleaders. Wasn’t it way too early in the day and my coffee intake for cheerleading?

I approached the doorway, glancing around the room for signs of Mom. At first, my eyes skipped over my own mother because she was squirming in a wheelchair. Probably to move her more effectively for the music show.

I entered the room from the rear. Blood pulsed through my ears as they were again struck by the voices of the woman crooning and carousing with the crowd of residents who merengued with shakers and tambourines to the tunes. A chorus of residents hollered, “You’ve got the cutest little, baby face.”

For a spell, I watched this spectacle and Mom from back of the room. Like the bouncing ball over top of old songs on TV, Mom’s eyes followed the bopping women around a room cramped with wheelchairs and restless residents.

Finally, the two blonde-haired women and their accompanist, one female singer and one male, stopped to catch their breath.

“Hi, Mom,” I whispered in her ear. I kneeled down and lifted her hands to help shake the plastic maracas she held. I couldn’t tell Mom to do so, because, well, she wouldn’t.

Hints of Me and My Gal floated around the room. I couldn’t move, mesmerized by the women and their accompanists with such chipper manners and the thinnest layer of makeup to enhance the joy they exuded and extracted. The two lead singers’ faces gleamed while they danced around in blacks tights and a purple sleeveless athletic shirt. They also wore something else. Contagious smiles.

Becky leaned in to me. “They’re former Ben-Gals. Priscilla, and Julie helped, started this group and they’ll be coming the next few weeks.”

Another resident wandered off and a chair opened up next to Mom. Settled into an oversized- transport chair, Mom wasn’t likely to meander. Each time Julie or Priscilla patted Mom’s arm or passed her by while dancing to Ain’t She Sweet, Mom’s hazel eyes grew brighter. She lifted her eyebrows as if in disbelief.

Over the course of an hour, the women met Mom’s gaze or that of the other residents with an intensity I cannot replicate. One ran her hands along the sleeve of Mom’s bejeweled shirt and Mom caressed the performer’s glistening cheek in return.

During the next song, Priscilla stood before Mom, holding and swinging hands. She was the true founder of Cheering for Charity. Priscilla’s mother passed away in 2008 from Alzheimer’s complications and Priscilla founded the organization shortly thereafter, to bring more life into the world of those with dementia or living in other care homes.

Still locking arms with Mom, Priscilla spoke her words to me. “I see my mom everywhere.”

I nodded. Her work had become about her mother’s life. That mantra I understood.

The pianist played a few notes, prodding the audience towards the next tune. “Shine on, Harvest Moon,” she serenaded the residents and the velvety tones covered the room in warmth. Then, I Want A Girl (Just Like The Girl That Married Dear Old Dad) followed.

Peggy, a petite and ebullient resident, stood from her chair and tugged at Julie’s sleeve. “Do you want to see the gal that married dear old dad?” Her hands shook. From between two tattered cards carried in her purse (many women carried purses), she pulled out an old-fashioned, airbrushed photo of her mother.

“She’s beautiful. She looks just like you,” Julie directed back.

Peggy beamed. “Everyone says that.”

I bent over the photo. “What was your mother’s name?”

“Margaret. Just like me.” Her chubby cheeks grew round.

After the close of the event, Leah, the pianist, handed me a business card. Later, I sent the group an email in appreciation for their gift of goodwill: My mother is not one to follow directions, so she won’t shake a tambourine for instance, if you tell her to, but I discerned, from her smile, that she found your presence a light in the midst of her sometimes dark mind.

I meant it. Theirs had been the rare entertainment with exuberant voices, a hop in their steps, glowing smiles, and a compassionate touch.

Only an hour earlier, I had sat in the parking lot, hands glued to the my steering wheel, debating whether or not to listen to the president’s press conference about the mass shooting in Las Vegas. My heart clamped down to prevent the flow of news. I exited the car and trudged into Arden Courts.

When I departed 90 minutes later, I faced the bleakness again, this time with more strength. There had been a catharsis in those moments with the cheerleaders. I used that term with the utmost respect.

I had given up cheerleading in ninth grade to tryout for volleyball (it was a win-win for many folks). Throughout the morning performance of Cheering for Charity, I had maneuvered my thoughts away from Las Vegas and towards my junior high cheerleading days. Getting stuck grabbing a basketball net while another cheerleader walked out from beneath me, and our seventh grade history teacher who tried to helped me down. Skirts flipped up by the boys seated behind me in Spanish class. The fact I could never do the splits, not all the way.

Many ah-ha moments often washed over me whenever I left my mother. Pressing the ignition button with my index finger, I hummed to myself. “I’ll be loving you, always. Always.” I tried to mimic Julie’s sweet tone. The memory of the glow circling my mother’s face lit up the interior of my car.

That particular day, the women had not only cheered on Mom to find a way back to the youthful lightness of her days. The group had cheered on the ever-so-small movements in the midst of a horrific maelstrom occurring 2,000 miles away. For forty-five minutes, I too had forgotten my despondence and joined in the chorus of cheering on lives.

AJW, 10/3/17

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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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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.

 

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Buon Compleanno Vinzenzella

Today, my mother, Vinzenzella Jean Giuliani Januzzi, turns 87. She no longer lives at home, though I call where she lives her “care home”, but the blessings of these past years, when she has lived in a state of forgetting (who doesn’t), are countless.

She will dance and sing to Hey Mambo, Mambo Italiano with the best of Italian accents. She no longer speaks from her mind, but from her heart. She forgets how to be sad, though sometimes she can become VERY angry, mostly at someone telling her what to do. She hugs more, and shrugs less. And has yet to meet a cookie she hasn’t devoured.

As of late, for whatever reason, even the center’s chaplain has noticed a lightness in Mom’s demeanor.  He asked me one day, What did I attribute her change to?  And all I can imagine is that, in the midst of all her letting go’s, she is becoming closer to the perfect state of being, that is, of being human.

To be in her presence during these times is an awe-inspiring event, such that I am often brought to tears for no particular reason. She and I exist in this state between my grief, and her pulling towards home.

My mother was named after her birth father, Vinzenzo, who lost a battle to meningitis before he met his little girl.  Some of Mom’s official documents note that her birth name was Vinzenzella, and not Vinzenza, as originally thought.  This came to light a few times over the decades, as she pursued a passport for our trip to Italy.  As I went back and read through many of her personal papers, including high school reunion programs, I immediately sympathized with her, and the fact society continued to rebrand her first and last name constantly.  Misspellings abound.

Ironically, when I call her Vinzenzella, she repeats the name so fluently, it is like song coming from her heart.

And so I return to the chaplain’s comments, and my conclusion. Perhaps Mom is arriving closer to her birth name of Vinzenzella, and thus, nearer to her state of perfect being.

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A Scuffle with My Mother – And a Poem

A Scuffle with My Mother

Yesterday, I got into a fight with my eighty-six year old mother.  You ask how is this possible and I say, its completely so.

I had an hour between meetings near her care home and the sun was a glorious golden orange for the afternoon. My mother loves the sun, and in my heart, I know it helps lighten her attitude.

I found her exiting her room, following lunch and a clothing change by one of the caregivers.  As she approached me, we exchanged hello’s, she with faint recognition of me. Since she was already making forward progress, and she gets easily distracted, I immediately coaxed her towards the door to the courtyard.
“Let’s go outside, Mom.”
“Why?”
“Why? To get some sun?”
“But I don’t want to get sun.”
“But you love the sun.”
“No, I don’t.”
Exasperated, but determined, I knew her time in the sun was waning, as colder weather approached and she tended not to venture outdoors at the slightest chill, not understanding she simply needed a coat or sweater.
She grabbed my pinky finger and began to twist it around. Her face curled up in snarl.
“Ow. Mom that hurt.”  I scolded her.
“Well. Well,” she replied with little knowledge of the pain she had inflicted – and why.
“Oh, Mom. I know you hate me telling you what to do, but just trust me.”
And suddenly, her eyes brightened.  “Yes,” she answered. She followed me obediently towards the door, though it wasn’t clear which she was responding yes to, my bossiness towards her or her trust in me.
I maneuvered around her body, as she still had my hand in a death grip, to lead her to a chair in the sunshine. She no sooner sat down, relieved, closed her eyes and muttered, “Oh. That sun today is something else.”
Yes, it was something else. She was something else. For between those moments of loving each other, we both fought for control, we were both something else.
An hour later, I left her seated on the chair, snoozing with glass of strawberry Gatorade in hand, wondering if she would spill it on herself when she woke.  I didn’t care. I will lose this war with her dementia, but at least for the day, I won a small skirmish. She, in the glorious sun, won a little battle too.
This piece was inspired by the declining number of days in which I know Mom will be able to sit outside at peace.
Opus Dei
Her head drops
amidst the blue screen of sky,
as if her crown has landed
on a white pillow of down.
Eyelids closed,
she is the picture of infant innocence
even past eighty-six.
God has painted her as art today,
a stained glass creation.
Close up, diamonds of skin
are flushed in flesh.
Her lips have been brushed with a faint rose.
Her ears softly fold over pixie-cut
gray hair. Brown lashes and brows –
near invisible lines –
He has deftly touched
to define what she can still see.
Occasionally, His masterpiece
wakes to the chirp of a bird
then returns to slumber in sun,
his final touches glazed in bronze.
She will never be more beautiful
than in this
moment of mastery,
subject of the maker’s brush.

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Alive Inside: The Movie and My Mother

Musis is…truth (Kerouac), magic (Rowling), the existence of God (Vonnegut), the food of love (Shakespeare).  Music is the self still alive, as evidenced in the documentary Alive InsideAlive Inside is the story of a social worker, Dan, who uses music via personal music players, to awaken the inner lives of those afflicted with dementia or other diseases whose existence is limited to a nursing home or long-term care.

From our earliest beginnings, scientists have discovered patterns in a baby’s cries which mimic those of a mother’s voice. The power to imitate, to repeat, to be moved. That is music.

I have spent hours with my mother, seated at her side in her care home, where the strains of Tommy Dorsey, Billy Holliday, and her beloved Frank Sinatra float between us. I can say with certainty, a surreal recognition glides over her face, whether she is at rest, in the sun, or in bed, recognition far more powerful than recognition of my face, or that of my father in their wedding picture. It is a recognition of self. 
When Dan interviews one of his clients and asks, “What is it you don’t remember, or would like to remember,” she replies, “Who I was, after I was a young girl.” Dementia, Alzheimer’s, old age takes many back to the far reaches of youth’s shore, but there are lost years that cannot be accessed by a photograph, a spoken memory, even a daughter.
As outsiders, we don’t know which years are the lost ones. But we can rule some out, speculate about others, and use music to zero in on a few.
Were I to develop some kind of dementia, and my spouse or children planned to place a music player to my ears, they for certain would know to play The Boss, right?
But would they know to play ZZ Top, who I saw in concert in college, with my ultra-conservative roommate Janice, and we played air guitars to Sharp-Dressed Man, or would they play Robert Palmer, for when my sister and I dressed as the Palmer girls one Halloween during my first year living in Cincinnati?  Would they select Joshua Kadison’s Beautiful in My Eyes, from my first wedding, The Servant Song, from my second?  Would they know, when Seger’s Against the Wind plays, the song conjures up memories of high school track, and from then on, every life challenge I ever met and surmounted?
Or would they play Sinatra, as homage to my mother, and the times she and I journeyed together and separate, seated in the sunshine on worn wooden benches, each of us lost in a world our minds created?
Dan, the social worker has a worthy goal for his Music and Memory program, placing personal music players inside 16,000 nursing homes across the U.S.  I don’t know if this goal also includes long-term care centers such as my mother’s. And there are plenty of logistical challenges to this, yet centers across the U.S. are implementing this program every week.
A few weeks ago, I told the activities director at Arden Courts, Becky, and the corporate nursing director, Jesse, about Alive Inside.  I had been an early Kickstarter funder for the movie, despite receiving no scrolling credits at the end.  But I invested because I believed in its mission. I had witnessed it firsthand.  I cheered when the movie was accepted at Sundance, and said, “Of course,” when Alive Inside won the Audience Award.  I badgered the producers, When will you come to Cincinnati,because the movie had been out since July and only now, has it appeared in a local theatre. Columbus got the screening before Cincinnati did.
Becky is now looking closely at the program, seeking funding and discerning training methods.  Offering to assist in these efforts, I have spurred her on. After all, Becky is the person who approached me, about bringing Matt Snow, Cincinnati’s Sinatra, to Arden Courts for my mother’s birthday, while throwing a Spaghetti Dinner party for residents.
I am a bit young, by demographics, to be the daughter of a woman of near 87.  Many family visitors are ten to fifteen years older, and have not been exposed to technology that can make an impact in the life of someone with dementia.
Even if Becky does not succeed in implementing the program, the next generation of family caregivers, those in my age bracket who can maximize technology and whose parents are approaching the age in which they might not access music on their own, will stimulate continued development of programs like Music and Memory.
In ten years, Dan’s personal work will still continue to inspire the likes of me, as I sit, grounded with my mother, and select just the right song for her.  She has a CD player at her bedside, and one of my favorite past times, when she doesn’t feel like rising from bed, is to play Louis Prima because he tosses Italian phrases into his music that she repeats, and understands. Another unrealized benefit to music is that music in a foreign language reawakens another part of the mind, in particular for my mother when her parents spoke Italian. I’ll also play a little Mario Lanza, just to throw her a curve. She laughs when I sway at her bedside, and some days, she will join me. It is the sweetest of times.  
I have specific playlists for Mom, and make unwise use of Pandora, which is why I have more data usage than the rest of the family. I load up YouTube videos showing Frank actually singing with the Rat Pack, or with just Dean Martin, and a drink in hand. When Mom visits our home, Mark cues up Sinatra on our sound system so that “Frank” is playing before she walks in the door, and she knows is she in a home that embraces who she is.
I can’t make my mother’s life perfect, and despite her best efforts to do so when we were younger, it never was.  Sometimes, I neglect to make an appointment for her haircut.  She has gone without matching socks for a few weeks, because I forget until I arrive, then am too tired when I leave to go shopping and return.  She doesn’t drink purple Gatorade, “tastes funny,” but I show up with wrong color anyhow.
But the days we dance and sing and she nods to strains of Sinatra are the best days, when I leave weeping and beaming. Tears because I am so desperate to know that person in her lost years. Smiles because in some small way my mother has found, or recognized, herself as being whole in those moments of music.
When the movie was over, I walked out, and the only words out of my mouth were, “Well, at least I didn’t cry for all 78 minutes.” 
The stories were heartwarming and heartbreaking, but I cried only with joy. The one small gift I can my mother over and over, is the gift of song, when my mother’s physical welfare takes a back seat to the well-being of her soul.

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The Longest Day – Why Not Be Idle?

Social media has been abuzz with The Longest Day Campaign, sponsored by the Alzherimer Association, in conjunction with June’s National Alzheimer’s Awareness Month.
“On The Longest Day, teams around the world come together to honor the strength, passion and endurance of those facing Alzheimer’s with a day of activity. Held on the summer solstice, June 21, 2014, this event calls on participants to raise funds and awareness to advance the efforts of the Alzheimer’s Association.” – Alz website.
One participates by selecting a hobby or activity that one loves, or the hobby of someone who suffers from dementia or Alzheimer’s and encourage others to join in the fundraising. Then to celebrate at day’s end.
One of the concepts of The Longest Day stems from the notion that when you are with someone with dementia, an hour can feel like the longest day. When you are caring for them, feeding them, or simply sitting side by side with that person, time slows to a crawl.
And while the day promotes a day of activity to honor the endurance of those with the disease, I advocate a time of sitting still.
My mother suffers from dementia. When I visit her, I often refer to my time as an “A day” or “B day.” The term comes from my son’s high school schedule. His best days were often “B days,” shorter, more creative classes and teachers, more breaks. The “A days” were longer, with more grueling courses.
So if Mom is having an A day, it is a time filled with anger, angst, anxiety, aggravation, and anything in between.  If she is having a B day, she is boisterous, beguiling and beautiful.
I tell this to my friend T, whose sister suffered from a stroke and dementia. “You never know what you’re gonna get, when you show up to visit,” she agrees.
“Its true. You don’t know when you set foot in the door, if its an A day or B day.  And they sometimes alternate within the duration of one visit.”
On the days when I say to Mom, “Lets go for a walk,” she will ask, “Why?” and refuse. Then, I might suggest the same minutes later and she will rise.
But many times, she doesn’t want me telling her what to do. She has caregivers for that, and they actually leave her alone more often than I do. She wants me to sit. To hold her hand. To look her in the eye.
And to do so takes not a day’s worth of activity, but a moment of intention. Of setting aside the phones and emails, and what you think your mother needs. A moment of stillness.
Recently, in our conscious feminine leadership gathering, we discussed the notion of idleness, and one participant Phebe noted she often acted as if she were talking to her dog, when she reminded herself to be still. “Phebe, sit,” she would mutter to herself.
Idleness is not a sport we as a culture excel in. It is also something that we cannot raise funds for.  But it is a key aspect when raising awareness about dementia/Alzheimer’s.  Because when we are idle, we see the little moments. We see around the edges of the person in front of us. We see all of them, not the person they used to be.
I recently brought my mother to visit at my new house. After lunch and some time in the courtyard, I escorted her to the car, so I could drive her back to her care home.
As we sat at a red light, beyond the intersection rose a billboard for Three Olives Vodka, with a photo of Clive Owen as pitchman.  It was a long light, and as I turned to check on Mom, she was smiling back at the photograph.
“Mom, what is it you’re smiling about?  What are you seeing?”
 “He has a lot of light around him,” she said, pointing to rugged face emanating from off the billboard.
“Light? What?”  I didn’t get it, but she kept grinning ear to ear.  I just wasn’t sure what she meant by it. Even as I turned the car in the opposite direction, she craned her neck to get one last glimpse of Clive.
Now, I too, find Clive attractive in a British sort of way. But he in no way resembles any of those blue eyed handsome devils that Mom is famous for stalking, whether she knows that person or not.  He doesn’t even have blue eyes. His eyes are green, which might be somewhat difficult to distinguish in the billboard.
While I saw only dimness in the ad, she saw the light around the edges of his face.
The moment passed, and Mom began reading green highway signs once more. But my mother still saw light in something as simple as an advertisement, and I need to be mindful enough to honor that.
I will probably visit my mom tomorrow.  I will probably give her a few instructions that she may or may not have wanted to hear. I might comb over her hair and cause her some aggravation. I might hug her, and ask if she will hug me back.
But the best awareness I can raise is through my own consciousness.  Afterall, a wise boater once told me, and reminds me often, “Idle moves the boat forward.”  And in the slippery waters of dementia, that seems like the best course of action.
Author’s note: Remember Alzheimer’s is just one form of dementia and not the other way around.  View this page and you will see from a marketing standpoint, that dementia and Alzheimer’s are used interchangeably, mostly for the benefit of convenience or branding. http://act.alz.org/site/TR?fr_id=5860&pg=informational&sid=18343. Of course, this is another issue for another time.

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With or Without Caffeine

I am almost tiptoeing down Mom’s hallway this morning, the silence overwhelming.  Is everyone napping?  In their rooms?  In activities, though the room looked empty upon first inspection.
I come upon Mom, seated in her regular vinyl chair, in the far corner of the TV room.  Six other women are present in the room, some snoozing, others watching The Andy Griffiths show, one whistling along.
“There she is,” my mother greets me. This is her standard phrase when she first notices me coming towards her.
“Well, hi Mom, how are you?”
She repeats after me a lot.  “How are you?” then quickly segues to her, “well its right there.”  She points to the vacant magazine rack, no running commentary, she simply wants me to know it exists, and that she has questions about why it sits empty.
We nuzzle for hugs, and she tugs at my fleece.  “Hey, I like that.”  I tell her she has the exact same fleece, only in pink, and she questions me, “Where?”
“In your room?”
“Where is that?”
Her room is right around the corner from where we are located, but I let this drop.
She is giggling now, at the sight of me. Her eyes, which I expect to be sleepy, are wide open, I can almost see inside her mind. If only.
“Hey, let me see that,” she reaches over to take hold of my short coffee cup, filled with a vanilla latte.  Normally, I would have ordered decaf at this point in the morning, but I was feeling risky and went with a regular.
She sips on the coffee, licks her lips, while we discuss the rain. “Look at you, you have water on you.”
“Its pouring, outside.” I emphasize pouring, for the remaining audience.  Many heads shake.  “Oh no,” one whispers while D., who is typically nonresponsive, perks up and mumbles in our direction. What I don’t know, but I am surprised by the mere fact she is attempting to speak.
Dominiki strolls by. She loves Mom.  She sits with us for a few moments, while Mom keeps asking, “Hey, what’s this,” referring to Dominiki’s tattoo on her arm.
Suddenly, Mom is giggling.  Then, out and out laughing.
“Mom, you have the giggles today.”
“Oh, I do?  Well, I guess I do.”  She bursts out in laughter some more.
On a dismal morning such as today, I would have expected her to be fast asleep, a little Sinatra or Glenn Miller turned up in her room.
Instead, she is moving constantly, like a character in an arcade game. I cannot keep track of her.  She proceeds to sit in the chair in the kitchen, the only chair.  I call it the Chairman of the Board chair. She can oversee the food preparation, the medication dispensation, the parade of residents marching up and down the hall to meals or activities, the entrance to the Tub and Shower Rooms, and the dining area.
She lords over the kitchen as a famed chef might, but from a seated position.
I hop on over to follow her, asking her to get up, because there is nowhere for me to sit.
“Do you want to walk?”
“No,” she responds plainly. The nurse, caregiver and other residents laugh.  I laugh.  Mom out and out falls out of her seat she is laughing so mightily.
When she is finished with the giggles, she does however stand up.  I guide her down the hallway, as she reads out the names on the doorways.  “E. Swiss helm,” she stumbles, attempting to pronounce the last name.  “Now what is that?”
First, I try to articulate the name. “Its Swisshelm, like you know the head of the Swiss.”
She looks at me like I am that one who has lost her mind.
“What is that?”  and she yanks on my arm until I can properly explain the last name.
One more shot at humor. “Its an elm. Like a tree.  Only its Swiss.”  This explanation she believes and then starts to laugh, this time holding her stomach.
She still hasn’t stopped chuckling, as we stroll down the hall, and towards Coffee Hour.  She enters the room, and makes her entrance grand, by reading whatever is written in the board, “Participating in Meaningful Programming Moments at Arden Courts.”  I have heard this before, about a thousand times.  I am going to suggest an LED sign in its place, so the wording can be modified daily. I am always making suggestions for improvement, given the time I spend with Mom at Arden, and the lack of diversions while there.
The table of residents stop to listen to Mom read, then immediately continues with their parallel conversations, unimpressed.
Mom reaches for my arm again, “C’mon, let’s go down here.”
We make our way to the far end of the room, where she can observe the Black-eyed Susan garden that has yet to sprout.  I pray they planted other flowers in there too this season, just to mix up my view, not necessarily hers.
She turns from the rain riddled window.  The male residents in the room, all four of them, are positioned at this end.  She motions towards E., a decidedly younger male with round eye glasses and curly hair. “Hey, look at that one.”
“That one, Mom, what are you talking about?”
She has never spoken of an interest in any men, other than B.’s grandson who often appears in suit and tie, carrying a bag of Burger King French fries. And he she notices, mainly because she wants some of his fries.
“You know, that one.”
Not only is Mom showing interest in a male, but she is continuing with a line of thought, despite distractions all around.
“Yeah?”
Mom nudges me with her elbow, and raises her almost nonexistent eyebrows, “Yeah.”
We chuckle together, and a roomful of eyes cast their sights upon us, hurt to be left out of a joke they wouldn’t understand.
I situate Mom in chair near that end then tell her I have to leave. She no longer laughs, curses at me instead.  I walk out with my head held high, despite the reprimand just received.

Amazing moments still transpire in Mom’s life, with or without caffeine. Amidst the backdrop of an ordinary routine, I sometimes miss these singular moments.  But they are there, however fleeting. 

3/19/2014

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The Face of Fall – A Prose Poem

Leaves of red maple shoot up in flames, against a towering white picket fence.  My mother looks out on them with wistfulness. She begs of me, Come here. Look. She points assertively at the trees.  And that blue, blue sky.  We marvel together for a moment.  Then she begins to count, One, two, three.  Three, she says again with pride, as she turns to me.
So, I think, let me take her out sometime. Drive her through woods or down my home street.  Show her more leaves. Leaves she made my father pile and bag. She never handled a rake. I can’t imagine her long slender fingers, which tightly rolled nuthorns and other delights, have ever wrapped a rake. But certainly, she jumped in mounds of oak and maple, when they were piled high.
I arrive one Saturday, ready for our drive. I have supplies in my car, in case of incidents I used to expect with toddlers, and now plan for with my mother.  I have a few hours space on my schedule. We have all day, I tell her, when I find her. 
She is in Jerry’s room, seated in his rocker chair, watching an old Lawrence Welk show.  There is no cable – someone must have pushed a button on a video player.
I get her to rise. She follows, but that only lasts for several steps. She wants to turn away from the main door. I let her lead for sometime, and she pulls me over to the bulletin board.  Arden Courts News Center, she draws out. See, I told you.
And when she reads, I am supposed to answer, Yes. She is waiting expectantly, a pupil awaiting approval from her teacher. I am anything but.  I miss my clue this time.  She yanks at my arm again. Rereads the headline.  Pushes my arm away. Walks down her corridor away from the exit.  We are not going for a drive today.
Halfway to her room, she stops and stares, I don’t know what to do.  I am lost for a minute, and then I comprehend. She has had an accident. They are happening with more frequency.  Recent medications are speeding up her digestion.  Or is it the disease?  In this I always wonder, am I witnessing the end?  Will I know it, when she is in it?
We toddle to her room.  I struggle to remove her clothes, clean her body. This does not come without pain and heartache. For she often slaps me when she is in pain or shame. When our task is complete, and she feels comfort, my mother reaches out to touch my cheek, and says, I love you, honey.
My name is not at the tip of her tongue. Most names are not.  But honey suffices.  After accidents, embarrassment and exhaustion, she often wants Sinatra and sleep.
I help her to bed. She never sleeps beneath her sheets, as if  preparing to rise at a moment’s note. 
I’ve got you, Frank starts out. And Mom replies, Under my skin.
I’ve got you, he says again, Mom answers, Deep in the heart of me.
The call and respond endures.
I’d sacrifice anything come what might.
For the sake of having you near.
As if she could finish any sentence Old Blue Eyes ever began.
I pull the green afghan up to her chin. Her arms circle around me, and mine, her.  I look deeply into her puffy eyes as she sings herself to sleep. Her childlike face, beaming. Not at me. Not even at Frank.  But at Autumn’s musical of leaves changing colors. Her lit face a reflection of God’s show.
11/4/2013

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