Category Archives: dementia

What Makes for a Good Day?

Mom CatchlightI hovered behind Mom’s chair, sticky with fingerprints, while she sat at her 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 had in mind, when he asked, “What does a good day look like?”

Dr. Gwande practiced endocrine and general surgery and wrote a New York Times best seller, On Being Mortal, Medicine and What Matters in the End. I never read his book. Anyone who has lost a loved one, especially out of chronological order, can tell you what matters.

But he had returned as guest on a favorite podcast, and the question, What does a good day look like, a question that transformed his practice, now played like an earworm, one worse than any Sinatra tune circling 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 that was rapidly diminishing. This summer, Mom began to point her nose down, most often when she walked. I first thought her back was giving her fits, or at 4’ foot 7”, Mom had shrunk again. In dementia, loss of peripheral vision was common. It was her perspective that had been altered, not by choice, but by disease.

“Hi,” I said, closing in on Mom’s face, my nose taking in a whiff of lavender and almond oil emanating off her skin. Thursday was her shower day. She remained seated, staring at another resident, or outdoors, which she couldn’t access due to frosty conditions.

“Hi,” I uttered again and adjusted my stance. My foot slid as I smushed leftover stuffing Mom must have dropped on the floor while pinching a portion with her hands.

“Hi.” Mom’s tone was flat.

I reached out to encircle Mom in a hug. She pushed my arm away and 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….”

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 continued with her outburst. “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 shattering the silence that was even more jarring during meals. Mom was always quick to reproach another resident of looking, speaking, eating, or living.

I had rushed over to see Mom, in between a rash of meetings and car appointments, diligently plotting out my route to include a stop to see mia bella. 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 that I have overseen Mom’s care. Longer that she had been hidden behind the haze of dementia. And 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 in her own way about playing kickball inside, while another resident screamed out, “Kickball is 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 some others her age, mainly 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 through the feat of modern travel, medications or video transports?

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 that will not explode when slipped gingerly into the water and pushed ever so slightly under the roil and then lifted out with slotted spoon and cuddled with homemade sauce?

Those would be events happening at a conscious level for which Mom would have no grasp of what joy or meaning it might bring for her.

I don’t know what a good day looked 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 inserted myself back into Mom’s life and swung her chair from beneath the table. She yelled some more. She did this thing, where she grabbed my hand and squeezed 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.

She wanted to walk. 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 like one thing. For another set of eight hours with another caregiver, it looks like something else. 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?

My mother and I didn’t know each other well. I wasn’t the kid chatting up a storm on the other end of the phone line. I was the kid who challenged her beliefs or reported in for duty, and hung up.

At least eight years ago, I sat at the oval kitchen table with Mom and Dad who filled in an outline of sort, of their medical background, and posted it to the refrigerator. It was called a File of Life. But it should have been named the File of Death. It so succinctly catalogued how one was 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.

Our language around death and dying and dementia dramatically altered in those intervening years. Only 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 considered heroic for those that didn’t actually work in the dementia field. It took pots of patience for me to cook up things to do and ways to interact for ninety minutes.

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

Finally, I had the gumption to push back, caught as we were in tug of war. I was her gravitational pull and 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, remained swinging.

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 the 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 she will keep trying to fold, fingers – hers and mine – cramping from loss of blood, 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 touch 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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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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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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Filed under alzheimer's, arden courts, care partner, dementia, summer, Uncategorized

Writing as Daughters, Healing as Writers

Pauletta Hansel and I sat as facilitators, at the front of the conference room in the Cincinnati’s offices of the Alzheimer’s Association, facing participants for a workshop titled, Writing Our Lives as Caregivers. Both of us were grown daughters of mothers experiencing dementia.

But Pauletta and I had first known each other from a different life. One grounded in writing. I was new to writing then. And new to an organization called Women Writing for (a) Change. I was also new to grief. And single motherhood. And the arts, as my previous training had originated from a technical background and multiple cancer floors.

But I needed something to sink my teeth (or pen into) and found how much I not only relished the writing process, but speaking and sharing with others about writing brought about healing for myself.

It was by some surprise then, that I found myself nominated for the board at WWfaC, with Pauletta at the helm. I was even more surprised that she nominated me as an “energetic volunteer of the arts”, profiled in the newspaper. I felt rewarded, not necessarily for something I did, but for something I felt.

Years later, she and I were grounded by our mothers. But we were still writers. In fact, Pauletta as the Poet Laureate of Cincinnati. And I, a blogger on the topic of dementia, with a few smaller publishing feats under my belt.

In recent years, our individual work had evolved. The work was from us, but not always about us. However, as we began plotting out our circle, Pauletta had suggested we use our own writing as prompts to move participants towards their inside words. I was surprised. I had never used any of my work as a model for others to emulate. But I knew, as a writer, we must know when to show the way.

What was the best way to demonstrate writing about loved ones with dementia, instead of telling them? Yes, showing them.

Thus two of our poems acted as the impetus for many, many words in that workshop. Ironically, my best writing that summer day originated from one of Pauletta’s poems.

In the best of Mom’s moments now, she smiles. A broad, I know you because I have loved you, smile. It is that smile I always carry with me, for those “other” days, of which there are plenty.

I don’t recall her smile so much when I was younger. In the grainy photographs of Mom, images have melted back into the ink. A regular utterance on any family vacation was, “Ette, do you have the camera?” Or “Ette, did you get a picture of that?”

While she demanded my father carry the camera, change the film, and snap the picture, she never wanted to be the subject of his frame. She would duck away from the lens or out of sight.

If she became the subject, her smile often appeared forced, painted on like lipstick. Those were my memories of her in black and white, and Polaroids.

IMG_7217Ironic now, a shift in media has brought more vivid colors, more clarity as I capture her. In tandem, she smiles more. She has let go of a certain consciousness about her appearance – her hair, her nails, her style of dress. Mom’s smile now comes from a place deep within. When she first sees me, she lights up, even if in the next moment, she begins to yell again.

I experience my mother as joyful (not happy, that emotion seems fleeting). Her pudginess gives way to the youthfulness of a four- or five-year-old. This is how and when I remember to love.

As we closed the writing circle that day, more tears had been put to paper and more joy had replaced the tears. The workshop also brought a demand for more workshops like it.

In the interim, each participant was asked to contribute two lines to a group poem. Gifted with an ability to see patterns in others’ words, Pauletta crafted this touching group poem.

For As Long As We Can: Writing our Lives as Caregivers

There is much more hurting than healing
in our lives right now.
An incredible sadness.
Robbed of all this time,
many years, with my mother.
I let go of the colorful gal I once knew;
now her words cut through me like a machete,
leave a hemorrhage like no other.
All this before I even sit down.

I want so desperately to believe
God has a miracle for my dad,
for my beautiful Gina, in beautiful Bermuda—
how I would love to take her again,
away from the tiny world she knows
—and the bitterness of that impossibility.

I hold to every word, to every syllable,
to every streak of black
remaining in Mom’s soft white hair.
I know I am still her baby girl.
I cling to my old memories.
I don’t want it to change, but it does.

But then, a conversation—mother and daughter.
Mom hunched her shoulders
and walked in a silly way, making me laugh.
She doesn’t need that jacket on,
but she’ll wear it anyway,
singing “76 Trombones” and I join in.
It takes her a moment to connect
my place in her room
with my place in her life.
I know she is in there.
She looked in my eyes; I let her love me.
Mom was back,
but not for long.

The touch of your hand—unnerving,
unbounded by time.
At Mirror Lake in Eden Park
the air had cleared,
the colors of sunset filled the western sky.
Tiny blue gills swirled alone in lazy Van Gogh circles.
Heads together, giggling like conspirators
and wishing for more.
I am still comforted by your touch.

Moments—come and gone—
that would not have been
had we not been present.
Engulfing moments unborn, unknown by us.
A salve to put on the wounds part—
the baggage of the day
and my beat-up body,
the parts that broke,
under the pressure of loneliness.
I breathe deep until the next time;
I sink into the car
and think about doing it again tomorrow.

The contrast—the leaving,
the spent memories so different,
so contrary, so final.
Or maybe not final,
maybe this too will change.
I hold her strength, yet I cannot find her.
The joy we had, the hope
and promise of things to come.
I want to believe.
I cling to these prayerful words:
Relax, you are safe.
I will be here for you—not forever,
but for as long as I can.

I have high hopes the Alzheimer’s Association, and other organizations, will continue to sponsor similar programs that use writing as a tool to mend. As a society, we don’t need more pills, just a few more pens and poets who can lead the way through the heart, even if the mind has already let go.

I can’t speak for Pauletta, but in that workshop, we sent the participants off on their day not as spouses, or siblings, or adult children. Not even as caregivers. We sent them off as writers, in hopes they could mine with their words what the mind could not grasp.

Send an email to Annette Januzzi Wick for more information on writing workshops for caregivers, individuals experiencing dementia and other related topics. Information on her upcoming workshop held in September – From Moments to Memories can be found at Women Writing for a Change.

Visit Pauletta Hansel for more information on Cincinnati’s 2016 Poet Laureate.

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Filed under alzheimer's, dementia, healing, Uncategorized, writing