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

 

 

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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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Taking Stock at (Nearly) 90

I crinkle my nose as I glance over at Mom, nestled in her green, crocheted afghan. She is snoring loud enough to wake the heavens. And right now, on Mom’s birthday eve, I am trying to keep the heavens at bay.

She caught some cold bug the other day, and has been sleep-eating (yes, its possible, because it’s Mom), and sleep-walking and a few other activities that most can only accomplish when awake.

And I am stuck, here in her room, with an iPhone battery dying (yes, its an iPhone 6) and little to do but take on a task Mom would relish – cleaning out her closets and drawers.

IMG-5768I begin my duties at a small, crème cabinet, one that resided in Mom’s foyer. We had a foyer in the home on Lincoln Street. It was quite the step up from the screened breezeway of our youth on Ridgeland Drive. Mom taught us the word, foyer, and what its purpose was. Mostly, the cabinet held Mom’s dress purses. A matching mirror was perched above, positioned in an area where the girls could bound down the steps, fix an errant curl (and did we have lots of them), and head out, not the foyer, but the mudroom, which was also new concept in the home on Lincoln St.

The cabinet had been separated from its mirror, still languishing in storage following my father’s death. But the mirror kept good company with the sofa table and someday will be reunited, I suspect when Mom and Dad are reunited.

From the bottom shelf, I lift up and caress Mom’s two black, dress purses. And imagine Mom toting these, filled with only lipstick and Kleenex, on her nights out. Her evenings were never fancy, but Mom dressed as if they were.

I wrestle open a few plastic Kroger bags to find 12 pairs of new socks. Twelve. I hadn’t realized Mom was flush in socks or I wouldn’t have bought her the many pairs that joined her Christmas stocking stuffer of new socks. What else do you get one who turns 90 and whose socks disappear inside the Dr. Suess-like dryers of her care home more than my own?

I add several of the new pairs to the stash in Mom’s regular sock drawer and fold all her camisoles, which she now wears instead of bras. I recall the first time one of her caregivers asked if I wanted Mom to wear a bra, because we would have to also keep track of her breast form. I agreed to discarding the bra concept. However, I kept the insert as a reminder of the battle she won over her breasts, letting one go, and liberating the other.

The chest drawers contain little, other than manicure supplies I have bought over the years, a few errant colors that only work in spring and summer, a photo album from my parents trip to Hawaii, which included a stop-over in Napa, to join my sister, Laura and I, while we toured wine country. My parents were so alive then, so full of life’s promise to live out their days on their own terms. Come to think of it, so was my sister. But, as life has taught each of us, we don’t always get to choose.

I store holiday items in the bottom drawer: plastic pumpkins, a purple, felt Easter basket. Anything Mom can’t eat or break. I remove the red and green tinsel from the countertops and shelves and take down Christmas.

IMG-5443.JPGCarefully, I rewrap her Christmas carolers and place them in a box in her closet, along with thinning numbers of Christmas decorations. The carolers are my favorite holiday decoration. The figures so represent a time and place only touched in my heart by the sight of these felt dolls. My mother treasured the dolls for the hope they exuded and the songs only she could hear sung.

I move on to her nightstand, with the drawer pull now gone. Only a screw remains to grasp, to pull out the drawer and select a Nat King Cole CD to croon to Mom while she sleeps. The drawer once held a coloring pad of Scooby Doo characters, for when any grandkids came, or for when I was bored, or wanted to pressure Mom into coloring. She never liked the idea, so I gave up. A red crayon rolls out from under her ceramic bible, which I have hidden because I can’t bear to take it away from Mom. I always want her to be nearer to thee.

I rehang a few cards a sister once sent. In the past, birthday or holiday cards dotted her closet doors. Letters from friends who still resided in northern Ohio. Cards from her sisters-in-laws. But they all know Mom’s disposition and that their words would fall on, not-quite-so-deaf ears. That they will save their prayers for Mom for the pews, where the incantations are more likely to be heard.

Mom’s snores are now shaking the wreath hung on her door. One resident, Rita wheels herself into Mom’s room, curious as to the noise and my appearance. Rita doesn’t speak much, but she cackles when I call her “Chiquita Rita.” She nods her head over and over for sometime before boredom sets in and she wheels herself out.

IMG-5781I trudge over to the closet. I am delighted by my own brilliance as I rearrange Mom’s clothes from blacks to beiges, though I know they won’t stay color-coded for long. Yes, I am this bored, and this committed to observing each breath Mom is inhaling. I am taking no chances, and like any other day, will drag her kicking and screaming into her ninetieth birth day.

She only has eighteen hours until that time arrives. Eighteen hours in which anything can happen. I am really not anticipating her departure, because she is on her seventh or eighth life, as a cat who might possess more than nine.

My phone has died as I snap the last photos of her room. Pictures of her grandchildren, all but the oldest, because at the time, I didn’t have a 5 x 7 of Cheryl. The round faces have morphed into thinner faces, hair color changes, broader chests and a change of fashion. Her youngest granddaughter, Sophia, is 13. In the photo, she is in kindergarten.

I never had the heart to change out the photos. They chosen by Mom, displayed on her “altar” above the kitchen desk. Two photos of my father also watch over Mom, but Mom always gravitates to her wedding day photo. Who wouldn’t?

IMG-5770Only a few other photos populate the room, because, well. Because. Because my time is better spent in the moment with Mom. Or outside. Always, outside. And Mom rarely spends time in her room, other than to sleep. Though right now, I am wishing I would have spruced up the décor a bit more, if only to entertain myself.

Inventorying the contents of Mom’s room, I have taken stock of Mom’s life. For Mom, whatever items remain now no longer have meaning attached to them (other than the wedding photo). And for that, I am grateful. The lack of sentiment will ease the task later, whenever Mom departs for brighter shores. For that too, I am grateful.

The bedrooms of the many residents at Arden Courts is testament to that same detachment. What they hold is not what I consider necessary or would carryout out of a home in a fire. No passports, or insurance papers. No laptop or cell phone. No photos, even.

For them, pictures of their loved ones have been burnished into their minds, just as they would want to remember them. Young, and vibrant, and maybe with a glass of wine in their hands.

My mother would certainly not want to remember me, standing over her, tears streaming down my face, as I held her black clutch bag with its gold chain and clasp and imagined her dancing somewhere. Somewhere.

She would want to remember me, as she sees me now, when she wakes for a brief time, holds a hand to my cheek, and says, “Sweetie”.

I don’t know how old I am in Mom’s world, and I have a birthday approaching, so I am moving further away from whatever age she views in me.

I wouldn’t pick to be ten years old. And probably not eighteen. I am aiming for twenty-five. At that age, I wasn’t married yet. Not widowed or a mother either. And certainly not the blubbering fool I was now.  At that age, I was only her daughter. And we were on the path of becoming. Just becoming.

Dementia can be a beautiful disease. While it sloughs away at Mom’s remembering of me, the disease has crystallized my remembering of her.

 

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What Makes for a Good Day?

Mom CatchlightI hovered behind Mom’s chair, sticky with fingerprints, while she sat at a table for four in the kitchen at Arden Courts. 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 did for many years with tatted pillowcases and Dad’s shirts but the napkin wouldn’t lie flat.

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

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

But he 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 any of my mother’s Sinatra tunes cycling through my brain.

Leftover lunch scents of turkey and gravy wafted around the room. 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, closing in on Mom’s face. My nose took in a whiff of lavender and almond oil emanating from her skin. Thursday was Mom’s shower day. She remained seated, staring at another resident, or inaccessible, frosty outdoors.

“Hi,” I uttered again and adjusted spread my feet apart. My foot slid.

“Awww.”

Mom had dropped leftover stuffing after pinching a portion with her hands and I had smeared it with my boots.

“Hi.” Mom’s tone was flat.

I reached out to encircle Mom in a hug. She pushed my arm away. My purse slipped off my shoulder and into the stuffing.

“What do you want with that? Oh go on. Don’t do that. You should when you….” Mom’s loud rants 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, silently accusing another resident who had just dropped a plastic puzzle on the floor. The pieces shattered the silence that was more jarring during meals. Mom was always quick to reproach another resident of looking, speaking, eating, or living.

I had rushed over to visit Mom in between meetings and a car appointment, diligently plotting out 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 have priorities beyond just surviving. He recounted a story of a woman laying on her deathbed, a woman who would die 48 hours later, who asked if she could take her grandchildren to Disney World. Of course, it was too late. The medical community had missed that ask by looking at what the doctor could fix and not seeing what else could support her well-being.

Dr. Gawande defined well-being as: the reasons one wishes to be alive. Its been five years I have overseen Mom’s care. Its been longer since she has been hidden behind the haze of dementia. Over the course of blog posts, laughter and tears, I wondered what were the reasons Mom wished to be alive – other than to torture me.

On occasion, I entered into Arden Courts and was forewarned 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, I walked into that same setting, only to have my hopes dashed and hands too, at the hands of my mother, who, like a Ferrari, went from stillness to scowling in ninety seconds.

And so, my mother was mortal. We all were, but she was a lot closer to dying than others her age because of her dementia. But she was not dying in the traditional terminal sense. Therefore, 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 cuddled 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 don’t know what a good day looks like for Mom. She might grin at the smallest indiscretion of someone else, while also snarl in my ear if she’s left out of a conversation or could not follow the line of thinking due to her hearing or inability to comprehend.

I swung her chair from beneath the table. She yelled some more. She squeezed my hand as hard as she could, and grit her teeth. Something akin to a grrrr….. was emitted from her vocal cords.

Like a mechanic jacking up a car, I raised her up through carefully placed shoulder anchors and footholds. Slowly, she straightened. One foot followed another until she was erect and on her way.

Her legs picked up speed. We traversed .3 miles that afternoon.

What does a good day look like? For eight hours with one caregiver, it looks maddening. For another set of eight hours with another caregiver, it 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 year when I should have been asking the questions. I wasn’t the kid chatting up a storm on the other end of the phone line. I was the kid who challenged my mother’s beliefs or reported in for duty, and hung up.

About eight years ago, I sat at the walnut kitchen table with Mom and Dad. They filled in an outline of their medical background and posted it to the refrigerator. The document was called a File of Life. Tt should have been named the File of Death. It so succinctly catalogued how they were failing, and not living.

And there was no line on which to answer, “What does a good day look like,” for someone whose mind would eventually turn blank.

Society’s language around death, dying, and dementia dramatically altered in those intervening years. But Mom and I could not take full advantage of the advances.

My time with Mom ended an hour and a half later. I often berated myself for leaving when more time was available to me, 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 us to interact for ninety minutes.

Mom used me as her walker and I stumbled backwards. She warned me about backing into a fake streetlamp. “Here. Here,” she called out. ” Translation: look out.

Finally, I nudged back, caught as we were in tug of war. I was her gravitational pull as she moved towards a bench while shooting more invectives my way.

I plopped her 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 shaggy pillows. Her feet, in black Velcro shoes, swung off the ground.

I kneeled in front of her and slowed her feet to standstill. I placed my hands on her knees and looked into her face, as if asking the Pope for forgiveness.

“Mom, I’ll see you later.”

“What’s that sweetie?” So coherent. And did she really mean sweetie? And was the 90 minutes of haranguing worth one moment of this adoration?

Well, Dr. Gawande. It was.

There will never be a good day for Mom and me. But there will be stuffing stuck to my winter boots, napkins Mom will fold, fingers – hers and mine – cramping from loss of blood, and a few juicy swear words from the mouth of a woman who once sang in a high contralto like Kate Smith. And if the sun ray’s graze her face at just the right angle, out of the corner of her eye, she’ll glimpse a reason for being alive.

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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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In Theory, Practice, Life

In Theory

FullSizeRender (76)“My eighty-nine-year-old mother was shoving furniture around yesterday, using her superhuman strength.”

I was presenting to a group of docents at the Taft Museum, in training for Memories in the Museum, a joint program through the Greater Cincinnati Alzheimer’s Association and Cincinnati’s art institutions of Cincinnati Art Museum, Taft Museum and the Contemporary Arts Center. The series of four programs, each offered at the three museums, encouraged individuals with dementia and their caregivers to partake in art appreciation through specially-curated tours, discussion, refreshments and art.

“When Mom spotted me, she grumbled. ‘ C’mon, c’mon’. I knew to help her despite the rant.”

She continued on until the effort wore her down and – her chair hit a wall. An hour later, after slowing down our time together to an almost crawl of the hands around the large clock, Mom reached out for me and said, “I love you.”

The audience of docents quietly hummed.

The convener of the training, Lisa Morrisette, had recently attended a symposium on arts and Alzheimer’s in Denver called Art Access. Earlier, Lisa had reviewed concepts from the symposium, one being person-centered care or taking a person-centered approach. Anything person-centered had become a buzzword in arts and Alzheimer’s community settings.

In working with the local Alzheimer’s Association, I was in attendance at the Taft that day to discuss ideas on pairing painting and poetry for the Memories the Museum program. I continued with my talk.

“After hearing my mother’s soft, sweet voice say ‘I love you’, I would take Lisa’s words one step further and say, we need to take a human-centered approach.”

I facilitated my program and eaxmples, using a short poem about the Mona Lisa and a comparable writing subject of the Cobbler’s Apprentice.

Cobbler's apprenticeHis ears, large, elephant-like
for such a young boy
what else has he heard?

Eyebrows, umbrellas shading eyes
from deals after dark
what else has he seen?

Those berry-plump lips
which young miss
will he kiss next? – AJW

Panelists had also been seated at the head of the room. The group included two individuals in the Memories in the Museum program. Each had attended the series for a while. One female participant excitedly shared about the program. “It’s the highlight of my week.” Her caregiver husband admitted though, he was not “a museum person”. For C., a former art director now experiencing dementia, his words reverberated through the room. “Coming to the museum was like coming home.”

For several days, his comment literally stayed with me, scribbled on the back sheet of my agenda buried in my flimsy, black tote.

It was all the evidence I needed. When I think of ‘person’, I think of the physical container that is the body, the shape. But ‘human-centered’ allowed me to see failings, frailness, and fears, as well as the life experiences that shaped that person over time.

In Practice

Two days later, my work took me to Memories in the Making, a program distinct from the one above and operated by the local Alzheimer’s Association for over 15 years.

Participants arrive with their caregivers. The caregivers attend a support group and participants work with the Time Slips offering images designed to stimulate recollections and imagination without the pressure of total recall. Afterwards, their apt facilitator, Joan Hock, leads them in an art project, some quite complex. For some individuals, Joan had witnessed their decline in art before it was apparent in life.

Instead of the Time Slips program, my colleague, Pauletta Hansel, and I, facilitated our session with poetry and writing on the theme of cars. The caregivers rejoined later to hear our readback lines from participant’s writings and spoken thoughts.

Betsy shared, “I ended up flat in the mud….I’m still here, stuck in the mud”. She and her husband’s eyes widened as together they recognized Betsy’s words describing an event that happened long ago. The irony of those words was an appropriate account for someone experiencing dementia. The individuals were in essence, stuck in many ways. The art and words helped them out of the rut. (Read our group poem below).

In Life

I hustled from that class, raced home to care for the dog, and sped along the highway to visit with Mom. She and I had spent six of the past seven days together, as I had been concerned with her recovery from a seizure. I was also leaving for Oregon for five days and had racked up hours to make up for the difference in my absence.

Becky, the activities director, informed me how Mom had been in a glowing mood, which was better than glowering. I was not to find the same. Mom grabbed me by the hand to assist in raising herself from the chair. Soon, Mom shuffled around on sidewalks outside. In a wheelchair, another resident, John, chose to follow us. John had Parkinson’s but displayed less outward signs of dementia.

“You’re the POA for your mother, right? My brother is mine. And I want to go to Charleston.” John had spoken long and longingly about Charleston in the same way I spoke of Oregon.“But my brother and sister say I can’t. I need more help. I don’t have much money left but I have some. Do you know the name of lawyer? The doctors say I only have six months to live.”

His words came out rapid fire, as if John were afraid he might lose his life if they were not dislodged from his brain at that moment.

John had been residing at Arden Courts for less than a year. We had chatted about Charleston after I shared that one of our daughter’s lived there. We had talked shop about photography. He once wheeled away and whizzed around the hallways to track me down and proudly show me a Shutterfly book comprised of his most recent photos before the disease took over.

John had been somewhat mobile upon entering Arden Courts, but soon enough, his body began whirring through the stages of his Parkinson’s. He had experienced a few falls because he wanted to get up and out. John was now limited to a wheelchair, but strong enough to wheel himself around and up over the humps of the threshold to the outdoors.

John trailed us and tried to explain his situation with Mom and I. Mom, who could not hear well, let loose a torrent of nonsense, frustrated because of her impaired hearing and comprehension. She was also prone to possessiveness, but I had no way to prove it.

Finally, Mom tired out. She zeroed in on a chair to my left. I guided her to a seat. In an instant, John rolled alongside. He wanted to hold Mom’s hand. That was just a very John thing to do, to try to calm Mom down and speak to her.

He peppered me with more questions while explaining his last wish was to travel to Charleston. Due to his arresting speech patterns and Mom’s interruptions, I was fuzzy on the details. Did he wish to stay in the South throughout the duration of his life, or did he simply want one more visit?

With tired eyes, I stared into his lint grey-blue eyes, eyes that once ran deep as the ocean when I first met him and he asked me out for lunch. I didn’t know his family, though I had cursed them under my breath for no reason. He possessed a computer and wanted his speech recognition software to function. He insisted that his brother was working on it, but I didn’t know what to believe.

John panted, desperate to tell his story before his story stayed buried in the sea of memory. He wanted to be with his son, who had been at the Citadel. However, if my memory served me correct, his son had been transferred to Oklahoma or Texas. But that was my memory…

I encouraged John to talk to the staff about the lawyer. If he had the means, and if his family was holding him back, I wanted him to have the chance.

His story stuck to me like a wet leaf leftover from a rainy day. I researched “make a wish for old people”, though Jim wasn’t old. And there was a program that existed, the Dream Foundation, “giving life to final dreams.”

IMG_3575In 24 hours time, I would be standing in my “last wish” place. The place I want someone to drive me to, and seriously just leave me there. It would be the last and only item on my bucket list. If I accomplished nothing else in this life, it would be that.

However, my mother’s last wish was unknown. I often thought hard about that. She was mostly if not always about her children, her food, and a little peace and quiet. Last wishes always seemed tinged with regret. But Mom wasn’t a regretful person. Her last wish would most likely be a final dinner prepared with her five children surrounding her, no fighting, no arguing, everyone arriving on time.

IMG_3695I can’t make John’s last wish come true, but I’ll keep asking. Maybe, I’ll conjure up a time for Mom when she could expect her children to act like “normal human beings”.

Human beings who want a life that is relevant and remembered, the comfort of family and food, and a place of rest that perpetually reflects who they were before a disease ravaged their person.

 


From our Memories in the Making session:

Our Cars: Memories in the Making

I.
Metallic green on green Chevy Nova.
A turquoise ‘56 Ford.
Six of us in the station wagon—
a not so fancy car.
The ladies got to ride in my rumble seat.
That’s what it’s for.
I rumbled all night.
I had a Chevrolet. It broke.
My favorite car was any that worked.
I married a mechanic, you see.
I never rode in a car when I was younger.
I paid for my own first car
and never wrecked it.
It was a pretty small car,
the smallest Ford I could get.
I had to have a convertible.
I think that’s why we got married—
my husband wanted a Ford Mustang
and he couldn’t afford it without both of us.
I went to Theis Motors in Reading
to buy my Chevrolet.
Remember the Twin Drive-in in Bond Hill?
It was a requirement to sneak in.
Who knew how much it cost.
We had more in that rumble seat
than you can imagine.
There was always room in one of those cars.

II.
Are we there yet?
Cumberland Falls. Virginia. Wichita, Kansas.
Driving through the storm in the basin of California.
Where I grew up was flat,
the Red River where it flows
into the Mississippi—
the rivers and the swirling highways
is the most of mountains I got.
We went to my mother’s family in Virginia once—
after that, we said, come to us.
The car was the only place
my dad didn’t know how to hit me.
I was one of those kids.
In the car I was safe.

III.
Driving through the mountains,
the windows open,
listening to the wind.
Sitting around a nice fire
watching the night sky—the stars
and only the sound of the animals.
Once we went camping
and he said, when we get married
you’ve got to make me do this.
And we never did it again.
My wife drives more than me.
She drives me crazy.
My husband taught me to drive.
He’d always park me on the hill,
and I’d panic when it would roll back.
I never was good on the cars—
how many I drove into!
Once I ended up flat in the mud—
my son and all his friends went quiet.
That was my introduction to Cincinnati.
I’m still here—stuck in the mud.

IV.
So many road trips I’d still like to take.
I loved driving in the car.
I still do.
I just like going, driving—
it’s a form of meditation.
Now we are moving on
to children and grandchildren
and lots of memories.

From participants in Memories in the Making with Annette Januzzi Wick, Pauletta Hansel, and Joan Hock of The Alzheimer’s Association of Greater Cincinnati, September 14, 2017. (Composed by Pauletta Hansel)

 

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The Sacrament of Cookies

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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