Category Archives: something meaningful

What I Wore When Mom Died – Part II

(cont’d from Part I)

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

And in one exchange of looks, we both knew.

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

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

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

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

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

I was family. It’s what I wanted.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

A smile, inside and out.

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

I was joy-filled.

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

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

 

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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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Baby Doll

“Hello, baby,” Mom said, with a broad smile and wide eyes that had surprisingly become part of her character as of late.
The words, the phrasing, the inflection all reminded me of Mom’s sweet tone she used while cooing to the grandchildren when they were little.  How she would scoop them up into her arms, toned from years of ravioli rolling, and nestle them into the crook between her collarbone and cheek.
When our son Davis was born, Mom, or “Nanna,” rocked him to sleep many afternoons, as he was somewhat of a fussy baby.  He eventually grew to sleep even in cars, when not behind the wheel. Observing Mom as I entered into her living space, I recalled how she used to call Davis, her little snuggler (Sorry, Davis).
Standing over her now, I realized, she wasn’t talking to me. She was speaking to the baby doll resting in her arms. A plastic baby doll. No, her behavior was not bizarre. In fact, it was quite normal.
“Put something meaningful in the person’s hands,” wrote the authors of You Say Goodbye, We Say Hello. TheMontesorri Method for Positive Dementia Care, Tom and Karen Brenner.
About a year ago, a companion caregiver who visited Mom regularly, and treated Mom like her own, hit upon the idea to gift Mom the doll.  The doll was wearing more clothes then than she had on now. But the doll’s frilly pink dress and blue eyes enticed Mom, who, every once in while even slept with the doll.
Occasionally, I brought in People magazines for us to read, because of their large print. But also, the cover sometimes featured a celebrity who had given birth, along with the new baby. “Oh, there, that one. Isn’t he something,” Mom said about Prince George.  
Recently, there had been a cover picturing Christine Aguilera, with her daughter Summer Rain. While Mom was not pleased with the name, she adored the baby wearing a tight pink hat and sporting startling blue eyes.
Sometimes, with my iPad and Mom seated at my side, I search Google Images, using the term baby. Mom is so taken by the plethora of images, she is overwhelmed and speechless.  She giggles and can’t seem to settle on which one was her favorite.
But, when I heard Mom say, “Hello, baby,” for a split second, I thought she was directing her helloat me.  Instead, she was swinging the baby doll back and forth, as she rocked in the “maternity rocker,” and peering into the doll’s eyes, saying, “Hello, baby.”
Often, when the baby doll is in her arms, other residents stop and ask, “Boy or girl?”  “Can I hold her?”  “What’s his or her name?”  They tower over Mom with jealousy and wistfulness.
Mom doesn’t typically respond, but I do. “It’s a girl.”  Or, “About three months.” Or “Would you like to hold her?”
“How lucky,” Mary Lou responds.  “Isn’t that something,” Big Jim says.
The doll didn’t come with tag stating her name. I’m not certain a name would have stuck. Her name is Baby Doll, and that works for Mom. Occasionally, Baby Doll has gone missing.  Meaning, one of the other residents has taken off with the doll.  Sometimes, the staff has to put out an APB for Mom’s doll.
Put something meaningful in a person’s hands, I harken back to. Sometimes its coffee, or a snack, which is how I learned to not complain about Mom’s eating, unless it’s the whole hunk of brie she once tried to consume at Christmas. Eating is a meaningful act.
In their stories, the authors included other meaningful items, such as baseballs, violins, trains, pipes and wrenches (for a former plumber). When Mom visits my house, I put a wooden spoon in her hand. She still loves to stir a good pot of sauce. And despite the lack of babies in our family (no rush, kids), she still loves good hugs. If no one else is around, the baby doll is a fair substitute as her little snuggler.
A mother never forgets how to love. And she never forgets how to love a baby, even when the baby is a forty-nine year old daughter resting on her shoulder, asking the big questions about life.
She will wrap her free hand around my cheek. “Well, there. Its there,” she’ll respond, and hold up her baby doll.
You Say Goodbye, We Say Hello. The Montesorri Method for Positive Dementia Care, Tom and Karen Brenner.  Read more here….

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