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Have you been following "These Writing Shoes" for stories and information on the author's journey with her mother through dementia?

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Annette J. Wick
(and Mom)

The Measure of a Mother's Time

The Measure of a Mother’s Time

I pause outside of "Ruth's" door. The sun is cutting through her window shades, engraving lines of lights across her already stern face.

"Ruth" sits in a wheelchair now. When I first met "Ruth" she had been walking, though with a wobble.  Then, she transitioned to a walker. And now, a wheelchair, and not the comfortable kind.

The condition of the residents here is how I measure my mother’s time.

The ones that have left. Rosemary, who passed way. Peyton with her dog, whose family transitioned her elsewhere.

Those still here whom I wish the universe would offer a little more grace and take swiftly.

Families that come and go. The families that never come at all. The loved ones that hardly ever leave.

This is how I count days with my mother at her care come, over these past three years.

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

I grasp at her hands and note her slender her fingers, long nails she used to shape and polish before her night out on Saturdays with my father. Her extremities are unlike mine. I add up the ways in which we differ, and there were so many I used to bragged about in our past.

There have been days of endless wondering about my mother’s condition and countless taunts from her about my hair or shoes. There have been multitudes of moments we celebrated (fresh peace juice dripping down her chin). There have been a sequence of small stuff that I sweated, waiting, for her, or me, to change.

I have whispered incalculable confessions: Mom, you were right. Wearing a V-neck shirt makes you appear thinner and taller.  Still water runs deep.  The best way to pick a husband is to watch how he treats his mother. And battled with her on a few other fronts. Mom, spit that out, its chicken grease.Mom, running track was not going to make my thighs thicker, they were going to be thicker anyhow.  See photos of your own mother for proof.  

I have heard my mother tell another resident, who had been cursed with an endless blank stare, “Now don't you start that with me,” and have had to scurry Mom away in a another direction before the woman could pull at Mom’s finger. I have smiled at Mom’s simple acts of beauty, as she caresses the face of another resident with gray, tired eyes.

I have survived tornado and fire drills amidst 12 women plus caregivers, with obstacles such as wheelchairs and walkers squeezed in the laundry or shower rooms, explaining over and again why so many of us were crammed into a tiny space. “When you were younger in school, your school always had fire drills. This is like that.”  “Oh,” they sigh, with slight reminiscence. Then they ask, “why are we here,” once more.

I count the caregivers that have come and stayed. They have been the dedicated majority.  Each one adores Mom's smile. She will casually smooth her hand across their brown or tanned arms and repeat back whatever phrase they have uttered to her.  “Jean, the Bean,” they say.  “Jean, the Bean,” she says back. It’s a melodic call and response.

I tally up how babies can make her day, either prodigy of visitors or residents, but especially Prince George and Princess Charlotte, who grace the cover of every other People magazine I carry in for Mom to read.  I tally up too, the other People magazine covers, as a way to measure time, Pope Francis, Leslie Gore, B.B. King, Omar Sharif.

I rely on the fact Mom still mentions the silver vent hood atop the roof, and stops to admire the pink and green beech tree.  She is want to point out each garden stone with pebbled glass missing, assigning the stone a number, then counts ones that are not present.

We have moved on from listening to strictly Sinatra. With so many music apps on my iPhone, I can mix up the playlist to include Nina Simone or Dean Martin, Bette littler or Louie Prima, and keep track of the names that cause her to respond.

Mom wants to be held more. She grabs on to me longer when we hug. I count her hugs, and the number of seconds in which they last – all day if I let them. She nestles her face into the crook of my neck, appreciating the sense of closeness. A feeling that is three years gone for her.  Sometimes, she still pats me on the back or backside, like she did when I was five.   

Recently, the nurse noted Mom needed an annual check-up with a doctor.  I decided to switch to the in-house doctor at that point, to reduce the challenge of moving Mom from point A to point B when seeing her original doctor, Dr. Graff.

The in-house doctor phoned one day to jot down Mom’s medical history.  “About how long ago did she develop dementia,” he inquired.

Her timeline eludes me. I used to recite actual dates and times for when I noticed the occurrences. When did I know? When she balked at changing clothes, taking a bath or listening.

I gave him a generic answer. “About five years ago.”

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

I have spent more time with her these past three years, than in some entire decades of my younger years. And yet, it’s hard to imagine, I still have days where I depart from Mom’s care home in tears, usually because our day together was near-magical, or that she wanted to hold tight and not let go.  She has been a near-perfect muse, and I have only gratitude for the immeasurable amount of words it has taken to capture her essence.

A week ago, I received a call from Mom’s care home. “Your mom had another seizure.”

“I’ll be right in.”

So, throughout the week, along with nurses and staff, I waited and counted and forced her to drink water or Gatorade or anything. She was also diagnosed with a UTI, and in the midst of X-rays due to complaints about her back, the radiologist discovered some arthritis in her back.

We managed to keep her out of the hospital, and she responded slowly, her gait unsteadied and present mind still obscured.

But her recent situation challenged me back into the space of unknowing. If death had slipped from the subtle grasp of life Mom held on to, I would have sent her off with my blessing. She was already filled with peace, nothing left to add.

Until today, when an arrow traveled through my heart as she pushed a strand of hair behind my ear while I hugged her.  Count one more day I wanted her back.

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

Transitioning Loved Ones Experiencing Dementia

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

No, they didn’t.

“Who is they?”

“The doctors and social worker.”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

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.