What I Wore When Mom Died – Part II

(cont’d from Part I)

My wakeup call was a text from Beth. She had checked on Mom before a training class. Mom was still holding steady.

I rolled out of bed and stumbled through the unlit bathroom. The skirt I hadn’t worn from yesterday lay mangled beneath last night’s ripped jeans and I thought about when I was a kid, I hated wearing skirts and dresses.

I was a tomboy and my thicker legs always looked like tree trunks beneath the canopy of a skirt hem, legs like those of my Grandma DeLuca. I chose to don pants. Still did. When reaching for comfort, I aimed for the hangars with pants. In the writing world, those who plotted out their story were called plotters, and those who operated by instinct were called pantsers. I was the latter in writing and in life.

I wasn’t ready to decide attire for the day, so I slipped into running gear, poured my coffee with eyes partly closed and scurried out the door for my morning walk. My legs felt heavy as an elephant’s, so I trudged around and around Washington Park, hoping my sleeping Music Hall muse would wake. I stayed in close proximity to my street, though my fear of separation from Mom had dissipated thanks to Stephanie’s wisdom the night before.

Once back home and out of a quick shower, I seized the skirt, shook it out, and writhed my way into it. Decision made.

Though rare, I brushed some powder across my brows, growing thicker in my lack of grooming, and hung my favorite earrings over my lobes. I lugged all my bags, one filled with headphones, nail clippers, nail polish, things I had always carried to for Mom, for our “spa” days, along with my bag of electronics. I didn’t know how long I would be sitting that day.

When I arrived at Arden Courts, Janice was running a warm cloth over Mom’s forehead to bathe her. I went off to seek solitude in the bathroom then strolled outside. I wanted to absorb the energy Mom always took in those mornings as she and I ambled through our day. Though we had always tread on the same sidewalk, our experiences were vastly different, as Mom clutched my arm for dear life and I grimaced in return.

The sky revealed a certain blue steadiness. Not a cloud anywhere. I walked back towards Mom’s courtyard and I caught a glint of what always caught Mom’s eye – the shiny tin roof vent.

Mom's BenchI headed to the bench, our morning bench where we sat in the summer sun beneath the eaves, catching only rays on our legs and the chimes rang as the breezes picked up.

When I entered Mom’s room again, there she was, cozy, restful, this time wearing her favorite shirt. The shirt was the color of sunset, a blend of oranges and pinks and a few sequins tossed in for glimmer. Janice had tracked down the article some time that morning, or it had appeared as if by divine intervention.

I knew then that would be the day my mother would die.

Despite how much I hated doing so, I lifted up the sheet to observe Mom’s feet, they were no longer dappled with purples, but now were deeply so.

Also, Janice had turned on some Sinatra music on the CD player. Silly me, I had erred the day before in not turning his voice on full blast.

Mom’s coloring had returned to her lips and she appeared comfortable even with her erratic breathing.

Deb, the hospice nurse, arrived shortly after. In between chatting about her chickens, she fussed with taking Mom’s vitals.

And in one exchange of looks, we both knew.

After charting her findings, Deb broke through the silence. “I asked the nurse to change her meds to every hour,” she said about Mom receiving Roxanol. I nodded in agreement— and understanding.

Sitting in my skirt, a whoosh of cool air circled the room, sending a current of goose bumps through my legs, making me wish I had dressed in jeans. The breeze had snuck in from an open window.

Soon, the activities director, Becky, joined in and we cracked jokes about care homes installing garage doors in resident’s bedrooms, like they have in craft breweries nowadays, so anyone could easily gain exposure to the outside elements.

Seated in the rocker, I twisted toward the sunny window where the blue skies were like a teaser and directed my gaze back through Mom’s doorway, evaluating. “Wouldn’t it be great if we could roll that hospital bed right through the door for Mom to get outside?”

There was an awkward moment of questioning until Deb said, “We can do that. If that’s what the family wants.”

I was family. It’s what I wanted.

In a matter of minutes, five staff members, including Janice, swarmed in. They wrapped Mom in her sheets as if she were in a papoose, and cradled her in their arms as they slid her across the bed and into the reclining wheelchair, while I handed off pillows for the various gaps between Mom and chair.

I knew where to wheel Mom. The exact spot where the sunlight breached the magnolias and the birch, where the sidewalk split into a “y” and every time, Mom tugged one way and I tugged the other, because my way was the long way and Mom’s way led to the dead end.

Seconds later, Mom was outside in the sun, and I settled the chair between patches of light and shade, with her face still visible to the sun. I texted my siblings and my husband. Mom is outside.

Mom is outside, I chanted to myself as I selected my Sinatra playlist to shuffle through on my iPhone. Caregivers and staff stopped by and marveled at the sheer genius of such a simple gesture.

The sun’s intensity was extraordinary that day, tinged with enough heat to make me believe I could live outside forever. Mom, too. But soon, the sun’s heat on my face seared through to my insides and therefore Mom probably wasn’t comfortable either. I maneuvered her chair back into the flecks of light through the trees.

A nurse came by to administer Mom’s medication at 10:00 a.m. And Beth arrived, as if on cue.

In the space between idle chitchat and quiet buzzing of bugs, and Sinatra singing Blue Skies, Deb hushed us. “Annette and Beth. Hold your Mom’s hand.”

Mom’s breathing had been labored and slow. And now halted.

We waited. And waited. And waited. My heart pounded. Mom’s belly didn’t rise. Her chest didn’t fall.

Deb called out the time of 10:33 a.m. As Beth and I had grasped Mom’s hand in ours, Sinatra’s words wove their way into the moment. “…the tears were hard to hide/And we just couldn’t say goodbye…”

There beneath the calm blue skies of a summer day, my mother was set free.

Freed from the confines of the wheelchair, the dark recesses where her mind might have wondered lost, from what society might see—an aging woman with dementia, and freed to reunite with a presence greater than herself.

After Mom’s last moment in the earth’s sun, family and staff gathered in the courtyard with the chaplain to lift up her in prayer. We said the Our Father and the Hail Mary. Then, I shared a story about the first prayer I learned from Mom.

Mom’s firstborn, David, had died two days after his birth. So when we knelt as a family to say prayers before the sewing machine turned altar, we recited the Our Father, the Hail Mary and a little prayer Mom had devised. Please, Baby David, watch over us and help us to be a good, kind and loving family.

I repeated the prayer over Mom’s body, one I imagined now reunited with Baby David. The chaplain noted Mom could now complete her final act of mothering. I thought otherwise: Mom was being re-membered with her firstborn.

In my mother’s final weeks, I wrote in a journal entry, “What does victory look like? Victory will be Mom leaving me.”

Victory. My mother had won the battle with her dementia through sheer muscle memory, by programming into those around her what was important in her last days.

Before they carried Mom away, I reached for her soft cheeks, the ones I would never stroke again. The ones I had nuzzled up to time and again whenever I greeted or left her.

Yes. We had made a pretty good team. Mom was outside one final time. And I wore a skirt, and that breath of breeze that had wafted around the room that morning and given me chills led me to the hope of Mom, in the sun.

But I wore something else that day. Something more sublime.

A smile, inside and out.

I couldn’t have persevered through Mom’s dying or later described the events that transpired without breaking into a smile. If others thought me rude, disrespectful, or insincere, I didn’t care.

I was joy-filled.

Mom and Annette Orange ShirtWhether there was another life for Mom was up for debate, but what I had witnessed was a beautiful death.

And while I would miss the warm shivers up my spine when my mother hugged me or the residual ache I felt in my wrists from her fierce grip, Mom would live on in my joy.




Filed under alzheimer's, arden courts, dementia, mom, Opening Day, something meaningful, Uncategorized

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.



Filed under alzheimer's, arden courts, best place, dementia, flower moon, Uncategorized

Hey Mom, It’s Me, Annette

The pros say, when writer’s block hits, write a “Dear Mom” letter. And yet, “Dear Mom” sounds a lot like “Dear John”, and this turned out as the latter.

Hey Mom, It’s me, Annette.

Mom Best LastI watched you sleep today, your head nodding to the tune of the tapping of leaves in this extraordinary summer of opposing weather patterns and tug between life and death. The red cardinals continue to flit about. Two in the past two days. I know what that means, if I still in believe in transcendence.

Today, no headphones only the sounds of summer. We’ve always had our summers, didn’t we? When I would flip my schedule so we could roam outside, before the heat sucked the life out of both of us. But the summers I ruminate on now are of long ago, of a backyard plastic pool filled with bugs and cracked on its lip, five kids running through the sprinkler, banana seat bikes parked, semi-respectfully, a clamoring of what’s for lunch? A lunch of Italian bread, Italian salami, Roma tomatoes, always Italian something or something Italian. We were always something Italian.

I’m struggling, Mom. Enzo died a month ago and his loss tore open the wound that has been my loss of you. Science says you are mainly heart and lungs now, living with limited cognitive ability to will yourself awake, asleep or away, away from a life neither of us could have imagined for you, but one you have lived regardless.

But me, I am all spirit, or trying to be, and not of science. So I wonder, what it is in your spirit that has compelled you to hold on? You have outlived modern medicine and yet there is still something locked inside that must come out, that you must let go.

But, its not you who needs to do the letting go, is it?

It’s me.

Everyday I have said goodbye, because the person I have loved today will not be the person I greet tomorrow when we remake our moments all over again. So, how do I say goodbye to someone I said goodbye to a thousand times before?

When I trekked to Central School on my bike, a canvas backpack slung across my shoulder blades as warm weather settled in. Years, later when I left for Oregon, pregnant. After you visited your new grandson and put up dozens of jars of blackberry jam. After telling you Devin had been diagnosed with leukemia—over the phone, some 2,000 miles away. When I moved back to Cincinnati, reluctantly, and offended you because I didn’t want to come “home”. When Devin died and after his funeral and after all the golf outings in his memory. After the hundreds of miles traveled in between. After I said, I do to Mark. Later, at the conclusion of our sojourn to Italy.

And then? Then I lose track. I lose track of when you started losing track of the proverbial keys, the order of your grandchildren, the ability to cry over Dad’s death and all those times I rushed into your arms – you hidden away – me – hiding away – when life became intolerable or scary or both.

This letter was meant to be my official declaration of letting go – we always had our letter writing, didn’t we, such that I wished you could have learned to turn on a laptop before your mind shut down. Perhaps you could have typed or written what was still in your spirit.

So yet again, I have to suppose. I have been supposing on your behalf for a long time.

Suppose you are afraid in a hospital bed, alone, the darkness coming. What if you are in pain and too fearful to move and you can’t tell me? Suppose you’re mad at me, for what I don’t know? Suppose you can actually feel the joy that is apparent in your innocent, wide smile? A smile that still kills when you open your tired and droopy eyes and see a face that brings warmth to your heart.

What if I have held on too tight for too long with too much of my own strength, crushing yours. And suppose it is not been my strength but my anger instead?

What if I simply said goodbye just one day without all the fuss and locking my arms around you?

What if I was silent for once, will I hear you leave?

Suppose I let you go?

In a matter of days, I will be stepping on a plane, departing for reaches known to you and me—Oregon. I’ll be watching Davis graduate, but more importantly, I’ll be sleeping in a place that has carried me, and carried also my grief. I’ll be making a pilgrimage to a land where I have learned to let go time and time again. It is my touchstone in a way that you have become my touchstone.

And I will have to trust, in you, that you will know when to release that tight grasp of yours, the one affectionately referred to the “death grip.” I will have to trust in my sisters and brother that they too will work side by side by hospice to give you the space and time for the comfortable death you and I have worked hard for over the years to achieve.

And I will have to trust that if you leave me, before I return, we have already said what needed to be said not with our words, but in the silences, between the beats of our hearts.

Love you, Mom.



Filed under Uncategorized

My Mother’s Lists

This is the third in a three-part series following Mom’s fall.

Hip replacement… Thyroid malfunctioning when her doctor suggested calling hospice…removal of her appendix and some other little thing the doctor said was blocked and caused her stomach to blow up the size of a basketball.


In the driver’s seat of the wheelchair, pushing Mom from behind into the great outdoors and rampant humidity, I ran down the list of the physical obstacles she had overcome in her ninety years.

My mother had been a famed listmaker. Groceries for Thanksgiving. 16 for Christmas. Dinner for Christmas. 4 Weeks before Easter. Easter Menu. AMC Movies 4:00 – 11:30 p.m. Her work in the kitchen was unparalleled because of her lists.

Now, Mom was unknowingly generating new lists of maladies, of struggles not within her cognitive control.

Her record of medical speedbumps she encountered in her long life, excluding the overarching dementia, read like a multiple-choice answer on an MCAT exam.

The house doctor at her care home always sought me out after visiting with Mom, following any one of those medical hiccups. “Your mother definitely has nine lives. There she was smiling at me today,” the doctor claimed. He was young, handsome, brownish skin of Indian descent. Yes, she would smile at him.

Like always, I nodded and thought, The hospice chaplain said Mom might have 13. I held out for more.

As I circled around the courtyard, I kept counting. Anything to keep my mind off the fact that Mom was now confined. Or that she had slept through lunch. that she had lost weight, but not enough to be too alarmed, only enough to take notice.

Three seizures
c. diff
A fall ending with black eye
Eating flowers and leaves – real ones and the fake ones
Swallowing soap, almost forcing a tracheotomy
The latest fall, outside. One of the nurses said,
“She was just lying there, smiling, on the rocks.”
The Neil Diamond song, Love on the Rocks,
plays in my head each time I consider the accident
that resulted in a fractured hip.

I added one that I missed. Maybe the only episode I missed altogether. Breast cancer. She and my father hid the diagnosis from me (but told my husband) while we were living in Oregon and I had given birth to Davis four weeks early.

And then I added the most recent recent, deep blood clots from the non-movement of her leg and hip. Mom had now crossed the threshold of Ironwoman designation.

The sun beat down on the concrete. I could feel a whoosh of heat curling up from the sidewalk. If I could feel it, so could Mom.

I parked the “car” beneath the shade of an umbrella and retrieved headphones from my purse to place over Mom’s ears. Today, Italian mandolin music. If there is a heaven, there will be many mandolins playing to her satisfaction.

My eyes zeroed in on the raised flower box as a few musical notes slipped out of the earbuds. I leaned back and my eyes lids closed by themselves. How hard I had worked at keeping Mom safe, healthy, away from chomping on the plastic or real flowers or plants that dotted the courtyard or interior landscape of her care home. Except the tiny tomatoes which would flourish sooner rather than later this summer. We always picked one or two, so she could taste of her ancestors.

The days had been long as I spent hours reviewing Mom’s past, my past with her, her future in my rearview mirror. It had always been a challenge to accept this work of Mom. I wasn’t the oldest and I was number three in the lineup of five.

I thought of my siblings, of being a child of Mom, of all Mom’s children. Delving into the list of emotional or psychological aches of Mom’s was like devouring a year’s worth of Lifetime Movies.

Her birth father dying before she knew him
Her first-born son dying two days after birth
Mother dying of while Mom was in her thirties
A daughter with an eating disorder
The breakup of the family shoe store business
and Dad’s loss of livelihood.
A son-in-law succumbing to cancer
A daughter surviving cancer
Another daughter with surviving cancer
A daughter battling alcoholism
My father’s death
A daughter now a stroke victim, the tragedy Mom doesn’t know.

I understood why I always wrote from the lens of loss.

I started tapping my toes, my fingers. The mandolins couldn’t calm me. I was ready to move again. My arm muscles twitched as I gripped on the wheelchair handles, located at too high a height for me. Who needed a workout when I could push Mom + chair? What I needed was distractions.

I started to push again, over every crack known to me in these sidewalks, over all the gradual inclines and bumps and declines.

I knew which slivers in the base of the white-washed fence the squirrels ran through and wished the barrier was at least transparent, though too many residents would act like the birds that flew into windows when they saw their reflection, thinking it was another bird. It was not a pleasant analogy but an apt one.

Having tired of my exploration of all the square inches that made up the space around the courtyard, what I returned to were the flowers. What I looked forward to each spring and summer. What would grow here? What would die? In a kind way, it was a meditation on the residents themselves.

I was reminded of the Irish poet, Michael Longley, and his poem, The Ice Cream Man, a eulogy for the owner of an ice cream parlor who was murdered. In the poem, the poet drew parallels between the ice cream flavors in the shop and that of the wildflowers in Burren he had been cataloging.

IMG-7330I had stopped carrying in live flowers to Mom, because of her “eating habits”, though I’d rather she was mobile enough to consume them. But as we wheeled and wheeled in this endless circle of life and death and remembering and memory, I named for Mom the flowering plants of Arden Courts.

Russian sage
Sweet potato vine
Sweet Melissa
Black-eyed Susan
Asiatic lily

When I could name no more, I stopped orbiting and rested beneath the canopy of a birch tree. Janice, Mom’s caregiver, carried out Mom’s plate of lunch.

After I spooned a few bites of chicken into Mom’s mouth, she gave a little hack. She needed Gatorade. I handed her the cup. While she drank, I looked up or away or into the cloudless sky. Only for a second.

Mom squealed.

Gatorade had dribbled down her chin and splashed onto her a Jolly Rancher blue-raspberry-colored top that matched the hue of the sports drink.

I hurried to wipe up the droplets and swept the cornbread crumbs off her pant legs. From her right side – her good side for her hair part and failing hearing and sight, I said, “I don’t know what the future holds for you, Mom.” The tip of my nose touched hers.

Softly, Mom responded, “I don’t either.”

Both sets of our eyes were open, teary. Hers from allergies. Mine from grief. Her eyes oddly matched the blueish top. Their coloring had been shifting in tint and depth and I wondered, when we die, Do we finally get the color eyes we want? And the clarity too?

It was such a tender moment.


I brushed at a wisp of her gray hair fluttering like a butterfly in the breeze and cupped her scalp, still clinging to its thinning hair, in the palm of my hand.

Mom swatted my arm away. “Don’t you dare,” she said through clenched teeth.

I could have gone on with the lists that day, the residents I missed, the entertainment activities I most enjoyed, caregivers that had departed for other employment, and the occasions Mom had cussed at me.

But only one list would ever stand out. The number of times Mom had recognized me – known to me only by some pin-prick of light in the eyes, sort of way – and called me, “Honey.”

It wouldn’t add up to nine or thirteen. A better approximation might put that number closer to a few moments several times a week for over six, no, over fifty years.

But, in my imagination? It was infinite.

Leave a comment

Filed under Uncategorized

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.



Filed under arden courts, dementia, Uncategorized

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.



Filed under Uncategorized

Fight or Switch?

Id Rather fight than switch

“C’mon, c’mon.” Mom gripped my hand and whipped my flailing body in front of her.

“Jean, The Bean. I love it when your mamma’s feisty,” a caregiver said to me as she squeezed past Mom and me in the hallway.

Feisty. That was one word I would use. I had a few more.

I had just arrived from traveling in Spain for ten days. The day before my departure, I visited Mom, but always dreaded – DREADED – my return, as if my absence were a sin and Mom the disapproving priest doling out penance after my reappearance in the confessional.

IMG-6959In the interim, Mom had experienced an issue while I was out of the country. Mom’s depth perception was no longer what it was when she caught her kids smirking or mimicking her out the corner of her eye. With her peripheral vision now on the wane, Mom followed her Velcro comfort shoes-clad feet clad without looking up and bumped into Miss M. in the hallway. The two were found in a tangle on the floor. That was the story, though I had often overheard my mother commanding various residents to “shut up or stop your talking.”

After four days, the peachy skin cuddling Mom’s right eye had turned to a mix of colors in an Edward Hopper’s painting.

Mom pulled at my slick winter coat sleeve and yelled again. I yanked on my arm and the sleeve slipped from her grasp. “Please, Mom. Stop.”

I stared deep into my mother’s graying eyes swimming with water. A yellow patch of skin spread above her injured eye and an inflatable pool of fluid floated below.

And I burst out laughing.

Mom’s face grew red. She roared back.

She didn’t know or understand my private joke.

I wasn’t laughing at Mom, or at her black eye, but reliving a similar moment that technically, I only knew on Polaroid paper, a snapshot taken after a fall. A picture for which my father would have been complicit because Mom always said, “Ette, get the camera,” as opposed to doing it herself.

In 1963, the Tarleyton cigarette makers produced an ad targeted to customer loyalty. Each commercial showed an actor doing something rebellious and rolled out the tagline I’d rather fight than switch. In one instance, an old woman is shown rocking on her chair on a porch watching over her neighborhood being razed for condos. Shown as defiant, the old woman then utters the slogan and turns her face, revealing a made up black eye.

For reasons now obvious, this commercial would never appear in today’s ads. Back then, the tagline easily made itself at home in 115 Ridgeland Drive.

I had always heard the stories from my mother about a generic cigarette commercial. As a youngster, I never understood the ad. But I understood this. I was nearly two and my mother – it was clearly her handwriting – was making fun of me.

Now, I laughed harder.

I was tired. My body was still living and breathing six time zones away – my spirit and stomach too. I had returned to a sick dog at home, and, after visiting some of the world’s most famous museums and witnessing art come to life, the last place I wanted was to be in a memory care home where life was a study in patience and not hues.

In returning, what I witnessed, was not the mother I left behind. Not just because of her black eye. But because of her stoop that I could measure had added a half-degree more to its curve. Or I passed by rooms of residents and spotted the “angel” sign on the a doorway or I observed a certain resident, who I used to chat with about her father owning a bank, one of the most cogent women the center, now slumped in a wheelchair.

The outside doors were locked due to chilly springtime temperatures. The alarm didn’t stop Mom from pressing the arm in an attempt to break out. I circled her away from the vicinity of the back door.

A long-time resident, Betty, looked up from her acrostic puzzle pad, put a pencil in her white updo, and called to me from her rocker. “Better watch out or she’ll give you one of those of too.”

Didn’t I know it.

Fearing another fall for Mom or that she would take a swing at me, I kept my eyes glued on her. Twelve years ago, my parents accompanied me to Italy. My recent vacation in Spain had reminded me of my mother on her first and only European trip, youthful and brave, getting on a plane mere hours after being released from the hospital for a condition most likely anxiety induced.

I saw her and my father sharing one suitcase for ten days, while now, I had my own stuffed with blouses I didn’t wear because of unusually cold weather.

I glimpsed a mother relishing in her four daughters seated around the Trevi Fountain.

The problem with Spain was that the country had reminded me so much of Italy. The other problem was that it was not.

The pastries in Spain never passed the taste test compared to Mom’s sweets, ones that were probably no longer Italian, but they were hers and they were ours.

The Spanish language, though I had been schooled in it for many years, did not come easy for me, but a quick audio course in Italian hung on for years and emerged easier than my Spanish while in Spain.

I just couldn’t reach my mother from Spain, whereas in Italy, when I had traveled there without her, I could stretch across time and centuries and terracotta tile. And there, there Mom would be.

All this I caught in a reflection of in the yellowing, bruised eye on Mom’s right eye and the normal eye on the her left side. A face now scrunched up, the diamond of skin cells thinning, shrinking.

I was trying to envision that youthful woman while I was scorned by the ninety-year-old version over the laugh track of a Golden Girls rerun.

Another caregiver walked past. “Jean, the Bean,” she called out.

Mom gazed at the cocoa skin of the young caregiver and broke into a smile.

It was okay, I thought, just keep Mom moving, traversing the same hallways we had made tracks in for years, so much that I swear they’ll replace the carpet soon because of us.

But it was not.

“You are such a stupid, what, why, hit that over there.”

That day, Mom was not okay.

I love it when your mom is feisty ran through my head again. The notion of practicing yoga later that evening returned my breath to me.

Mom squeezed my hand with more might than a Ms. World bodybuilder. If Mom was in physical pain, she could have my hand, my arm, and a leg. If she was in emotional distress, well, she already had my heart.

I’d rather fight too. That’s what’s kept Mom and me going all these years.

And for Mom, sometimes, I’ll switch to her side.


Leave a comment

Filed under Uncategorized

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.



1 Comment

Filed under Uncategorized

How To Center Care on Story

Storybook Image

This month, Pauletta Hansel and I will offer a Cincinnati-based workshop for professional caregivers in the dementia field. While attendees will earn CEUs, they will also earn something else. Respect for not just the person in their care, but also for the stories surrounding that person. The narratives that have kept that person afloat these many years. The love inside each of those arcs.

In the past, we have offered writing workshops for caregivers and for individuals experiencing dementia.

This workshop will allow individuals to observe at the person in their care as in the whole, what is seen and unseen.

Read more about past workshops or read Pauletta’s writings on “why write about dementia.”

We look forward to seeing you at any of our workshops. If you would like more information on offering workshops where you live, email me at amjwick@gmail.com.


Writing Workshop for Pros 2018 FINAL-page-001



Leave a comment

Filed under Uncategorized

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.



Filed under alzheimer's, arden courts, dementia, mom, Uncategorized