Three Questions and a Fourth (in Oregon)

“Where will your baby play?” Mom asked me.

Standing side by side, we faced wave after wave of oncoming ocean. Sand washed up over our bare feet immersed in the frigid waters of the Pacific.

It was summer in Oregon. 1996.

I was pregnant. Five months in the belly, four to go. Or so I thought.

My mother was visiting.

Mom on beach in OsideThe Pacific was not new to her, after trips to California, Hawaii and several now to Oregon. It was only new to our relationship. She grappled with my move from Ohio to Oregon, four months after the moving van closed the door on my twenties.

I rubbed my belly, protruding but noticeable only to Mom and me, and took in the salty air, peppered by smoke from last night’s fire. It was a smell I would carry with me forever. The baby would too.

“What do you mean, Mom?” I stared down the tide with hands on my back to hold up whatever life force was in me.

Annette - Oside - 97

Disclaimer: This photo was taken the following year.

“He or she will have the entire Oregon Coast as playground.” I swept my arms up and down the coastline. There would be no need for slides or swings when tide pools and sea stars tickled the baby’s toes.

I tossed off the question and brushed sand off my feet.

But a few specks of my mother’s intrigue followed me home, lodged themselves deep into my subconscious.

A baby boy was born, four weeks early. I had cheated Mother Nature on the last month. So did he. We named the boy, Davis.

Twenty-two years later, that baby, Davis, returned to Oregon.

He not only found a playground, but he made it home.

*

“Where will Devin be buried?” my mother asked.

It was the year 2000. My first husband, Devin, had died of leukemia. On the phone to my mother, I dared reveal his wishes to her. “He wanted his ashes scattered along the Oregon Coast.”

“But where you go, to visit him. Where will his grave be? How will you honor him?”

My mother was a devout Catholic, unaccustomed to new customs, ones that didn’t involve cemeteries.

After all, her Sundays, our Sundays as children, were built around church activities and visiting cemeteries. It had always been that way for her. Graveyards were just an extension of the family home. In her generation, her faith stipulated a body should be buried – most likely to appease the coffers and not the spirits.

The question had been asked after our move, after Devin’s diagnosis, after our move to treat his diagnosis, after Devin’s death.

I huffed. I always had an answer for her, she’d say, to dismiss my responses. She would do the same thing now I was sure. But I answered anyway.

“Mom, I’ll get on a plane and head to Oregon. Like I did before our move, like I’ve done since.”

“It’s not about what you or I want.” No one had to ask, what would Devin think? It was what he wanted.

*

“Oregon, who is in Oregon?” Mom asked.

It was 2015. My eighty-seven-year-old mother now experienced significant cognitive decline. We sat peering out the windows at a large pin oak with fluttering leaves hanging on through winter. I scrolled through photos on my iPhone, showing her pictures of her grandson, Davis, whom Mom saw frequently, but not since he left for school in Oregon.

It was Christmastime. Davis’ flight was set to arrive amidst sleet and snow that evening. I was anxious to see him.

“I’m sure he will come visit you.” I patted her on the knee.

My mother beamed.

The two of them had always been close. She took hold of my phone and stared long at the grandson who possessed the dark hair of my father, the deep eyes of the Italians and the smile of Devin’s, whom my mother loved like a son. A grandson she knew to love, even if she didn’t “know” his name.

“But what is Oregon?” quizzed my mother. She was the same woman who once chastised me for wanting more in my twenties, for moving to Oregon when I was pregnant, for wanting everything Oregon in the way she desired everything Italian.

“It’s a state, Mom.”

A state of mind, a state of restfulness, healing and peace. It’s a place I go when life falls apart. It’s a place where I let my thoughts rumble and tumble in the arctic waters. Like agates smoothed over. A place where I offer them to the sea stacks and set them on the altar of the Fates.

*

It’s 2018. What is Oregon? A place I’ll go after you die, Mom. Its a place of remembering for me. I’ll remember your first three questions: Where will your baby play? How will you honor Devin? Who is in Oregon?

The corners of my mouth will turn up and I’ll open my lips to catch the sea mist or the rain.

In those drops of purity, I’ll remember Davis’ birth, Devin’s rebirth and yours. And I will have all the answers you and I both need.

 

 

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What I Wore When Mom Died – Part I

I didn’t know what to wear the day I thought Mom would die.

Summer had kicked in, but the rains had popped in and out over the past two days. I first slipped into a flimsy Target skirt made from t-shirt material that you roll up and toss in a suitcase and somehow unrolls wrinkle-free on the other side of the TSA line.

If Mom was dying, I should wear a skirt. Propriety, at least the appearance of it, had been important to her, to anyone her age.

The day prior, I had parked for hours at Mom’s bedside after noting her disposition had changed considerably. Mom tugged at her ears in a weird Carol Burnett sort of way. She pushed out any food I tried to offer her. No to pudding? No to cookies? That was a drastic change. Swallowing became a chore for which she wasn’t getting paid. Her agitation, with eyes mostly closed, had moved to a new level, to rival her aggravation of raising five kids in the home.

And when I left for an appointment with my hairstylist – Mom would have approved – and returned, my mother’s agitation had reached new heights. We had been managing the pain from her fractured hip, but perhaps not.

Her caregiver, Janice, transferred Mom from wheelchair to bed after lunch to see if the change might offer her relief. After several more hours and a few consultations with me, the caregivers called the hospice nurse instead.

As Mom squirmed around in bed, something else was happening. There was a process that occurred when the heart no longer pumped blood effectively to the extremities, in particular the feet and hands, and the skin became discolored. It was called by another name, but I called it dappling. Dappling sounded more creative, heavenly, less medical and cold.

The nurse suggested I call the family—it was finally time.

But was it?

The next day was the skirt day. Fully-dressed, my skirt flew up as I shuttled between downstairs and forgetting to water the flowers, to my office and bedroom, which were both on the second floor of our Italianate-style town home, dashing off emails and writing notes in between blow-drying my hair. Like any human, I feared letting go of my other life acknowledging that soon I would have to let go of Mom’s.

Then, a shot of rain came down, just enough to water the petunias and coleus and other miscellaneous flora barely surviving my inattention. It was God’s, or Dad’s, the gardener, way of saying, “Be with Mom. I’ll take care of the plants.”

I scrambled back and forth in the hallways to locate chargers and plugs for all my electronic devices. Cords dangled from my arms like an octopus. What was I thinking? Of course, I would write through my mom’s passing.

Of course, I wouldn’t.

Annette SkirtTraipsing back through my dressing room, I spotted up a pair of folded jeans atop the laundry basket. When had I even done laundry? Or had Mark? To save myself the task of hanging them, I snatched them up. I yanked off my skirt and wriggled my way into comfort. I needed a new approach. If Mom was dying, I needed my work jeans, my writing jeans. The skirt lay crumbled on the ground, as if marking the outline of someone no longer there.

In Mom’s room, I sat for another round of twelve or fourteen hours. I’m not certain how I had the patience or tenacity to stay for so long in a room where Mom’s life had been downsized, one containing all the belongings she needed or required within a claustrophobic space of 12’ x 12’, with a half bath to boot. She had traveled a long way from Lincoln Street and the soaring home she was once kept pristine.

For a while, a rosey blush covered Mom’s face, though she was no longer eating or drinking. Lakeisha, her hospice nurse, gave Mom a sponge bath, rubbed a lavender-scented lotion into her skin, and, after we had searched high and low for Mom’s favorite salmon-colored, flowered, sequined top, dressed her in a bright pink shirt.

One shirt. That missing shirt had represented everything about Mom, yet we couldn’t find it anywhere. Pink would have to do. Plus the latest selection was adorned with a sheath of lace that resembled Italian tatting and I found it humorous if not synchronistic. It would be a perfect shirt to die in, if it were to be that day.

At the end of the evening, after the dinner hour, Mom’s agitation increased. Her breathing became labored. It too had a name. Cheyne-Stokes breathing. Everything about dying now had a name.

Was this it? Should I call Beth? Where was she? What time did she say she was coming back?

Counting, I kept track of Mom’s breathing and her last medicine administration. Mom needed more, more of something. Stephanie agreed. She tracked down the nurse supervisor who called the doctor for a new set of orders. An hour later, after Mom was repositioned, she rested, surrounded by pillows, on top of a marshmallow bed.

Now present for the hour, Beth hesitated to leave. I did too, until Stephanie finally declared, “If you’re meant to be here, when your mother dies, then you’ll be here. If you’re not, its not meant to be.”

No one had ever counseled me on “how to leave” before. But it was true. If Mom needed permission from the living to leave, so too did the living need to permission to depart.

It came my turn to say goodnight.

The problem was, I had already professed what needed to be said the night before. I spoke to Mom about her baby son, the one she only held for two days, her birth father, Devin, Dad, and everyone whose life had meaning to her but had died. I’m not sure if that comforted Mom or not, but she was the one who toted us to the cemetery every Sunday, so I had that evidence as backup.

That night, I altered my goodbye theme from death to life, from the others to Mom and me.

In my mother’s more cognitive state, she occasionally uttered phrases like, “Hey, I like you.” “Hey, that’s funny.” Or, “I don’t like you.” But my favorite, the one that played in my ear, was “Hey, we’re pretty good team.” In Mom’s voice, she would hit a pitch only described as angelic and laugh at her perceived joke.

I was seated on Mom’s right side in her rocker, which had been wedged between bed and wall. Sinatra hadn’t sung all day, a welcome relief. Instead, I had played Women In Jazz, the Inkspots, Ella, and some old Nancy Wilson. But I queued Frankie up once more.

Then, I whimpered through tears. “Mom, we’ve made a good team. Of course, nothing like you and Dad, but still, we did all right.” I rubbed her now bony hands and placed her one mottled hand over my tanned one, waiting earnestly for her death grip where she might crush my fingers between hers and my wedding band. Her hand remained motionless.

“Mom, if you’re really listening, and I believe you really are, because I’m speaking into your good ear, then know this.

“We’ve been on this path for a long time, and its been filled with so many joyful moments and amazing views. We’ve walked the Oregon Coast together, we’ve walked Italy, Seattle, vineyards, Cincinnati, and Amherst.” The list was endless. “And of course, here. All the miles we’ve walked.” And I imagined we had covered many on those 2.5 acres of quiet set back from a bustling Galbraith Road.

Mom sipped in several breaths, and held another few. The blanket rippled as she breathed.

“This path separates. You can see it up ahead. We have to separate.”

“Nothing, nothing will be more perfect than where you will be walking.”

I was departing in two days for my son’s college graduation and the Oregon Coast. I had joked all week, if my mother died while I was gone, I would kill her. I never said that aloud. But we had journeyed to that far edge together and I wanted to be with her ’til the end.

“And my path? I’m going to Oregon. Again. You know, I was always leaving you for Oregon, even if in my mind.

I lay my head next to Mom’s in some twisted yoga pose. A scent of lavender emanating from her neck tickled my nose. I gazed up at the ceiling. “But on your path, Mom, I see the rays cutting through the trees. It’s your sunshine. And you can go, Mom. Go find the sun.”

I parted from Mom that night with a lightness in my heart, convinced I had offered a way forward for both of us, a key to unlock the gates of whatever coveted land lay ahead.

At home, I dropped my jeans on the floor next to the skirt. I was too tired to pick up anything but my feet and hoist them into bed. I lay awake for a long time, watching the streetlights flicker, listening to the city buses whoosh by, waiting for the proverbial 4 a.m. wakeup call that never came.

 

To be continued.

 

What is the Definition of “Meaning”?

This is the second in a three-part series after Mom’s fall.

Mom Headphones Outside“You gotta have heart to do this job,” Sieta said, while I spooned oatmeal through Mom’s pursed lips. Sieta was one of Mom’s caregivers and her long braids, like those of an African queen and topped off by a bun at the crown, swung in the air as she turned away to pour Mom a glass of juice.

On a low dose of pain medication, Mom chewed and swallowed through a bit of a fog. At the intersection of pain medication for comfort after a hip fracture versus a state of constant wakefulness and distress for my mother, I had turned to the drugs.

And now I wondered about the meaning of Mom’s life. How would I define of meaning? How would Mom? And how would the assembly of caregivers who surround Mom and fuss over her every need?

After Mom ate breakfast with syrup on everything, I wheeled her into the courtyard. The day was warm with rain just spittin’. In her other state, my mother would have been yelling at me. But now, Mom didn’t. I giggled a bit. I was getting away with something.

Having obtained my driver’s permit for her unwieldy wheelchair, I now steered Mom outside at all hours. I fed her breakfast in the dampness of morning. And lunched with nippy ants crawling over our arms and legs. Wherever Mom was, wherever she was going, I wanted her to have sunshine and fresh air for the journey.

Did that give meaning to Mom?

I returned to the quandary, the theories my husband and I had been batting about all week. Was Mom leading a meaningful life?

Would the honest answer be, “No. No, Mom was not?” But that didn’t mean Mom’s life wasn’t meaningful, I reasoned, as Sieta’s words about her heart floated back into my head.

In the days after Mom’s accident and subsequent confinement to a two-wheeler, I cried and hugged the caregivers every time I scurried in and out of Mom’s room, the kitchen, and the outdoors. I thanked each woman—and they were all women—for whatever they had done, for whatever they were about to do, especially as it related to Mom’s bathing and cleansing, self-care had been utmost to my mother.

I had always shied away from writing about Mom’s incontinence—out of respect for her. Over the years, Mom underwent several surgeries and owned a digestive tract that never cooperated with what she wanted to eat. And she always wanted to eat, except those days of the grapefruit diet.

But many of her early years with dementia were spent in shame after soiling her clothing. Her condition was the cause of much hardship for my father and sister, Jeanne, for Mom, and anyone else who cared for her. Mom and I often found ourselves twisted and tangled in a cramped bathroom stall of a Bob Evans or McDonald’s or even in my own home, trying to change her pants or socks or shoes, eventually transitioning to disposables when Mom no longer understood the changeover.

As Mom’s dementia worsened, so too her brain lost control of her digestive organs. If I could have taken one thing away from her in all this, it would have been that embarrassment. I would have chosen for Mom to keep her dignity. In the end, the dementia did offer that.

Yet, never once had any caregiver of Mom’s complained. They jumped or rushed to change her clothes to keep her comfortable. Not doing so would lead to UTI’s that led to seizures that led to…that led to…

Back in bed, Mom lay with legs curled, unwilling to extend them for fear of hip pain. I observed Janice and Angel as they bathed Mom’s ninety-year-old body. Her shower would come tomorrow with hospice help. For now, warm, worn washcloths tickled mom’s tummy and her short arms and the legs she kept pulled in to her core. It was most sacred what I was watching, as Janice ran the cloth along Mom’s legs, under her arms, beneath her single breast, and Mom opened herself up to this practice. Inside myself, I melted. To witness Mom be so vulnerable, surely these women of Arden Courts were angels.

A former boss of mine once said, “Never ask anyone to do a job you wouldn’t do yourself.” And that had been my mantra for Mom’s care. Yet there were legions of those who had performed the job nobody else would do.

Mom and Janice

Janice. With Mom as she ate Italian Love Cake for her 90th birthday party.

Like Janice, her face showing worry, who tells me to text her while she’s on vacation if anything changes with Mom.

Or Kre, who grins, her white teeth gleaming, and leans into Mom’s face. “Hello Mamma,” she says and Mom beams back.

Or Lakeisha, who was once a caregiver at Arden and now visits Mom as her hospice person. Mom lights up in Lakeisha’s presence and her sassy attitude.

And when Jayna and I last spoke, she was upset at not being able to change her charges quickly, yet there are those who lay about all day, soiled, in other care home settings.

My mother was best at mothering and the women here—Jayna, Kre, Lakeisha, Janice, Becky, Cleo, Valerie, Suzy, Sieta, Angel, Tiffany, Bobbi, (and so many other givers of care in charge of one woman’s body and mind) —had been like daughters to her. I so desperately wanted them to know another Mom – a different one – yet they had been content to love and care for the one in front of them. While we as family or loved ones might have felt as if Mom’s humanness had been diminished, her caregivers still saw her growing as a human being.

Janice plated the meal for lunch, ladled gravy over the potatoes, knew who wanted cereal for lunch instead of chicken, who needed ketchup or Diet Coke, who still required sleep and who just needed to see her serene face.

“Here you are my friend,” Janice said with somewhat of a southern accent on friend. She set the plate on the table. Mom gazed up at her with the adoration of a second-grader taking communion. Mom used to echo, “friend,” back. She will again.

Janice was truly a beautiful person and the first word that came to mind was duty, but her actions more described devotion. And while I bragged Mom was one of her favorites, Janice lavished on the residents the same love and attention anyone would wish for when turning 84, 92 or 103.

And there was one other dutiful one.

On Mother’s Day, I woke to a touching email from Becky, the activities director at Arden Courts. She was one of Mom’s many. Over our chats, Becky and I had determined that she arrived to work at Arden two months after Mom. She had also witnessed my struggle to cope with Mom’s recent captivity.

Happy Mother’s Day. I am thinking of you today and standing with you in spirit. I read the blog today. I don’t know what your particular spiritual beliefs are, but my experience as a witness to many last years of living is that, far beyond the time people are able to communicate, they are able to love and accept love. Your mother has been absolutely blessed by the fierce, unwavering, unconditional love you have given her in the time I have known you both. Please know you are not alone. Lean on those people you trust. Take care of yourself. I’ll be there- Janice will be there- for your mom through the end. 

The email was proof of the commitment of the women at Arden. Proof that we were all capable of loving from a place with no genetic strings attached.

So what was the definition of meaning? Something intangible that knew no bounds?

Mom clamped her lips tight. Lunch was over. I handed in Mom’s plate like a kid in a junior high cafeteria and reported on her consumption.

Was Mom leading a life with meaning?

In 2004, when Mom underwent hip replacement surgery, she cooked her meals and froze them before surgery. Now, in her weakened state, she required more care than ever before.

If this end is not what I wanted for Mom, then the best I could hope for was Mom had been welcomed, raised, and loved by the women (and occasional men) of Arden. Her life had given others work filled with meaning, and a heart filled with love.

 

Rocking Chair Reflection

* This is the first in a three-part series.

I sit in the oak rocker, a green, crocheted afghan cushioning my back. It’s too hot now, this time of year, for the afghan to provide warmth. The warmth Mom needs is outside, only we, she is not outside.

As a matter of fact, it was Mom’s travel outside of her care home into the tranquil courtyard that was her undoing. The years I worked to train Mom’s muscle memory or retrain it when necessary, to remember she is free to wander outside. The many Springs whenever the temperature rose above 68 I coaxed her outside. To remind her of that first kiss of summer yet to come. The times I overworked her in PT to get her walking again, so she could easily stroll outside with no hall monitor again, once her taut little legs could handle the weight of her belly and the direction of her mind. The times she cussed me out.

And finally, it was Mom, free, outside, toddling along the sidewalk, possibly another resident in her path or possibly they were walking hand in hand or arm in arm without the other one aware, and one pull or push in the wrong direction.

Both fell. One landed in the mulch. Mom landed on the rocks. On her hip.

The hip fractured.

Then, a flurry of calls from the care home, and my pleas for the ER doctor to wait to prod Mom until I arrived so I could discharge her from hospital duty. “She is DNR/CC,” I say over and over. “DNR/CC,” I say again as I pass through hospital corridors on a Friday night, with plenty of other patients who should be the same.

Finally, transport arrives so we can leave again. So I can take Mom home. To her home, a place that’s been her home with people who love her in ways I can’t possibly comprehend.

In Mom’s room, her rocker is my stead, my captain’s perch, widow’s walk, the place where I wait and rock and imagine my mother rocking me in this chair, though I don’t know for certain how old the chair is. Perhaps it came along when my younger sisters were born. I sold off my baby rocking chair after I moved back from Oregon. Sadly, I wasn’t planning for more children. Had the rocker been a sleek model such as this, with curves in the right places, but not extra butt room, I might have kept mine.

And now, I rock and wait. Will Mom cry out when she twists her body? Will she wake up and smile and make my day? I collapse into the curve of this chair, as if absorbing and resting from the many miles Mom and I have traveled together while she has lived here. I tell Mark, “I don’t want to remember Mom like this.” Curled up, possibly in a pain that she cannot articulate. But honestly, the hours she and I have spent together have erased the hours in my younger years when my memory might recall a different Mom. Our time together in the past six years has been compressed into moments, the good ones, the hard ones, everything in between. If I string together all those moments, I might have a grand day, at least.

Mom and Annette - CheeringThe nurse was just in. She’s new. She mentioned the pictures of Mom and I hanging Arden, taken during a Cheering for Charity event. Mom was joyful that day and thus I was too. The photographer captured that joy. Of course, I recall how Mom loved my husbands, my little boy, the girls now mine, our trip to Italy. Those moments were important. But these times are different. These moments are extraordinary because they are simple, fleeting.

As I sit and feed Mom, I imagine what I looked like, sick in bed, home from school on days when she stirred up my favorite “get better” concoction – an egg, beaten, with sugar and vanilla. It was an old Italian thing, she told me, and, a long while back, I found a book with a similar description. Some days, I still mix up the concoction for myself, for the memory, not for the ailment or relief.

I rock and rock and rock. Its only 11 a.m. How will I fill my next hours, when they were once filled with our strolls outside? Mom looks like Dr. Dre wearing Beats headphones, listening to Sinatra off my iPhone because I can’t stand the voice anymore off her CD player and I know his voice keeps her calm.

I made the decision today to move forward with hospice for Mom – for comfort care – instead of surgery for a fractured hip. It’s not end of life care, I repeat to siblings and friends. There is a difference. Will my mother’s life be shortened now that she fell? Perhaps not anymore than if she hadn’t. Will she be comfortable in the Cadillac of wheelchairs and hospital beds? Probably so. She was already napping plenty. Still, it’s hard to say no. No, to more surgery or medical intervention.

Her body is worn down from being worn down.

Mom is snoring now, like a jackhammer during the construction going on near my home. I am glad I am not at home today, because the sunny weather would have brought all sorts of construction trucks to the street and driven me insane.

Mom’s room is near the TV room. I hear Dorothy’s voice in the Wizard Oz. It’s the scene where Dorothy first encounters the wicked witch. I used to crouch behind the couch whenever I sat to watch the show as a youngster. Or wrap my arms around my mother – and shut my eyes.

And here she lies before me, sometimes snoring, sometimes wide-eyed. Mom’s not said much but offered a few smiles and stroked my hair. I know she knows I’m here.

“I’m here,” I remind her out loud. “We’ll get through this together.”

“We’re off the see the wizard,” the troupe’s tune drifts in from the other room. Someone just turned up the volume or fixed the TV to raise the volume higher.

We’ve always been on a yellow brick road to see the wizard, Mom and I. At times we have been each other’s Dorothy, or the good witches and bad. We’ve been the lion filled with fear, the scattered-brain scarecrow, and the tin man looking for love. Yes, even the lollipop kids.

And now we have arrived at a point in our journey when Toto tugs back the green curtain.

But Mom never needed the Wizard to pull the levers nor Glinda, the Good Witch, to magically transfer the slippers to her. She knows the way. I just have to listen to her, for once in my life, and let Mom make her way home.

I’ll be in the rocker, Mom, waiting.

 

* This is the first in a three-part series.

 

I Want the Frim Fram Sauce: Carrying Mom’s Music

Standing in the bathroom, notes of classical music grating on my nerves, I brushed my teeth after a visit with my mother, swaying and humming to a different tune.

“I want the frim fram sauce with the Ausen fay /With chafafa on the side” 

My niece emulated Pink. My son obsessed over the Chainsmokers and my daughter, Cheryl, stalked The Mountain Goats. Friends Nic and Em insisted on queuing up Neutral Milk Hotel. Even my husband had his favorites, the latest a pianist from the CSO, Jeffrey Kahane, and he cranked the classical music loud as ever while I took a shower, immersed in the sounds of an Olympic skating competition.

IMG-6294For me, I chose the Classics. The music of my mother.

But my route to the standards wasn’t straight. It was more like learning the steps to the chromatic scales.

I belonged the generation whose fingers were forced to march through the rigors of Bach, Beethoven, and Brahms at the mercy of piano teachers who rapped knuckles with wooden rulers or lived alone in homes where broccoli burned on the stove.

And I did so at the beck and call of John W. Schaum piano books, beginning with the Pre-A Green Book.

Then, if luck or practice, or Mrs. Scutt or Mrs. Bacon had their way, I was invited to master the piano utilizing the lessons presented in the A – Red book.

images-1I was a quick learner, mostly because I wanted to advance fast enough to be through with old John and my lessons. I tickled my way through the beginner books and soon was assigned the red book. And each week, I might receive a check or check-plus on my level of skill in mastering the masters and move on to the C – Purple Book or D – Orange.

I also bored easily.

One day, I discovered my older sister, Laura, had acquired a new piano book from the Driscoll Music Store down on Broadway in Lorain. The book was a combination of Broadway and jazz favorites from the 1950s and 60s. I seethed. Laura had been assigned more contemporary songs to conquer. Laura was a lefty and I would not deny she had been gifted with a bit more artistically than I had. Still, what my older sister possessed, I wanted for myself.

I picked up the book, As Time Goes By, with a rose centered on its cover, flipped it open, and plunked out the melodies to A Time for Us, The Impossible Dream, Moon River, Autumn Leaves, Jean, Jean. Parsley, Sage, Rosemary and Thyme, and Misty. I memorized the words that accompanied the melodies. Because the lyrices were there to learn.

When my mother heard me play, she tossed her dust rag on the floor, joined me on the piano bench, and sang along. She would pop out a few notes, or the whole song if I let her. Nervous around Mom or anyone else, I fumbled over notes or apologized, saying, “Sorry, Mom. Let’s start over.” It was a maxim we shared, one that captured our relationship succinctly then, and now.

Mom rearranged the furniture often in our home on Lincoln Street. Over time, she had the piano wheeled from the sea-foam green, sunlit living room to the high-traffic family room. She assumed one of her children would play the piano more frequently.

I played less. I relished the feel of the vacant, sea-foam green living room, alone, with an audience only I could identify. And, I didn’t want my mother’s singing to remind me of my own mismatched voice and how I couldn’t reach the nuance of the lyrics she crooned.

I had grown up and moved on to other pursuits. After junior high, I allowed my skills to lapse.

The book lay crushed beneath the Schwaum collections, and flute and trumpet sheet music, in the bottom of the piano bench, untouched for years.

During my first marriage, I acquired a piano of my own from Aunt Lynne. I asked Mom’s permission to keep the piano book of standards. My fingers soon danced again over A Time for Us.

The piano was forced into storage when I moved to Oregon. I broke the piano out of storage when I moved back to Loveland and installed it, of all places, in the living room, where the bright sunlight of the early morning streamed into another green room, this one a warm khaki, and enticed me to play from that same classic book, rediscovered beneath other musical failings.

IMG-6292Twenty years later, I found myself at my mother’s dementia care home where extracurricular activities (everything is extracurricular after age 90) centered on popular music, movies, and books from my mother’s era.

Recently, I read a social media post predicting what genre of music will be playing, when baby boomers, or post-boomers, like myself, lived in community with others once more.

One commenter predicted Dylan. And I had to break the sad news. Dylan was already on the playlists. Not because of the onslaught of boomers, but because of a few early-age Alzheimer’s residents who deserved to hear their music.

During the most recent music event at Arden Courts, a group called Wild Honey was contracted to play. Several times, I noticed the base player watching me sing along while he plucked away at his strings. I retreated into myself, embarrassed. He probably wondered what kind of 50-year-old knew the lyrics to those songs, Our Love is Here to Stay, April in Paris, by heart and whispered them into her mother’s good ear? What kind of music life did she have?

I wanted to answer Kesha. Or some EDM superstar like Odesza. Or The National. They’re from Cincinnati. Yes, even Neutral Milk Hotel.

But the answer was, I had none. Other than that acoustic space inhabited by memories of my mother’s music.

My children know to fire up The Boss when my time comes. For now, I work my way through lengthy Ella Fitzgerald or Frank Sinatra discographies and sing a few Nina Simone songs with Helen, another resident.

I departed Arden Courts with a little earworm or two wiggling around in my head throughout the rest of the day.

Like a spy, my mother and her first loves somehow planted those notes.

They are the seeds of Mom’s life that I carry now, along with the frim fram sauce with the Ausen fay with chafafa on the side.

I don’t want fish cakes and rye bread
You heard what I said
Waiter, please serve mine fried
I want the frim fram sauce with the Ausen fay
With chafafa on the side

Now if you don’t have it just bring me a cheque for the water.

– Visit the Nat King Cole video.

 

 

In Her (Virtual) Shoes

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

I wrote down shoes.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

That process tied into The Wayback. And to Mom.

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

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

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

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

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

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

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

Say that you were stranded on a desert island…

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

 

Cheering on Lives

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Peggy beamed. “Everyone says that.”

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

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

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

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

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

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

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

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

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

AJW, 10/3/17

The Sacrament of Cookies

Cookies for Arden flashed on my calendar that Friday. It was time again for the weekly rite.

IMG-3186Arden is my mother’s home. Her care home. Mom has lived there for five years, just the past week. She lives amongst sixty-some residents who experience some form of dementia or memory altering condition. Mom has outlasted at least a third of the residents who succumbed to death, departed through lack of funds and or the need for a environment more suited to a particular condition. However, it is unlikely Mom will beat out Miss M., currently careening into her hundreds.

Five years was an eternity to evaluate the relationship I had to my mother’s disease. But the span offered me the gift of not only loving and caring for Mom, but of embracing other residents and caregivers.

It was on a different Friday, a year or so ago, the notion of “Cookies for Arden” was mixed, rolled, baked, frosted, and served.

I was departing the city for the weekend. The cookies were essentially a bribe to the caregivers to watch over Mom for the weekend (as if they didn’t already do that with such care).

Regina, an older caregiver, was delighted when I produced the sweet bounty of colorful tea cookies boxed up from Busken. Jillian, Mom’s most consistent caregiver, groaned. She had been trying to lose weight, despite chasing after the ever-active residents and her obligation to feed, clothe, and bath 15 women and men.

When I held out the box, Mom’s hand aimed for one on top. She grabbed several cookies, denting the swirled frosting on each.

Another resident, B., who was charming and cunning all in one instant, beckoned me towards her. “Hey, I’ll pay you if you bring me in a full box for myself.”

“And they better be Busken. Those Servatti cookies are Italian and they’re not made with the same butter as Busken.

B. had insulted a whole forest of my family trees and was clearly wrong in her presumption that Servatti cookies were made by Italians. The bakery was named after a cafe where the cookies were sold in Munster, Germany, in a location near the Church of St. Servatii, an Italian saint. And, the cookies were made by Germans. But B. also made a point. I, too, relished in the Busken cookies over Servatii’s.

Astounded by such reception, I erratically continued the tradition of bringing in the cookies. Always on a Friday, but not every week.

When I finally typed the entry Cookies for Arden in my calendar, I found that I routinely fulfilled my duties.

The same duty my mother once fulfilled on a September day, in 1994, for my marriage to Devin. My mother baked four of my favorite varieties of her Italian cookies. Pizzelles, rolled Italian cookies, nutroll, nut horns. She obsessively placed them in old May Company shirt boxes layered with waxed paper, and transported the goods from northern Ohio to Cincinnati in the back of Dad’s suburban. My entire family relayed the cargo across Fountain Square through Oktoberfest to our wedding reception at the Banker’s Club, ten stories above.

No image better signified Mom’s dedication to cookies as consecration than that of white department store boxes filled with cookies, bouncing along the heads of siblings towards the delicacies’ eventual consumption that night.

No matter where I am in the world – at home with the dog, in Washington Park, in Oregon or northern Ohio, if its Friday, Cookies for Arden pops up on my phone screen. And I smile.

On the most recent Friday, the cue flickered on my screen while I was in the midst of a neighborhood walk through West Price Hill.

“Yes, yes,” I spoke out loud to the phone. “I got it.”

Hours after my shower, I stopped at Busken Bakery, only to find the bakery cases emptied. I was stupefied. “Where are all the tea cookies, where are the sprinkled ones?”

The clerk offered me a morsel of relief. “Oh don’t worry. They’re in the back. We got wiped out today. It was back to school week.”

In a matter of minutes, the clerk loaded up a box with piles of red, blue, white and sprinkled mounds of butter. (I do wonder who decides on the color scheme each week).

When I arrived at Arden, the receptionist spotted the gold container with a plastic window into the world of delight. “It must be Friday.”

I lifted up the box with a broad grin on my face. “You bet.”

As I entered the kitchen of Mom’s hallway, many of the women were still seated around their breakfast table, including Mom.

“Hello, girls.” I announced. “I’ve got cookies.

Miss J., the other Miss J., lit up at the word, “cookie.”

I sauntered over to Miss R., relegated to a corner table filled with wooden abacus like toys, and she took a pink one. “Thank you,” she mumbled and her visage returned to a blank stare.

Miss M., known for crying without tears ( which may be a condition known as pseudobulbar), accepted a green one from me. However, not even cookies could stop someone from overcoming that condition.

Again, Miss B. proposed payment for the entire collection. I politely declined, though she was good for her word and the money.

FullSizeRender (60)Mom finally acknowledged my presence – and that of the cookies. She waved her hands in the air. “Hey, hey.”

I inched towards Mom and presented to her the box resplendent with rainbows. Mom fingered three of them, placed the first one wholly in her mouth, and clasped the other two, again crushing the swirl of icing between her fingers.

I stashed the remainder on top of the microwave, where all the staffers would know where to look for the prize. The hiding place was like the cookie drawer in our home on Lincoln Street. But Mom never stored her good cookies there, only the packaged ones. The good cookies were kept locked away in old Charles’ Chips cans, like the sacramental offering they were.

At the last minute, I swiped a cookie for myself, to join in the ceremony of cookies. It was the closest I came to receiving a blessing that morning.

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

What Is a Weekend…At a Memory Care Home?

IMG_2461I missed the Luau Party date on Arden Courts’ activities calendar. So, I was surprised when at Mom’s on a Tuesday to find a luau was to occur later, complete with sweet and sour meatballs, tiki cups, hula dancing and steel drums. Sadly, I could not partake. I wished Arden would have hosted the event on a Saturday or Sunday, despite the fact I had been inconsistent in my attendance on weekends.

Arden Courts was not responsible for my social life. I handled that fairly well. But they were responsible for Mom’s, and by proxy, that meant me too.

I prided myself in my near-perfect attendance for major events that occurred at Arden Courts. With a flexible schedule and even more flexible husband, I have attended Teddy Bear teas, senior proms, Valentine’s Day dances, chili cook-offs (a risky proposition) and Catholic holiday masses.

My schedule with Mom was somewhat regular, somewhat not, and somewhat dependent on the weather. I charted my time based on if I could urge her outside or not, and how long one of us could withstand the stinky heat. Then, when winter blew in, as if Mom’s disposition was not already thrown into disarray, doors locked and Mom and I were stuck staring at a sun that clearly quit its job in December, January and February.

When Mom first moved to Arden Courts, I diligently attended to her every other day. On weekends, I dropped in twice – most weekends were only two days long. Thus, I had tried out all the activities. I actually watched Cleveland Browns-Cincinnati Bengals football games, complete with popcorn, in the community room with Mom because it was less painful than to view the game with my husband and son, and their pithy Cleveland jokes running in the background.

Family members and friends struggled with ways to stay engaged with loved ones, but I didn’t. I loved singing with the Merry Moores because of their corny humor. I loved Chaplain Geoff and his booming voice. I relished in Friday mornings, because the activity was like Jazzercise, only from the seated position. I called it a Dance Party, but Arden Courts called it exercise. Mom never, NEVER, moved an inch if she didn’t want to, so swinging to Jerry Lee Lewis, just to get her heart rate up, was not going to happen. Still, I was there.

Later, I started missing days on the weekend. Then, I skipped a full weekend, but showed up Monday, Tuesday, Wednesday, out of guilt, obligation and the fact that I had missed out on activities like the luau or race car simulations or Irish dancing.

And I told myself, “Its OK. You’re working too.” I secretly confessed my sins to my rearview mirror, instead of waiting for the priest to arrive at Catholic mass at Arden.

I missed one Mother’s Day. Possibly Easter. A Fourth of July (read more about why that date was important). One Christmas Eve (Try taking out an 80 something-year-old in southern Ohio sleet and see if your loved one speaks to you again.)

Mom didn’t know one day from the next. She didn’t know if she missed hula-hoop class, for which she might be thankful. Or if she skipped communion, which the Eucharist tended to stick in her throat since she had been prescribed a soft mechanical diet.

But I knew. And I knew Mom had never missed a track meet of mine. She postponed cancer treatments to travel to Oregon when Davis was born. Mom gave up weeks to help during my first husband’s cancer diagnosis and in my next days as single mother.

She had a long record of showing up. “Wherever there was the need,” she said. That included toting six-dozen, neatly-boxed Italian cookies to Cincinnati for my first wedding reception, and a repeat of that Herculean effort for reception number two. She knew how to show up. And she filled that space with who she was.

These days, Mom and I have to get creative in how we filled time. Her hourglass rotated unceasingly, as if before the sands of time ran out, the glass automatically flipped when neither of us were looking.

download-2In those moments, time became seamless and nearly weightless, as a scene from Downton Abbey with Violet Crawley, Dowager Countess of Grantham, played in my mind, complete with British accent.

At the dinner table, Matthew Crawley is speaking about a job.

His father-in-law, Robert Crawley, Earl of Grantham, is incredulous. “You do know I mean to involve you in the running of the estate?”

“There are plenty of hours in the day,” Matthew responds. “And of course, I’ll have the weekend.”

The acerbic Viola interjects. “What…is a weekend?”

It was hard to lose hours with Mom, who couldn’t comprehend the dimensions of her space and time. But the sands of time kept rotating, and it was only silly humans who attached actual schedules to our time to love.

It was a Friday. It had been three days since my last visit. Mom was seated outside, in the shade. I tugged at her sleeve and kissed her on the cheek. “Hi, beautiful.”

FullSizeRender (33)Mom shot daggers at me with her hazel eyes, as if accusing me of skipping church on Sunday and daring me to produce a church bulletin with the current date.

Maybe she still knows what is a weekend after all.