Tag Archives: writing

Organizing a Mind – Writing Our Lives as Caregivers Workshop

Writing Our Lives as Caregivers 8-2017 (1) (1)-page-001When my mother began her slow waltz with dementia, I was living in southern Ohio, dancing in new love and blending families. Mom still resided up north, near Cleveland. Each time I visited, I had witnessed various versions of a mom I didn’t recognize. Each time I drove back to Cincinnati, I was steeped in the shadows of what was soon becoming, or had already become, the darkening of her memory.

The story of how she got from there to here has been the subject of poems, blogs and novels. But the narrative of writing as a tool to forge a new relationship with my mother is a story that is boundless.

Not long after I accepted (maybe not really) Mom’s stage in life, I had been listening to a podcast about an Alzheimer’s writing circle, begun by a well-known psychologist, Dr. Alan Dienstag, and famous novelist/playwright, Don DeLillo. I was prompted to undertake the same.

One day, sipping coffee with Leigh, a good friend from Loveland, I mentioned the prospect. She dropped a hint into our conversation.” If you ever do that, let me know. I might have some time to help.”

Thus was born Found Voices, a writing circle for individuals with mild to moderate cognitive loss who lived at the Alois Alzheimer’s Center in Cincinnati, a facility renowned for their approach in caring for residents, and also renowned for their costs.

The program director not only welcomed my pilot program. She connected us to the executive director, who promptly paid us well for such work. Little did either know, at the time, I had proposed the program to alleviate guilt I was accumulating, while not traveling the miles to see Mom.

For three years, Leigh and I plotted and planned out themes for our circle: Flying and planes. Summer. School. Baseball. Home. Love.

The participants who were with us those three years became dear to us. Mary Lou, Willhemma, Betty. Dotti. We embraced their lives and their hearts. Whatever life those residents had left to give, they gave their all.

That work that propelled me forward to write about my own mother. (www.findyouinthesun.com) That work became the seed in a relationship with Pauletta Hansel, Cincinnati’s Poet Laureate, whose own mother experienced dementia. And the two of us arrived simultaneously at the intersection of art and life. We have decided to stay there a while.

Last summer and winter, through the Alzheimer’s Association of Greater Cincinnati, we offered sessions for caregivers to write and share their musings and mutterings about their loved one experiencing Alzheimer’s or dementia. Or to write and share about the struggle in their own lives, as they contemplate a future without their loved one or a future that might closely resemble that of their mother’s, like I often do.

The poem below was excerpted from Pauletta’s blog, from our summer workshop.

The Alzheimer’s Association of Cincinnati has been enthusiastic in their support of our work. We will offer three caregiver workshops, two in coordination with the Memories in the Making program, and one trial run with professional caregivers, because they too have stories to tell, especially when they sit in for a family who can’t or won’t.

FullSizeRender (34)I have made a life out of my mother’s life. Not her past one, or ones, though I don’t know if she has nine or not. But the life I made has been created from her present one. It’s not the life I planned for either of us. My mother was the extraordinary organizer. She would have never tolerated an unorganized mind. But she tolerates me. And in the interim, I help others organize their mind and their love.

FREE workshops August 12, October 21 & February 10th. Sessions begin at 9 a.m. Each session is hosted at a different venue. Check the website for details.

 

This poem is a weaving together of snippets of writing from the participants of Cincinnati Poet Laureate Pauletta Hansel’s workshop at the Alzheimer’s Association of Greater Cincinnati on July 16, 2016. Innumerable residents of Cincinnati are caring for loved ones with dementia —mothers, fathers, husbands, wives. Their experiences of tenderness and loss are all too often untold. Credit to Pauletta Hansel for the weaving. Read more.
For As Long As We Can: Writing our Lives as Caregivers

There is much more hurting than healing
in our lives right now.
An incredible sadness.
Robbed of all this time,
many years, with my mother.
I let go of the colorful gal I once knew;
now her words cut through me like a machete,
leave a hemorrhage like no other.
All this before I even sit down.
I want so desperately to believe
God has a miracle for my dad,
for my beautiful Gina, in beautiful Bermuda—
how I would love to take her again,
away from the tiny world she knows
—and the bitterness of that impossibility.

I hold to every word, to every syllable,
to every streak of black
remaining in Mom’s soft white hair.
I know I am still her baby girl.
I cling to my old memories.
I don’t want it to change, but it does.
But then, a conversation—mother and daughter.
Mom hunched her shoulders
and walked in a silly way, making me laugh.
She doesn’t need that jacket on,
but she’ll wear it anyway,
singing “76 Trombones” and I join in.
It takes her a moment to connect
my place in her room
with my place in her life.
I know she is in there.
She looked in my eyes; I let her love me.
Mom was back,
but not for long.
The touch of your hand—unnerving,
unbounded by time.
At Mirror Lake in Eden Park
the air had cleared,
the colors of sunset filled the western sky.
Tiny blue gills swirled alone in lazy Van Gogh circles.
Heads together, giggling like conspirators
and wishing for more.
I am still comforted by your touch.
Moments—come and gone—
that would not have been
had we not been present.
Engulfing moments unborn, unknown by us.
A salve to put on the wounds part—
the baggage of the day
and my beat-up body,
the parts that broke,
under the pressure of loneliness.
I breathe deep until the next time;
I sink into the car
and think about doing it again tomorrow.
The contrast—the leaving,
the spent memories so different,
so contrary, so final.
Or maybe not final,
maybe this too will change.
I hold her strength, yet I cannot find her.
The joy we had, the hope
and promise of things to come.
I want to believe.
I cling to these prayerful words:
Relax, you are safe.
I will be here for you—not forever,
but for as long as I can.

From participants in Writing Our Lives as Caregivers
with Pauletta Hansel, Cincinnati Poet Laureate, and Annette Januzzi Wick
Alzheimer’s Association of Greater Cincinnati

Advertisements

2 Comments

Filed under Uncategorized

The Dog Ate Some Pot (and Other Excuses for Not Visiting)

fullsizerender-65Hey Mom,

You know, Italians ingest a healthy dose of guilt. When we were babies, you offered us biscotti for our teeth and guilt for our souls.

Along with four sibs, I was raised with a guilty conscience, and even as you have aged, I justify my actions based on a sense of loyalty – and guilt.

After your rash of infections, I found myself rather inattentive to your needs. So, I thought I would write to tell you why.

  1. My dog ate some pot. No, really, he did. He licked a patch he found in a little pocket park in the city, spent the night in the Veterinary ER, and rebounded the next day.
  1. His stomach did not. For two weeks, I cooked more meals for the dog than for Mark and me. I kept him on a tight leash or in his crate. I did less work when Davis was a newborn.
  1. I was there but you were sleeping, so I cleaned your closets. You answer, “But that doesn’t count, because I didn’t get to tell you, ‘No, no, no,’ or crush your hands in a death grip while we walked around the hallways, or just throw cookies at you.” Yes, it was a beautiful moment where I could just love you while Sinatra crooned on the CD player.
  1. I had to go to Washington to march. See, we elected this president who likes to tweet about random things not related to his actual job of governing. “Tweel?” you asked once when you heard it on TV. “Tweel?” you asked again. Finally, I spoke into your good ear and moved you off the topic.
  1. I participated in boot camp. No, it’s not a military thing at all. And actually, I didn’t go away, just attended boot camp online – for my manuscript. There’s a boot camp for everything these days. Boot camp baby food making, boot camp opening scenes, boot camp how to ride a bike on city streets.
  1. I had to stand up and speak out against sexual violence, basically, stand up for women’s rights. “But, we did that already,” you question. And I say, “Yeah, but we should have been doing it every DAMN day until the violence ended, and its still here.”
  1. I had to walk a few neighborhoods because I wrote something stupid like, ‘I’m going to walk, then blog about all of Cincinnati’s 52 neighborhoods before the next mayoral and council elections. One week, one neighborhood.’ Only I started four weeks late, and its winter, and the dog.
  1. Because I visited you on a Saturday, though I usually come on Sunday. My timing must be messing with your biorhythms – since you don’t get a chance to yell at me and get it all out – but consider the timing is messing with my biorhythms too.
  1. I traveled to Florida to see your granddaughter, my niece. She needs connection to our family, whether she likes it or not. Plus, she’s awfully adorable and her moon face and her, well, let’s just say, bossiness, reminds me of you.
  1. Because one day, I stopped writing to grocery shop. I was so engaged in the scene left behind, that after shopping, I returned home and only later, I discovered your supplies in the back of my car. I was horrified. I had planned to see you that day, and you, the thought of you, had slipped my mind.

I’ll return to our regularly schedule programming soon. However, in missing you, I learned how guilt is quite the motivator.

But, you already knew that.

Love,

Me

4 Comments

Filed under alzheimer's, Uncategorized

Writing as Daughters, Healing as Writers

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

For As Long As We Can: Writing our Lives as Caregivers

There is much more hurting than healing
in our lives right now.
An incredible sadness.
Robbed of all this time,
many years, with my mother.
I let go of the colorful gal I once knew;
now her words cut through me like a machete,
leave a hemorrhage like no other.
All this before I even sit down.

I want so desperately to believe
God has a miracle for my dad,
for my beautiful Gina, in beautiful Bermuda—
how I would love to take her again,
away from the tiny world she knows
—and the bitterness of that impossibility.

I hold to every word, to every syllable,
to every streak of black
remaining in Mom’s soft white hair.
I know I am still her baby girl.
I cling to my old memories.
I don’t want it to change, but it does.

But then, a conversation—mother and daughter.
Mom hunched her shoulders
and walked in a silly way, making me laugh.
She doesn’t need that jacket on,
but she’ll wear it anyway,
singing “76 Trombones” and I join in.
It takes her a moment to connect
my place in her room
with my place in her life.
I know she is in there.
She looked in my eyes; I let her love me.
Mom was back,
but not for long.

The touch of your hand—unnerving,
unbounded by time.
At Mirror Lake in Eden Park
the air had cleared,
the colors of sunset filled the western sky.
Tiny blue gills swirled alone in lazy Van Gogh circles.
Heads together, giggling like conspirators
and wishing for more.
I am still comforted by your touch.

Moments—come and gone—
that would not have been
had we not been present.
Engulfing moments unborn, unknown by us.
A salve to put on the wounds part—
the baggage of the day
and my beat-up body,
the parts that broke,
under the pressure of loneliness.
I breathe deep until the next time;
I sink into the car
and think about doing it again tomorrow.

The contrast—the leaving,
the spent memories so different,
so contrary, so final.
Or maybe not final,
maybe this too will change.
I hold her strength, yet I cannot find her.
The joy we had, the hope
and promise of things to come.
I want to believe.
I cling to these prayerful words:
Relax, you are safe.
I will be here for you—not forever,
but for as long as I can.

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

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

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

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

1 Comment

Filed under alzheimer's, dementia, healing, Uncategorized, writing

Writing and Healing as Daughters and Writers

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

For As Long As We Can: Writing our Lives as Caregivers

There is much more hurting than healing
in our lives right now.
An incredible sadness.
Robbed of all this time,
many years, with my mother.
I let go of the colorful gal I once knew;
now her words cut through me like a machete,
leave a hemorrhage like no other.
All this before I even sit down.

I want so desperately to believe
God has a miracle for my dad,
for my beautiful Gina, in beautiful Bermuda—
how I would love to take her again,
away from the tiny world she knows
—and the bitterness of that impossibility.

I hold to every word, to every syllable,
to every streak of black
remaining in Mom’s soft white hair.
I know I am still her baby girl.
I cling to my old memories.
I don’t want it to change, but it does.

But then, a conversation—mother and daughter.
Mom hunched her shoulders
and walked in a silly way, making me laugh.
She doesn’t need that jacket on,
but she’ll wear it anyway,
singing “76 Trombones” and I join in.
It takes her a moment to connect
my place in her room
with my place in her life.
I know she is in there.
She looked in my eyes; I let her love me.
Mom was back,
but not for long.

The touch of your hand—unnerving,
unbounded by time.
At Mirror Lake in Eden Park
the air had cleared,
the colors of sunset filled the western sky.
Tiny blue gills swirled alone in lazy Van Gogh circles.
Heads together, giggling like conspirators
and wishing for more.
I am still comforted by your touch.

Moments—come and gone—
that would not have been
had we not been present.
Engulfing moments unborn, unknown by us.
A salve to put on the wounds part—
the baggage of the day
and my beat-up body,
the parts that broke,
under the pressure of loneliness.
I breathe deep until the next time;
I sink into the car
and think about doing it again tomorrow.

The contrast—the leaving,
the spent memories so different,
so contrary, so final.
Or maybe not final,
maybe this too will change.
I hold her strength, yet I cannot find her.
The joy we had, the hope
and promise of things to come.
I want to believe.
I cling to these prayerful words:
Relax, you are safe.
I will be here for you—not forever,
but for as long as I can.

 

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

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

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

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

Leave a comment

Filed under alzheimer's, Uncategorized, writing

The Courtship of Writing

relationship-3(With apologies to my readers, as this piece was written as a distraction from Mom’s current hospitalization, and not about it)

 

First, you are met with a warm sensation as words wash down your arm, through your pen, then leak everywhere onto the page. Forget the runner’s high. There is a writer’s high that mimics the rush of dopamine, adrenaline and norepinephrine from falling for words. Writing from your insides spills out. You scribble furiously. You have finally found what your soul wants to say.

So, you write. At all hours. You eschew affordable housing workshops and Argentinian happy hours and sometimes, even your faithful, yet always pouting, Cavalier. You only want to be with your words. You have unleashed an ardor onto the page that no man or woman has ever before been known to capture. You cannot sleep because these words sprint instead of dance in your head. You rise, and inhale the morning’s first cup of burnt beans, rush to the door and gulp in the morning dew, energized despite so very little sleep. Your thoughts immediately turn to streams of sentences that must be imprisoned that very instant. Everything is RIGHT NOW.

The fever has you in its grips, infects every part of your being. You write about three dimes accumulated in the fountain you will collect in a mason jar, about your mother and how she clutches her rosary as if holding onto to heaven, about dahlias that dance in the northwest wind. There is not one part of your life that has not now been touched by the way you are in love with words.

All too soon comes the reckoning. You share your words, perhaps online or an opinion page. Your friend remarks, “I don’t get it. Why would you say that about an onion, stripping off years of the garden’s stink?” And you fight, ten rounds with your conscience. Doubts and regrets are suddenly keeping vigil with you at night. You wanted validation, not criticism. You wanted inspiration not condemnation. You wanted a soul mate.

You are in pain and thus perform an entire scan on your body of work. You look for bumps and bruises, or some internal bleeding. Anything that would have indicated writing had consumed all of you. You turn away from the Italian Ladies desk, the yellowed, torn page. You switch off the words that have been running like a spigot through your senses. Your synapses cease snapping. You stop receiving the long-distance appeals that originated from your desk. You will no longer be accepting those calls. You disconnect.

But there comes a time, when you are pulled back. The tug comes on a night when your friends are drinking margaritas with salt or listening to a Pulitzer Prize novelist read at an ancient library. You are entombed elsewhere. You cannot breathe. You can no longer say, “No.”

You return to your love, fall in and begin the long slow waltz with words again, more committed than ever. You begin to notice your writing has plunged into the deep end. You can mine a body for aches you didn’t know were there. You write about breaths last encountered and hearing by heart, not by ear.

Finally, you are ready to accept that long-held belief. You have secured something obligatory. This is the engagement you have been waiting to happen. The life you almost walked away from.

You are pronounced woman and writer.

But then, the anticipation grows greater, the commitment more difficult to endure. You are expected now to tend with compassion and craft with care. There are others involved now. You must think of them, and what they will think. You reflect on the days when you didn’t have to care what others thought. You knew, you just knew.

But this, this is the beacon you have followed, the elusive beam emanating from a lighthouse reachable only by rowboat or swim, neither of which you will attempt on a dark and stormy night as you once did when young. And yet, you gunnel and stroke, then paddle and butterfly.

And after ten years, your pace slowed, you find comfort in a bulging waistline rounded by poetry, prose, blogs and musings. You forget how thirsty you once were for words, forget how parched you once felt when you had gone days without words swirling round. Something else has satisfied a thirst once only quenched by words pulsing through veins.

In the long stretches of winter, you roll up in a cocoon of quilts, reach for your beloved, warmed by the routine rivulet of writing that is no longer frantic or frenetic. Words that no longer poke at you in the nighttime, but carry peace to you like a cup of lapsang souchong tea. Words that rock you to sleep.

 

*Note: While not about my mother, this piece was written as a distraction from her current hospitalization, so…..

Leave a comment

Filed under Uncategorized