Category Archives: alzheimer’s

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.

 

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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.

 

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What Makes for a Good Day?

(https://findyouinthesun.com/2017/11/17/what-makes-for-a-good-day)

 

Mom CatchlightI hovered behind Mom’s chair while she sat at a four-top kitchen table branded with grape juice fingerprints. She pleated a white nylon napkin and the napkin refused to hold its crease. Over and over, Mom dragged the side of her palm across the napkin as she had done for many years with tatted pillowcases and Dad’s dress shirts.

Is this what the famed surgeon, Dr. Atule Gawande, had in mind, when he asked, “What does a good day look like?”

Dr. Gwande had written a New York Times best seller, Being Mortal: Medicine and What Matters in the End. I never read his book. I had lost a loved one out of chronological order and already knew what mattered.

But the doctor had returned as guest on an On Being podcast, and the question, What does a good day look like, a question that transformed his practice, now played like an earworm worse than my mother’s Sinatra tunes cycling through my brain.

Thanksgiving was nearing in Mom’s care home and leftover lunch scents of turkey and gravy wafted up toward the ceiling.

I swung my body around to peer into Mom’s field of vision, a field rapidly diminishing. This summer, Mom began to point her nose down, most often as she walked. I thought her back was giving her fits, or, at 4’ foot 7”, Mom had shrunk again. But in dementia, loss of peripheral vision was common. Her perspective had been altered not by choice but by disease.

“Hi,” I said and closed in on Mom’s face.

The caregiver had just given my mother a shower and notes of lavender and almond oil emanated from Mom’s skin.

Staring at another resident or the inaccessible, frosty outdoors, Mom pinched a portion of stuffing and dropped a blob on the floor.

“Hi,” I uttered again. As I spread my feet apart to lower my face to hers, my boots slid across gravy puddling on the floor. “Ewwww.”

My outburst cut through her fog.

“Hi.” Mom’s tone was flat.

I leaned over and enveloped Mom in my fleece jacket.

She pushed my arm away and my purse slipped off my shoulder—into the stuffing.

“What do you want with that? Oh go on. Don’t do that. You should when you…” Mom’s loud rant caused heads to turn.

To the average person, Mom’s utterances made no sense. To me, her gibberish translated to, “Don’t hug me. I’m not in the mood.”

Mom’s outburst continued. “No, I mean that one.” She jabbed a finger into the air, judging another resident who had knocked a plastic puzzle piece on the floor and shattered the silence that was more jarring during meals. Mom always reproached other residents for looking, speaking, eating, or living.

I had rushed to visit Mom between meetings and a car appointment, plotting my route to include a stop to see her. Now, I stepped back to take in the whole of the scene playing out before me.

Dr. Gawande informed the interviewer how people in the end stages of their life possessed priorities beyond just surviving. He recounted a story of a woman who would die 48 hours later. She had asked if she could take her grandchildren to Disney World. But it was too late. The medical community had missed her wish by planning for what the doctor could fix and not implementing other notions to support her well-being.

Dr. Gawande defined well-being as: the reasons one wishes to be alive.

I had overseen my mother’s care for five years and longer, if I counted the years she had hidden behind the haze of dementia. Over the course of windy blog posts, pealing laughter, and unstoppable tears, I pondered what were the reasons Mom wished to be alive – other than to torture me.

On occasion, I entered Mom’s memory care home and was forewarned by staff about Mom’s mood, only to find her in a lighthearted disposition and joking about playing kickball inside while another resident screamed out, “Kickball is an outside game.”

Other times, in the exact same setting, my hopes were dashed by my mother’s moods, which, like a Ferrari, went from stillness to growling in ninety seconds.

And so, my mother was mortal, but she was not dying in the traditional terminal sense. It was more difficult to answer the question, “What does a good day look like?”

Taking her grandchildren one last time to Disney World, which could be accomplished only through the feat of virtual reality?

Reading one last book of Erma Bombeck’s or watching How Green is My Valley or Cat on a Hot Tin Roof with Paul Newman one more time?

Rolling out her revered ravioli to the precise thinness to not explode when slipped gingerly into the water, pushed ever so slightly under the roil, and lifted out with slotted spoon and coddled with homemade sauce?

Those events would happen at a conscious level for which Mom would have no grasp of the joy or meaning they might carry.

I wriggled Mom’s chair out from beneath the table.

She squeezed my hand and gritted her teeth. A grrrr rose out of her vocal cords.

Like a mechanic jacking up a car, I lifted her up through carefully placed shoulder anchors and footholds.

Slowly, Mom straightened. One foot followed another until she was erect and on her way. Her legs picked up speed.

We traversed a third of a mile that afternoon.

What does a good day look like? For eight hours with one caregiver, the day appears maddening. For another set of eight hours with a different caregiver, the time is filled with joy. But what does a good day look like for a family member with an overwhelming responsibility to figure out what a good day is for someone else?

I wasn’t around in the years when I should have been asking those questions. I wasn’t the kid chatting about boyfriends with Mom over the phone. I was the kid who challenged my mother’s beliefs or reported for duty, and left.

My time with Mom ended an hour and a half later. I often berated myself for leaving when I had time available, but ninety minutes was heroic for those that didn’t actually work in the dementia field. It took pots of patience for me to cook up ways for Mom and I to interact in that stretch around the clock.

Mom reached for my purse as a handle and I stumbled backwards. “Here. Here,” she warned as I nearly backed into a fake streetlamp.” Translation: look out.

Finally, I nudged her back. We were caught in tug of war.

I was her gravitational pull as she scooted towards a bench and shot more invectives my way.

She plunked down on the tufted cushion where the afternoon sun shone low through the thinning oaks and maples.

I propped up Mom’s arms with two fringed, elephant pillows. Her feet, shod in black Velcro shoes, swung off the ground.

I kneeled in front of her, slowed her feet to standstill, and placed my hands in her lap. “Mom, I’ll see you later.”

“What’s that sweetie?” She tapped the tip of my nose with her index finger.

Did she really mean sweetie? And was the 90 minutes of haranguing worth one moment of this adoration?

Well, Dr. Gawande, it was.

 

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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

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Still Life

Carolina Marches

My life with Mom was not always about Mom’s life.

The day after Memorial Day, she and I strolled outdoors while she was arguably distraught with the landscapers who had left a mess of mulch spread across the sidewalk while sprucing up the garden beds of Arden Courts.

She simultaneously scowled at the young men, while also brandishing her trademark, I’m so sweet, smile.

Then, her eyes locked in on the benches. She marched straight for one in the sun and sat down.

In a little while, Jack wheeled outside to join us. Jack was younger than Mom, was afflicted with Parkinson’s, but recalled Mom’s name and remembered I was her daughter.

We filled our minutes with talk about what constituted the perfect summer day, and also, how to be on the lookout for sunburn. He told a story about his mother, seated on boat for eight hours, who never once considered she might have needed sunscreen and, only later, screeched at the mere touch of her arm.

The activities director joined us, and produced earphones and iShuffles for both Jack and Mom. The implements were part of the Music and Memory program recently instituted at Arden Courts. Mom’s playlist was crammed full of Sinatra, while Jack’s contained Simon and Garfunkel, and there the age difference was apparent.

After the director departed, Jack realized his iShuffle wasn’t working, so he struck up a conversation with me again. Mom’s headphones had been connected to my iPhone, so I let her mind spin on to the tunes on my player while Jack and I conversed.

I must admit to the difficulty of sitting with someone with Parkinson’s. While Jack stumbled over his words, I wanted to jump in and finish his sentence, despite knowing that was wrong, and also frustrating for him. Numerous times, I held back, held my breath and waited for just the right word to come from his mouth and not mine.

FullSizeRender-102The sun’s intensity that morning had been too much for all to bear. I escorted Mom inside to the join the resident cat, and Jack came along, courtesy of the activities director.

As I tried to part ways with both Mom and Jack, Jack asked if I could stay a few more minutes. He had something he wanted to show me. I was already late and promised to track him down when I returned. In hindsight….there was always hindsight.

Jack had been an avid photographer when he was younger and less afflicted. Of all the reasons he offered for his passion, the last two stanzas of the poem stayed with me. Now, Jack and I were forever linked by art.

 

Still Life

He once shot photographs
of marshes in the Carolinas
– before the shaking
and stuttering –
when his hands were steady
and he could capture a still life
instead of leading one.

We are outside
on a sky blue day
breeze whispering in our ears
and the wheels of his chair
roll backwards
into a bed of irises
where the tires are stuck
in a triangular rut.

He asks, Please, help,
and for an instant
his life is immobile
caught in that moment
between harsh cold concrete
and soft landscape green.

Later, I show him a book,
The Art of Ages,
a photographic journey
in black and white
through the 20th century
of people and how they lived,
sometimes in filth,
sometimes in stealth.

I only photograph still life,
he repeats.

He wants his camera back,
won’t mess with a new, old Polaroid,
and wants his computer too.
Maybe his brother will bring it,
but not his son
who he sees every six months.

He wants to know
if I have photos of my mother
when she was younger,
as Mom’s head bobs into her chest
and she snores away
the perfect silence of a summer day.

Some, I tell him. I have some.

I keep mine altogether.
The words sputter from his mouth
as he pushes off toes
and his chair rolls
backwards in time.

I take photographs,
he stammers,
because I get to keep
the life I lived.

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Swipe Left and Right

IMG_0446I swiped left and right between the photos.

No, this was not on Tinder. This was in real life. Mine and hers.

Mood swings were at the top of my most despised moments with Mom. I didn’t hate my mother in that moment. I hated myself because I’ve yet to learn how to adjust to her fluctuations.

But in between those moments, was everything that was life and death.

When Mom was cranky or ornery, my first reaction was always UTI. Bladder infections were common occurrences in individuals experiencing dementia. The infections created moderate to severe changes in disposition. Thus, when Mom’s mood swerved and curved like an Indy race car driver, my first thought was UTI.

True confession. My very first thought is Mom is dehydrated. Then, UTI. And because a UTI left undiagnosed for too long could lead to complications, panic sets in. I track down the nurse, or a caregiver informs me the staff has already told the nurse. Then, we wait on a person whose incontinent. It’s really not an exciting time. One of the caregivers will take Mom to the toilet and turn on the running water, to encourage output, so to speak.

My mother would be horrified if she knew I wrote about and shared those challenges. But, I reasoned, she and Dad could have named any of their children POA. They chose the writer.

Back over Easter, I was leading Mom to the Easter egg hunt when we encountered the Easter Bunny. The bunny stopped long enough to hug Mom, but didn’t speak. Did the Easter bunny ever speak? Mom should have at least recalled that, I presumed. But alas, some memories did not cross the span of time and neurons.

The Easter Bunny’s muteness was NOT acceptable to Mom. Several times she yelled out, “C’mon. C’mon.”

Anyone could read those words on her lips, and in between the lines of her furrowed brow.

Eventually, the Easter Bunny disengaged its fingers from Mom’s, while I slid my fingers into the crusher’s hands. We traipsed down the hallway towards Easter Brunch.

The brunch passed without incident, mainly because I maintained strict oversight in allowing Mom access to the orange juice and extra chocolates. Confined to a corner near the window because of our tardiness and Mom’s desire for light, Mom spent much of her time watching the youngsters anxiously waiting for the hunt to start. One little guy told us all about being in second grade while boasting of towering over my five-foot frame. Mom muddled through with the occasional angry outburst because she couldn’t follow all the conversations.

When a seat opened up in the main room, I guided Mom to an open table where she had a better view of the children processing in and out, and out and in. Then, I grabbed the bunny ears and ladybug antennae and fiddled with each, placing one on Mom’s head (this is where I apologize to Mom), and one on my own head (this is where I apologize to my children).

And Mom lips parted, first in a slight grin, then like the Red Sea, ready to swallow up all the jellybeans and life before her. In the span of a half hour, she was content again.

I lived a thousand lives in between a good moment and a bad. Her voice, when at optimal yelling capacity, reminded me of days she didn’t separate far from her rubber spatula when discipline was needed.

Copy of DSCN1093 - softHer voice, when saying hello to new faces sprinkled with sunshine, rang through to my heart, resounding of ten days spent in Italy, when I took my parents twelve years ago. I had never seen my mother more radiant than in those moments in the square in Siena, mangiare al fresco, called out by a carabaniere, or holding court tableside with a carafe of vino della casa in Fiesole, above Firenze, with her Italian-American daughters at her beck and call.

In celebrating Eastertime with Mom, I experienced the rising and dying and rising again of Mom to beat another infection or crush a daughter’s disposition.

Lately, at Mom’s care home, several residents had died due to falls or the natural cycle. Despite having spent countless hours in this setting, I never knew how often one could contemplate the shaky nature of our existence.

We are all one fall away from the precipice, or one flight away from opening the skies. We are one moment away from sheer joy or complete madness.

I swiped left and right, and prayed we wouldn’t have to do this again until Santa Claus arrived AND that Mom would here to scold him too.

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A Long Way to Tipperary

She rested her head on my shoulder like a child in need of a good read. We hummed along to Irish tunes floating through the halls.

It’s a long way, to Tipperary.” “Tipperary,” she sung back.”

I flipped through the pages of a worn Redbook magazine, Mom occasionally reading whatever words were in large print. When I landed in the Food section, a few colorful dinners caught her eye. Tagliatelle with Peas. Sicilian Pasta.

She read each headline, and I read the recipe below it.

“Oh my, that sounds a bit tart for me.” “Too salty.” My comments, not hers.

Instead, Mom took a page between finger and thumb, and tore one page then the next from the binding.

“Its just like we’re at the hair salon, Mom. Ripping apart these magazines.”

She burst into giggles. “Yeah.”

Then Mom handed the tattered sheets to me – was she expecting me to cook dinner? – and sang, “Tipperary.”

And together, we crooned, “But my heart lies there.”

It was a joy-filled exchange after a long day.

I had spent the morning and part of the afternoon at Refresh Your Soul, an Alzheimer’s and dementia care conference sponsored by Episcopal Retirement Services, listening with rapt attention to several inspirational speakers give rise to their own journeys.

I hadn’t planned to visit Mom afterwards. And yet, on those days, surprises emerged. If I arrived with cookies, expecting gratitude, or if I showed up with photos for her to view, my best laid plans, together with Mom and I, completely melted down. But in the rare instances for which I had no plan, were the brightest lights.

The conference had absorbed so much mental space, and offered me many writing prompts, that I preferred to be home. Oftentimes, I struggled with writing about Mom so she will live on in my memory versus sitting with her in the present while she is still alive. I decided on the latter.

After the conference ended, I drove a few miles up the highway to see Mom. As I exited the ramp, I careened around the curve, only to find an abandoned car on the side of the road with a familiar sticker on the bumper. Women Writing for a Change. My car sported one too.

I looked up ahead and spotted two forms walking along the burn. I rolled down my window. “Hey! Angela! What’s going on?” I was full of amazement that I actually knew one of the persons.

“Oh, I ran out of gas.” Angela looked at me like my appearance was the most natural event the world at that moment. Maybe she was a more fervent believer in Fate than I was.

“Well, hop in. I’ll take you and your son to the station.” The station was in view, and was technically only a half-mile away.

She introduced me to her son, and we sped off to the station. Her eighth-grade son and I waited for her to procure a gas can, having typical awkward conversations. Then, I drove she and her son as close to the car as I could come, given the access ramp. I steered back into the flow of traffic, remembering I hadn’t even planned to drive that stretch that day.

Paying attention to the small things, I was where I was supposed to be for the minute, the day, the month.

Back to Mom. I had found her sleeping in a kitchen chair. She always did gravitate to upright chairs. She found some comfort for her aching hips by sitting in proper posture.

She and I had walked for bit, listened to the Merry Moores Duo, and found ourselves navigating a number of magazines. Mom’s eyes grew wide as she perused the meal section of the Redbook periodical. She rarely ate meals that resembled gourmet. Much of her meal was pureed (soft mechanical), which still left some wiggle room for cookies. She’s never challenged in digesting cookies.

After we leafed through the Food section, and discussed our likes and dislikes for each dish, Mom laid her head on my shoulder again, as if she had consumed an entire meal and now prepared for sleep.

In actuality, late afternoon was Mom’s time of day to nap. Valerie, her evening shift caregiver once told me, “If I lay her down a little before dinner, then she gets through dinner, and has a nice comfortable evening.”

Sleep was coming on full-steam. So, I let her fall while my mind drifted back to the conference speaker.

John O’Leary, author of On Fire, posed a few questions to ask ourselves each day, and offered suggestions on how to reframe the answers given back to ourselves.

“Why me?” What about my life had offered the opportunity to care for Mom? And what blessing could I find in the day when given this opportunity?

John asked the audience to meditate on the question of gratitude while he sat to the play the piano. To understand what an accomplishment that was, one needs to know that John, as a nine-year-old, suffered third-degree burns over 100% of his body. Both his hands had been amputated. But his mother insisted he continue his piano lessons, for five more years.

John played “Memories” in the most hauntingly beautiful, but painstaking fashion. The audience closed their eyes and went quiet.

Participants were next prompted to answer “why me” and write to the gratitude that can be found in the disease of forgetting. What had come into one’s life, as a caregiver, that wouldn’t have come otherwise?

My tablemate generated a list of ten thoughts. Another young tablemate drew a blank, as tears continued to flow down her cheeks from the piano music. She was more a hearer than a talker or writer, she confessed.

I didn’t hesitate. And not because I was a writer.

I wrote furiously because I had been in the midst of experiencing Mom’s Renaissance, Part Two. Or Part One-Thousand. I had lost count how many of those she had. I turned giddy as she turned more giddy, and I became like Buddha with all sorts of wisdom to offer.

To witness the transformation of my mother from an older person with a disease into a human being. Not her actual transformation, but the one I am experiencing with my own eyes.

Mom fidgeted when she heard a loud noise in the hallway, breaking my trance.

“Mom,” I whispered to wake her up.

“Yes?” she whispered back in a game of telephone.

“I have to leave.”

“Okay, honey.” She took my chin in her hands and kissed me on the lips.

“Oh, you call everyone honey these days.” I shook my head.

“Yes, you’re right,” she confirmed without understanding my context, only hers.

“Ciao, bella,” I said, as last my goodbye, and we threw each other kisses with our hands.

Mom’s last months of 2016 had been hellish. My first months of the year, busy.

But she and I had settled back into our rhythms, though not necessarily as mother-daughter. And not always as caregiver-loved one.

We had simply become me and you.

It was a long way to Tipperary to the sweetest gal I know. And if our time together offered the opportunity to witness her transformation, surely her gift had been to witness mine.

 

 

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The Dog Ate Pot (and Other Excuses)

fullsizerender-65Dear Mom,

As you know, Italians ingest a healthy dose of guilt. When I was a baby, you offered me biscotti for my teeth and guilt for my soul.

Now, as you have aged, I justify my actions based on a sense of loyalty – and guilt.

After your rash of infections and hospital rounds, I found myself rather inattentive to your needs. I wanted to write and tell you why.

  1. My dog ate some pot. No, really, he did. Enzo licked at a patch of grass in a little pocket park in the city. Later, his eyes rolled into the back of his head. He spent the night in the Veterinary ER and rebounded the next day.
  1. The dog’s stomach did not rebound. For two weeks, I cooked more meals for the dog than for Mark and me. I kept him on a tight leash or in his crate. I worked less when your grandson, Davis, was born premature.
  1. I visited while you slept and I cleaned your closets. You might answer, “That doesn’t count, because I didn’t get to tell you, ‘No, no, no,’ or crush your hands in a death grip while we walked around the hallways, or just throw cookies at you.” Yes, we shared a beautiful moment where I could just love you while Sinatra crooned on the CD player.
  1. I went to Washington to march. We, as a country, elected a president who likes to tweet about random things not related to his actual job of governing. “Tweel,” you asked once when you heard it on TV. “Tweel,” you asked again. Finally, I spoke into your good ear, corrected the mispronunciation, and moved you off the topic.
  1. I participated in boot camp. No, it’s wasn’t a military maneuver. Actually, I didn’t go away, just participated in online discussions about my manuscript, the one mostly about you. Did you know there’s a boot camp for everything these days? Boot camp opening scenes, boot camp how to ride a bike on city streets, boot camp baby food production, which I could have applied that knowledge for the dog.
  1. I stood up to speak out against sexual violence, and essentially, women’s rights. “But, we did that already,” you might question. Yes, but we should have been doing it every DAMN day until the violence ended, and its still here.
  1. I walked a few neighborhoods because I promised something stupid like, ‘I’m going to walk, then blog about all of Cincinnati’s 52 neighborhoods (www.gettinmycityon.wordpress.com) before the next mayoral and council elections. The math worked out to one neighborhood per week. However, I started four weeks late. And winter. And the dog.
  1. I visited you on a Saturday, though I usually visit on Sundays, and my timing messed with your biorhythms. You slept then too, and didn’t yell at me. The timing messed with my biorhythms too.
  1. I traveled to Florida to see your granddaughter, my niece. She needed connection to our family whether she liked it or not. Plus, she was adorable and her moon face and her, well, bossiness, reminded me of you.
  1. One day, I quit working on my manuscript to grocery shop. After shopping, I returned home. Later, I discovered your supplies of Gatorade and Lorna Dunes in the back of my car. I was horrified. I had wanted to see you that day. However, you, the thought of you, had slipped my mind.

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

But you already knew that.

Love,

Me

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If My Mother Was My Boss…

img_8609

The holidays had brought forth what felt like the Twelve Days of Mom.

In that approximate time, Mom experienced two ER runs, one in which I drove her, the other in which I didn’t dare. She was diagnosed with three infections, multiple scab wounds, pain and discomfort from shingles, a disease for which most folks are given chicken pox vaccinations, or don’t live long enough to experience the adult onset of chicken pox. And a week of the runs caused another ER run.

And this was AFTER Mom’s trifecta of seizures, soap swallowing and sun exposure earlier in the year. (See soap blog, part 1 and part 2).

By the end of the year, I was tired. I pondered a change.

Back in my corporate days, New Year’s had signaled job change. Or at least, looking for a new one. The rush of the holidays always led to a significant energy drain. Like any good employee, I directly attributed the drain to my job or boss, but never myself.

As 2017 approached, I had found myself in the same mode. Tired. The kind of tiredness that comes from knowing what comes next in my mother’s moment, and also, not knowing.

At month’s end, when I spoke to her house doctor, he flipped through her bulging chart. After five minutes or so, he looked up at me. “She’s one tough lady and you have one tough boss.”

Yes, in what job could I be employed by a boss who forgot all the good years I had put in, for the sake of one awful moment in which I accidentally bumped Mom while trying to hold down her arm so the nurse could get the blood pressure cuff around her triceps long enough for Mom to yell, “Oh, no, oh wait a minute, wait a minute, wait a minute?”

In what job could I work for a boss who voices a long stretch of No’s when she doesn’t like something? Remember what Ralphie said about his dad in A Christmas Story? “In the heat of battle my father wove a tapestry of obscenities that as far as we know is still hanging in space over Lake Michigan.” If Mom were still in northern Ohio, she would have blanketed all five Great Lakes with her words.

Where else could I find work where I will never get a promotion? In fact, I’m not sure I would want a promotion, because that would mean the woman I worked for is no longer in need of me. In essence, downsizing of the most tragic kind.

Where else could I be chastised by the boss for what I was wearing, as if there was a dress code for visitors at the care home? “What the hell are those things on your feet?” “Umm, boots?”

In what job could I endure my boss’s harassment for which there is no name? Its not ageist, nor sexist. The closest approximation I can come is reverse genetic harassment, in that my boss only harasses those to whom she gave birth to and is directly related.

Where else could I work where there is no strategic planning by the boss? When I plan to visit for the Christmas show, my boss takes a snooze. When I hope to bring the boss home, my boss bawls loudly and sometimes growls.

Where else could I sit at a job, thinking about all the other things I could be doing while my boss is fast asleep, but holding me in place by the death grip? If she couldn’t leave, neither could I.

In the end, the calendar turned over. My tiredness waned.

Lucky for Mom – and me – she was not my boss. But if the years with Mom taught me anything, my most important job was to sit in her quiet space and make room to meet her where she was, ER or not, furniture mover and all, and hope to one day receive a raise in hugs.

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Do Caregivers Experience Sympathy Pains?

IMG_7456Couvade syndrome. Sympathy Pains. It’s not just for pregnancy anymore.

My mother recently was hospitalized for a soap-swallowing incident. Ironically, as I observed and helped her to recover normal swallowing functions, I began to experience swallowing challenges of my own.

When she has had what I perceive to be, but she cannot share, hip pain on her right side, suddenly, I throw the right side of my back out, reaching in for a load of laundry.

When she aches. I do. When she smiles. I do.

Our pain is so intrinsically connected, that where her pain starts and ends, I cannot detect.

Couvade syndrome, also called sympathetic pregnancy, is a proposed condition in which a partner experiences some of the same symptoms and behavior of an expectant mother. These most often include minor weight gain, altered hormone levels, morning nausea, and disturbed sleep patterns. In more extreme cases, symptoms can include labor pains, postpartum depression, and nosebleeds. The labor pain symptom is commonly known as sympathy pain.
Couvade syndrome is not recognized as a real syndrome by many medical professionals. Its source is a matter of debate. Some believe it to be a psychosomatic condition, while others believe it may have biological causes relating to hormone changes.

I am convinced the same sympathy pains present in pregnancy, of which there is no medical evidence, are transmutable to those who are caregivers, those who are in a constant state of worry, obsession and love.

As such, I find myself wondering how connected am I to her brain health? What is the state of my own? Will I experience the same sort of memory loss that so devastates me at times? What would I want to tell my children, my husband, who ever is left holding the bag full of tricks to make me tick?

A cousin of mine, Debbie Wick Herd, recently posted a quote related to a similar theme of If I get dementia.  The prompt floated around in my head for days as I considered what would really be important for my loved ones to remember.

I wanted to write how I have coerced my husband to sign an agreement that he would pluck my white chin hairs and for my kids to make certain that I was served bacon at each meal.

But I went with authenticity instead of the truth.

 

If I Get Dementia

I want you to steady a pen
in my hands that ache to be of use,
roll out the paper in front of me
or flip on a computer
if I am still adept
at that
which I think I will be –
but may forget.

I want to still write
to feel the pulse of waiting
endlessly for the muse to strike
heartbeat bursting through my chest.
For her to paint a picture
– with words
which rush to ink the thin wood
– with words as broader strokes
this time, because though the mind
has shut down
the heart has opened to a
wider landscape
than I might have guessed.

I want you to edit my words,
craft them as you would sculpt
a bust of my being.
You will know what they mean.
Readers have always known better
than writers
what their words really
say.

Do not fret for an agent
or whether or not to publish.
The words will find their way
in the world.
They always have.
They are like worms digging through
the refuse of human tragedy
or wiggling to the top
of human triumph.

If I get dementia,
read me stories.
You will find my most treasured tomes
tattered and scattered throughout
my life.
Then read me something fresh.
Not news, but a crisp voice,
with a new throated call
to keep the niggles at bay.

And last, read me my own words
so I may recognize them still
and say goodbye
to some of the world
I am leaving behind.

 

Annette Januzzi Wick

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