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, June 19, 2015

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

Transitioning Loved Ones Experiencing Dementia

Emails downloaded while my legs wobbled. I had just climbed a mountain - and descended one.  A 14,000 ft. mountain, Mt. Kinabalu, in Kota Kinabalu.  We returned to our hotel, and a spate of emails and texts dinged during our first brush back with the Internets and reality.

The first email I read was from my sister, Beth. I had tasked her with overseeing Mom’s care. She was also the executor of my estate, should anything happen to me, in particular, while I would have been, say, climbing a mountain.

Before leaving, I had snapped a photo of my office closet, where I kept family files, and sent the pictures to her. “Here is where Mom’s files are,” I wrote in one text caption.  “These are my personal files.” I wrote for another.

She laughed at the time. I did too, recalling how she had toted my purple folder with all my father’s medical information, the last time I traveled overseas to Ireland. My father had never recovered from a nasty winter tumble, and spent his June and July in and out of the hospital and rehab. Thus, when I had left for Ireland, he was out. While I was in Cliffs of Mohr, he had gone back in.

The irony of me leaving again had not been lost on either of us.

May 23, 11:07 p.m. Cincinnati time, May 24 11 a.m. Malaysia time was the date stamp. It was now six hours later than when Beth’s email was sent.

“Hi all. Hope you’re having a good weekend. Just wanted to take a moment to update you on a few things.”

“Mom had a seizure and is at ER.  This JUST happened so details are sketchy.  I am on my way to XX Hospital and can provide more of an update once I know more.”  

I panicked and desperately wrote back, not knowing how far behind the time (or ahead of it) I was.

Oh wow. Just now reading this. As we were on a mountain climb for a few days.”

“Is Mom OK? I can't believe this happened while I was gone.” 

I thought back to the mountain climb earlier that morning. I had been awake since 2 a.m., trudging up sheared rocks by 3 a.m., near to the peak at five a.m.  I was whispering to the wind at that time, while also cussing at my daughter, Shannon, for getting us into this, and at my husband, who moved nimbly ahead of me, then would sit to wait. Move, then wait, instead of climbing lockstep with his beloved side by side. I quickly learned who was my parnter in the race to the sunrise. 

Beneath my scant breath had been a prayer to return to Mom.  Sure, she was 87. But that didn’t mean I wouldn’t have wanted to spend any last days with her. It is a constant fear I have now. That I’ll miss her passing away from me, two travelers on opposite bound trains.

Emails and replies went back and forth throughout the week, until I received this one. “Mom is fine, just fighting a fever now.”

I had been battling against wanting to flee back to the states, when I learned my sister was fighting another battle.

“Mom is fine, almost ready to go, but the hospital wants her to go to rehab.”

What? No. They can’t. They can’t do that. Don’t let them.  I was spewing words before even typing them. Didn’t they know, someone with dementia cannot just be moved around like pieces on a chessboard?

No, they didn’t.

“Who is they?”

“The doctors and social worker.”

I was baffled and aggravated by doctors and social workers who, employed by a hospital directly across the street from two long term care homes specializing in memory care, didn’t understand the consequences of moving Mom to rehab before returning her to her care home if it was unnecessary.  The hospital was always willing to take in elderly patients, most likely to pay for their new wing, but not willing to expend the time, energy and money to train staff properly, on the challenges of transitioning someone with dementia.

While sometimes, the decision to transition a patient to skilled nursing/rehab is logical, in particular when a physical disability, such a broken bone is in play, there is no excuse for social workers and doctors who deny the rights and wishes of not only the patient and family, but in this case, the staff from Mom’s care home.  How brazen, how arrogant, how utterly ridiculous, to protect the hospital’s readmission rate, they simply shuffled patients like a deck of cards, and moved them to the next pile. A magical disappearing act.

We should be way ahead of this curve by now, with all we know about dementia. Hospitals treating the elderly should have passed this curve years ago, and if not, then they shouldn’t be receiving reimbursements for Medicare.

Families should take heed to fight like hell, enlist the help of the care home staff, to keep a loved one in their most recent environment after a hospital stay. My mom, I was told, was crabby at times, fending off PT.  She had strangers telling her what to eat and when, peeking under her dressing gown.  I would have been crabby too.

Eventually, the hospital relented, but only after constant intervention by the staff at Mom’s care home. I was so grateful Beth had the strength to battle in the same vein I would have, with mettle and might. And I was grateful Arden Courts had lobbied on Mom’s behalf, for her to return where she was known and loved.

I returned to the states safely. Mom returned to Arden Courts safely.  Both of us on the same day, technically, depending on time zones.

I committed to visiting Mom every day for a week, to gauge her recovery, to remind myself of what I had almost missed. Mom returned home on a Tuesday, and I found her Wednesday morning, sleepy, but smiling.  I sat, and played a few Sinatra songs for her, her eyes opening and closing whenever the beat was too loud or when she knew the refrain.

The resident supervisor came into the room and together we sat on Mom’s bed, got her to drink a little Gatorade and discussed Mom’s condition, and her new meds. 

“I went over there after I got off work, and told them, they should return your Mom to Arden.”

Even the activities director later confessed, “I was insistent your mom come back to her home.”

The compassionate, wise staff of Mom’s care home were all in, why wasn’t the hospital?

For each day onwards, caregivers continued to track me down, telling me how delighted they were to have Mom back, how relieved that she hadn’t been placed in skilled nursing care.

And each day, she moved and wobbled and ate, until finally, she was initiating movement into the courtyard to soak up the sun.  At day’s end, I would share with my husband, “Mom is so good. Either she is getting some great meds, or she is just happy to be home.”

I did research the new medication Mom had been prescribed, and discovered in some instances, the drug actually slowed down dementia or Alzheimer’s disease.

But her recovery had come so quickly, more so in being surrounded by familiar faces and objects, recognizable words posted on signs, “Pull door until alarm sounds.” and “Mechanical” and “Arden Courts News Center.”

One day, Mom and I performed our standard routine, when helping her out of a chair. “Mom, let’s get up, ready? Uno, due, tre.”

We repeated together, “Uno, due, tre.”

She rose up, unsteady, then gradually fell into my arms.  I held her for so long, this little woman of so much strength and resilience. She buried her face in my neck and patted my back, as if, as if we had been young again, both of us.

When I finally pulled back, tears pooled in my eyes. “I thought I was going to lose you, Mom.”

She looked at me strange, ran her hand along my cheek, swiped my tears onto her black, polyester pants, and said, “I love you, too.”

Mom heard only what she wanted to hear. She was back.

Saturday, March 28, 2015

Revenge at the Hair Salon

Where is revenge best served, when it involves your mother, and she has dementia?

At the hair salon.

For years, my mother visited the beauty salon in Amherst to “get her hair done.”  Occasionally, she even toted five kids when tired of giving the home perm or snip of the bangs.

Mom, like every woman, had always been concerned about her hair. She hadn’t inherited the long, flowing black locks of many Italian beauties. Her hair was brown, I think.  Her strands were thin and straight, I think.  She pursued salon treatments and home solutions so often, I don’t have an exact recollection of her official hair color and style.

Many times, she descended to the bathroom in the basement, where wafts of coloring dye and perm solution rose up from the steps.  She appeared hours later, her hair sporting a color different or shape from when she had descended.

If Mom arrived home from the salon, and one of us gave her a compliment, she was quick to note, “Oh, the curls are too tight.” Or, “Its too dark a shade of brown.”  If the weather was rainy, Mom covered her head in a black or red or gray nylon scarf and asked my father to drop her at the door.  Dad complained, but always obliged.

When I hear, “Oh, my hair,” I can still conjure up Mom’s voice in my head.

Hair was a consistent topic of conversation in our household, in particular when there were four girls fighting over the bathroom mirror.  In our second family home, the kid’s bath was strategically designed for two mirrors, hence cutting in half the time the bathroom would be occupied by a girl. The intent was solid. The strategy failed.  However, my mother did succeed in keeping us out of her bathroom and away from her mirror.

Mom’s hair gradually turned towards lighter shades of gray, interspersed with threads of white.  When dementia finally took charge of her mind, she no longer took charge of her hair. Days went by before she washed her hair. Or, her hair remained matted in place with Adorn hairspray, which I thought had no longer been manufactured, but perhaps my father had found a stash on the back shelves of Drug Mart.

Mom, in her dementia, still makes comments about hair. Only now, they are directed at my coif and me. Mom’s statements are usually derisive, but she is only returning the favor of oh so long ago, when one of her children taunted about her changing hair color and style to match the times and her moods.

In Mom’s care home, a wonderful woman named Carol arrives twice weekly, to wash, cut, color, curl the thinning, fading hair of the residents, mostly women.  However, Carol’s challenge is somewhat different than her former days as a stylist. Her clients now abhor the water.  When once, women might have tilted their hair and sighed at the rush of warm water running through their scalps, now these residents fear water, as a baby might, forgetful, or unknowing of its power to cleanse and heal.

Once a month, I ask caregivers to ensure Mom “gets her hair done.”  I usually call in my request on a Monday or Tuesday, after visiting with Mom on a Sunday and noting her needs.  Last Sunday, I was out of town. So, I visited with Mom on Tuesday, and asked for the favor.  The caregiver on duty said Carol would fit Mom in that day.

Mom and I decided to stroll the corridors and check out what was happening in the community room. We came upon Carol waiting outside of her salon with her list of appointments.  She suggested taking Mom then.  Heavy sigh.  I had hoped to skip that portion of my visit with full knowledge of Mom’s distaste for the exercise she once considered a luxury.

I directed Mom into the salon chair with assistance from another staff member.  When we attempted to release the chair back, Mom’s shrieking began. 

“No, don’t do that to me!”

“Its Ok, Mom, just hold my hand.”  But she yanked her hand away from mine.

“Now, just wait a minute,” she kept screaming. 

At once, caregivers from down the hall came running to the salon.  “I knew it was our Jeanie Beanie,” a few of them noted, using one of her many nicknames given to her lovingly.

I sat back as caregiver after staff member encouraged Mom to lean back in the chair.

Mom repeatedly shifted from happy to frustrated state, calling out, “No. You’re not going to the do that to me.” And pointed her finger, her mighty, mighty index finger at – me. Yes, this was once again my fault.

Mom yelled like a little child with water dripping down her eyes, as if Johnson’s Baby Shampoo had never invented the slogan, No more tears. 

Carol stood in the background. “I’m sure happy you’re here today, she usually gets mad at me.”

And I was thinking, This is the last place I want to be.

Carol and I eventually gave up on the notion of running water through Mom’s hair. Carol would have to perform her duties the old-fashioned way, by hand. We raised the chair back up and Mom appeared content.

I reached out to hold her hand. “Well, Mom, this is revenge for when you scrubbed our scalp and held our heads over the stationary sink, you know, pouring hot water from the measuring cup.” 

Plus, I always thought Mom had over-applied Tame conditioner to my hair, but I left the past in the past.

Mom began to laugh, a high-pitched laugh and the remaining staff and caregivers moved on. Soon, H., another resident came along. H. loved Etta James. Carol and I both encouraged H. to sing At Last, which in turn, motivated Mom to sing.

We all began listening to a little Frank Sinatra, Carol amazed by how his voice, the words calmed Mom. 

Mom sat patient, while the stylist and I had frank discussions around music and how more of it should be brought into the lives of the residents. She listened along, adding her two cents. “That’s right.” Or “How bout that?” 

Mom belted out a few phrases, always completing the last lines of the song. I glanced away from Carol and back to Mom, imagining her as a thirty-year-old Italian beauty, dancing in Cedar Point’s Grand Ballroom, waiting to meet a man while Tommy Dorsey’s band played.

Carol put the finishing touches on Mom’s hair using a little aerosol hairspray - for old times sake.  Mom squealed again and grabbed a towel to hold over her eyes, smashing the front portion of her styled locks.

The activities director offered to take a photo but Mom was restless as my dog when it came to pictures. She never liked having her photo taken.

“Oh, what are you doing with that damn thing,” she stated, grabbing at my smartphone.

“Remembering how beautiful you are,” I said, smiling.

She pushed me aside and walked on.

Ah, Mom could still exact revenge over me, any day.

Thursday, March 19, 2015

Are You Weary of the Query?

Questions and Lessons from the Land of the Query

There comes a time in your writing life when its time to publish, to put your novel’s package on paper. Think branding. Like Tide.

It was never enough to write a book to sell. Now you have to sell the book you wrote. You declined work, abstained from lunch, recommitted to caffeine. You discarded thoughts of becoming the next Cheryl Sandberg or Strayed.

You wrote the shitty first draft, and shitty seconds and thirds, because your concept morphed over time. Think Frankenstein. Or Play dough.

You chased family from the house by steeping lapsang souchong tea, which they claimed smelled like a tire fire. You closed the door instead. You made practice runs five, six, seven times, to show and not tell.

Now, you’re tired, and the biggest hurdle lies ahead.

You ask friends in the writing world and they advise to query an agent. Publishers are busy. You’re competing with bloggers who want a book in PRINT and celebrities who have celebrity platforms. You connect instead through an agent. And with DSL speed, you can disseminate queries with ease.

You learn it’s not enough to write a well-developed query, a succinct synopsis, a comprehensive outline, a long biography, and a short one. But your biography should include your author platform, which should include your Facebook, Twitter, and social media presence, which should include blogs you write and follow, and websites that relate to your platform. The circular logic makes you want to give in.

In your platform, you document how you have sold your soul, and how much is left for sale. The platform proves a) you are qualified to write this book because you already did, b) you will present well and not lapse into Pig Latin while giving a talk and c) you have people, other than your mother and mothers-in-law, who will buy your book and recommend it. Think influential, powerful, media. You’ve drunk bourbon with an early morning reporter. She counts. 

You evaluate Facebook friends, email contacts and Twitter followers as potential promoters for your book. But as you analyze the list, you find five names out of 327 that might have influence and wonder why you are friends with the other 322. You think of time saved no longer communicating with less influential types. 

When you have categorized life events into short biography, or long, you follow Twitter, Facebook and other social media for agent announcements and query contests. You follow agents who post using #MSWL (Manuscript Wish List), so you read up on hashtags. The second, you submit your 140-character pitch accepted only during 9 – 5 Central Time, at 7 a.m., EST. You decline to bid for an agent with proceeds going to a non-profit. You would like money dedicated to your interests, which feeds your platform, which surely the agent should understand.

Everything you say and do, including distinguishing yourself as a daily flosser, becomes your platform.

But it’s not enough to keep up with revisions, work in your field, teach writing, write about writing or generate blog posts which feed the monster of the platform. Now, you follow agents on Twitter, to learn what you already know. Make it shine. Make the first sentence intriguing. Work harder, faster, better. You should be at work, not on Twitter.

You begin querying. You discover agents ask for queries in different formats, in particular for online submissions. Place title + genre in subject line. Wait, what is your genre? Romance + Women’s + Book Club Fiction? Place title + word count in subject line. Place last name of your grandmother’s first boyfriend in subject line.

You research what to submit. Query letter only. Query letter and synopsis. Query letter and three chapters and short bio in body of email. Query letter plus synopsis plus first twenty pages, but send as attachment, or send as attachment and double space first fifty pages.

You note response times. Four weeks. Only if it’s positive. Four to six weeks, but if you don’t hear back, send a reminder. When Northeasterners have dug themselves out from underneath the last winter storm. Opening Day. Whichever comes first.

The online process is so different from printing and mailing a letter, where you review your package one final time because your eyes are old.

You hit the send button THEN spot an error. Or you have written, in a conclusion to one agent, what you said about another. Or the agent asked for the first thirty pages and you sent the first twenty. You accept the process is about attention to detail. But you used up your attention to detail in the novel. You have no reserves. Ask the dog, whom you forgot to feed in the morning.

But you admit, the process has made your book stronger. Your novel is told in alternating timelines and perspectives. You started with one POV, but after writing your query, you saw the logic of beginning with the second POV, and switched the order of the ENTIRE novel. 

You worked on the query and discovered what the heck the book is really about. Then you asked, do I like the theme? If not, which do I change, the novel or the query? And, do I have enough lapsang souchong?

Likewise, once you created a synopsis, you noted some events stood out. You revised the novel to reflect this. Or vice versa. You asked, how strong are the characters, how would they respond to the query process?

You miss waiting by the mailbox for rejection letters to line your office.  Instead, you receive a brief reply easily discarded by Gmail. Canned replies don’t offer the same incentive – you can’t burn them later.

You used to have brown-blonde hair, but you gave up on highlights. You hair is turning gray, in time for your photograph, though no one asked for a photo in your author platform.

Wednesday, March 18, 2015

What the heck if Ekphrasis 3-C?

Dear Poetry Friends,
The Ohio Poetry Association (OPA), in conjunction with the Cincinnati’s Pendleton Art Center’s Art in Action program, is presenting a FREE writing workshop.
10:30 AM - 3:00 PM
1310 Pendleton Street (just north of Hollywood Casino downtown)
Cincinnati, Ohio 45202
This FREE event is part of the Ohio Poetry Association’s Ekphrasis 3-C Series, with two other events in Cleveland and Columbus.
EKPHRASIS, in poetry, is the representation (literally a re-presentation) of a work of visual art in the medium of poetry. This event, rather than taking place in a museum, will be held in a century-old factory building which has been converted into working art studios, and currently houses over 100 studios used by more than 150 working artists.
The workshop will start with a short program and introduction to the PAC after which poets will be free to roam the building seeking inspiration from art that is on display throughout the building, and to visit many working studios to meet artists where they work. There will be at least 30 participating artists welcoming poets to see the process in action, and to absorb some of the amazing vitality and creativity that permeates the PAC. At 2:00 PM, poets will reconvene to share observations and work from their experience.
Ekphrasis 3-C: Cincinnati will be conducted by Bucky IgnatiusPresident of the Greater Cincinnati Writers League who also works as building manager of the PAC. Registration is recommended but not required. You can register by email to bucky.ignatius@gmail.com or by phone, 9AM to 1 PM Monday through Friday, 513-421-3339. 


Monday, March 09, 2015

Baby Doll

“Hello, baby,” Mom said, with a broad smile and wide eyes that had surprisingly become part of her character as of late.

The words, the phrasing, the inflection all reminded me of Mom’s sweet tone she used while cooing to the grandchildren when they were little.  How she would scoop them up into her arms, toned from years of ravioli rolling, and nestle them into the crook between her collarbone and cheek.

When our son Davis was born, Mom, or "Nanna," rocked him to sleep many afternoons, as he was somewhat of a fussy baby.  He eventually grew to sleep even in cars, when not behind the wheel. Observing Mom as I entered into her living space, I recalled how she used to call Davis, her little snuggler (Sorry, Davis).

Standing over her now, I realized, she wasn’t talking to me. She was speaking to the baby doll resting in her arms. A plastic baby doll. No, her behavior was not bizarre. In fact, it was quite normal.

“Put something meaningful in the person’s hands,” wrote the authors of You Say Goodbye, We Say Hello. TheMontesorri Method for Positive Dementia Care, Tom and Karen Brenner.

About a year ago, a companion caregiver who visited Mom regularly, and treated Mom like her own, hit upon the idea to gift Mom the doll.  The doll was wearing more clothes then than she had on now. But the doll’s frilly pink dress and blue eyes enticed Mom, who, every once in while even slept with the doll.

Occasionally, I brought in People magazines for us to read, because of their large print. But also, the cover sometimes featured a celebrity who had given birth, along with the new baby. “Oh, there, that one. Isn’t he something,” Mom said about Prince George.  

Recently, there had been a cover picturing Christine Aguilera, with her daughter Summer Rain. While Mom was not pleased with the name, she adored the baby wearing a tight pink hat and sporting startling blue eyes.

Sometimes, with my iPad and Mom seated at my side, I search Google Images, using the term baby. Mom is so taken by the plethora of images, she is overwhelmed and speechless.  She giggles and can’t seem to settle on which one was her favorite.

But, when I heard Mom say, “Hello, baby,” for a split second, I thought she was directing her hello at me.  Instead, she was swinging the baby doll back and forth, as she rocked in the “maternity rocker,” and peering into the doll’s eyes, saying, “Hello, baby.”

Often, when the baby doll is in her arms, other residents stop and ask, “Boy or girl?”  “Can I hold her?”  “What’s his or her name?”  They tower over Mom with jealousy and wistfulness.

Mom doesn’t typically respond, but I do. “It’s a girl.”  Or, “About three months.” Or "Would you like to hold her?"

“How lucky,” Mary Lou responds.  “Isn’t that something,” Big Jim says.

The doll didn’t come with tag stating her name. I’m not certain a name would have stuck. Her name is Baby Doll, and that works for Mom. Occasionally, Baby Doll has gone missing.  Meaning, one of the other residents has taken off with the doll.  Sometimes, the staff has to put out an APB for Mom’s doll.

Put something meaningful in a person’s hands, I harken back to. Sometimes its coffee, or a snack, which is how I learned to not complain about Mom’s eating, unless it’s the whole hunk of brie she once tried to consume at Christmas. Eating is a meaningful act.

In their stories, the authors included other meaningful items, such as baseballs, violins, trains, pipes and wrenches (for a former plumber). When Mom visits my house, I put a wooden spoon in her hand. She still loves to stir a good pot of sauce. And despite the lack of babies in our family (no rush, kids), she still loves good hugs. If no one else is around, the baby doll is a fair substitute as her little snuggler.

A mother never forgets how to love. And she never forgets how to love a baby, even when the baby is a forty-nine year old daughter resting on her shoulder, asking the big questions about life.

She will wrap her free hand around my cheek. “Well, there. Its there,” she'll respond, and hold up her baby doll.

You Say Goodbye, We Say Hello. The Montesorri Method for Positive Dementia Care, Tom and Karen Brenner.  Read more here….