I was raised in the shoe family of Januzzi's Shoes. The ditty on the radio in the 80's went something like this: "All over the street, to happy feet. Get your shoozies at Januzzi's."

For some, they put on their writer's hat. For me, I wear my writer's shoes.


Friday, February 20, 2015

What to Give - Easing the Transition of Care

So many factors determine the ease with which a loved one makes the transition into long-term care a successful one.  First, the health of the individual in question, mental and physical.  Second, making her surroundings comfortable, with familiar items flanking her left and right.  Third, the culture of the care home where the loved one is now residing. Finally, the effort family and friends put into making themselves and loved ones feel as if they now are simply part of a larger family.

This thought occurred to me, as a lesson learned over time. I have been managing my mother’s care since she transitioned into a care home in July, 2012. Mom went into the care home, a grieving, but not remembering wife, with little or no physical challenges, as she had already put cancer, G/I and thyroid challenges behind her. 

Mom entered her next place surrounded by the fuzzy green afghan she used to cover up with while napping on the crème couch at home, a body pillow for her security at night, something she could cuddle up to, and a baby doll, which she can still lavish her love upon when she needs. 

While the culture of her first care home was less than desirable – for where she was in her disease - I soon moved her where she settled in promptly because she could wander outside spontaneously, attend community center events, including watching How Green Was My Valley if she wanted, and be herself with no restrictions.

But it’s the final point I contemplated, when I entered her care home for Ash Wednesday services. I had called earlier to inquire about timing of the service and was told three-ish because who adheres to a schedule when time is all you have.

About fifteen residents were watching  a short film about Burma shave – “Dinah doesn’t / Treat him right / But if he’d / shave / Dyna-mite! / Burma-shave,” when I arrived. The pastor showed up at “three-ish” after braving snow and close to zero wind chill temperatures.

Pastor P. entered a room full of willing and not-so-willing because they kept forgetting participants, ready to share in the glory of the Lenten season.  He knew and greeted each resident by name, and for the most part, recalled the names of family members.  I glanced around, surprising myself by acknowledging the names of those residents as well.

We had formed our own sort of family at Mom’s care home.

It’s a blend of work-family life.  Work, because when loved ones arrive to visit, while it should be pleasureable, none of us have tricked ourselves into believing it will be all pleasure. There are many painful moments and pain is work.

Work because I sometimes spend more time conversing with other’s family members, swapping stories about their loved ones, as we are only the mouthpieces, the sieves through which the essence of our loves one’s life gets distilled.  Work because getting to know the staff, their families as they know mine is relationship-building, and relationships take effort and time.

Pastor P always delivers on-point, audience-specific sermons, and usually includes a focus on thankfulness. When he opens up for the floor for the residents to speak of their gratitude, I am heartened by the responses. A few mentions involve whatever the weather is producing outside, whether sun or wind or rain. But the underlying message is residents still are moved by what is happening outside of them. My mom occasionally mentions the wallpaper border, for which I doubt she is thankful for, but she can point to it, and make commentary on its presence. It’s her contribution.

Most of all, one resident will inevitably call out, “Each other.”

“That’s right,” Pastor P will agree and extend his long arms, and as if scooping us all into his arms. “We are family. We are all family here. We take care of each other.”

The employees care for our loved ones. Earlier, the activities director had shared with me a photo of Mom, a photo which I know took great pains to capture, because Mom is like my dog, she doesn’t like to have her picture taken, she doesn’t understand the purpose.  But the director did capture a photo worthy of going viral.

Residents and loved ones look out for each other. Many times, my greatest joy comes in observing the residents in how they treat each other, a touch on the arm, a pat on the back, and encouragement to walk down the hall, with no idea where they are going.  Many times, my simplest joy comes in watching other families and loved ones interact with Mom, or vice versa, my interacting with someone else’s Mom, as if I am somehow giving respite to the family who is not there, still connecting.

And families give back to the caregivers.  I have brought in Servatti cookies for Mom’s corridor, bought Chipotle lunch for the employees as a thank you and made the official family cookie, pizzelles, for the Sinatra impersonator party.  My mother does not get better care because I am bribing the staff. Instead, I am thanking them, and thank you’s go a long way in boosting the morale so employees can be at their best for all residents.

So, after a loved one has settled in, its time for families to do the same.  Fix yourself a cup of coffee, have a cookie (but not all). Watch a movie, sing along with the sing-a-longs.  Attend communion service. Play Outburst, alongside the residents. Ease into your place in the family of care.



Friday, February 13, 2015

Before We Fill the Chairs












Before we fill the chairs,
let us give thanks for the words, the gifts of a writer’s life, that has brought us to this point, to give shape to the darkest forces and defeat them.

Offer gratitude for the healthy relationships that support our rights to be women, to choose as women, to live as women. For the nurturing spaces which give rise to such rights.

Before sitting,
let’s call to mind young and old, rich and poor, addict and alcoholic, foreigner and the homebody, and all genders and races are counting on us to act out in the world, and not just on stage.

Recall that not every woman can speak for herself. Some are in dark places where it is not safe to come out of hiding.  One may be in dark place where it is safe, and she still will not reveal herself.

Before we take our places,
remember it is more than the old woman who never talks about “down there”, or the transgender female who is punished for carrying a purse, or the names for the vagina.

Before we sit in the chairs,
let us remember how to stand.


AJW
2/13/15




Wednesday, January 07, 2015

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.



Saturday, October 25, 2014

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.


Thursday, October 02, 2014

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.