When Did I Become a Caregiver?

 

Mom often reaches for my hands and arms, when she is cold, when she needs warmth.

That day, like many others, I was entangled in her embrace.

A question someone posed earlier floated still in my head, during the noisy, silent time of Mother’s Day tea.

When did you know you were a caregiver?

After five years with Mom, I should know the answer to that question.

But does the origin go back even further? For me, it did because of my first husband. But had that just been who I always was, a part of who I am, or was it a part of who I was becoming?

Mom only released my arms and hands when an older woman came around and waved a plate of brownies beneath Mom’s nose.

“No, thank you. We don’t need the peanuts,” I spoke up for two, shaking some blood back into my upper extremities after Mom’s grasp.

The woman, a member of the Delta Psi sorority that arrived every year to freshen the tables with linens and teapots, pleaded with her eyes for me to take one, at least one.

“OK, I’ll take a piece and just lop off the peanuts before giving it to Mom. She has swallowing issues,” I said, to sum it up nicely and not go into any lengthy discussions on digestion.

We, er, Mom, was on the fifth course of dessert, after four courses of finger sandwiches made from ham and cheese, cream cheese and zucchini bread, pimento cheese, and egg salad. We had eaten Madelines, strawberry cakes, butter cream cupcakes, and wafer that was basically carmelized brown sugar over graham crackers, something someone might bring to a campfire, and tasted equally as devilish.

I hated being the gatekeeper to Mom’s stomach, but her caregivers, the REAL ones, would have to deal with the consequences later, and since I would be out of town for a week, I’d rather not have them dissing me under their breath while I was away.

But those caregivers? They were the real partners in the scheme of caregiving, so why even ask myself the question, When did I become a caregiver? Mom was in their company twenty-two-and-a-half hours of the day, and me, all of ninety minutes.

In an earlier post, I noted my parents had named me Health Care POA. To be honest, the designation was by default as much as anything else. I was not privy to the conversations my parents might have had, or knowing them, not had, because what Italian didn’t just sweep everything under the rug or bury it beneath the tomato vines?

What then, in my makeup, brought me to the edge of this vocation time and time again?

Was it the flexibility I had in my work? Was it the fact that I must have done such a stellar job with Devin, read irony, that I became the obvious choice?

When did I even know or think of myself as caregiver for Devin?

During Devin’s bone marrow transplant in Seattle, as part of his admission, one person was to be the designated caregiver, like the designated hitter, schedule to come in off the bench, anytime, when bats were hot or cold, to pinch hit or to make a difference in the game, when the team needed a bunt or a homerun. That was me.

But before that, most people who knew me wouldn’t say I was the warmest and fuzziest person to be around. I could be rather direct, I didn’t make chocolate chip cookies for every new neighbor, only pizzelles for my favorite ones, and considering myself twenty years ago, I didn’t know how to ask for what I wanted.

And that was my first lesson in caregiving. My first lesson in what was required to be a caregiver was to become a demanding, bitchy woman who accompanied Devin to all his treatments, and went in search of a nurse the second the IV pump began beeping, or that he needed water. The list was as endless as the beeping.

But the truth is, anyone of us at anytime could be called to be a caregiver. Look at me. You don’t have to do it well. Or with a lot of enthusiasm on the days when you can’t muster happy, happy, because of menopause, or your mother twists your arms so much you think she might break it.

But you would do it. You would show up, because you can’t imagine not showing up. Because your mom took care of your kid when you took care of your husband, and isn’t that the least, maybe the very best, you can do? He might even be a better kid because he was raised by grandparents for a while, with a little more soda and chocolate than you might have liked, but hey, he was your first, you would have caught on.

So, when did I know I was a caregiver? It wasn’t because my father put my name on a few documents. He could have done that with any of my siblings. I doubt it was because I had always told Dad I would take care of Mom. I doubt it was because of my time with Devin, because by most outer appearances my actions might have appeared heroic, but those instances were difficult, and there were days when I had to admit to the harsh reality of letting go of someone I loved.

Maybe it was because of my time with Devin.

Perhaps that’s what defines a caregiver. That I will say, “no,” to endless rounds of testing, or raising Mom in and out of gurneys on ER runs, or playing keep away from countless needle pricks in her arm. That I will know how to let go.

The ultimate requirement of being a caregiver is knowing when your charge no longer needs your care. That’s when you become a caregiver.

I whispered in Mom’s ear. “I’ve got to go, Mom,” I had an Engagement/Derby party to attend and was already late.

“You have to go?” Mom repeated after me, like a little pappagallo. She was still mesmerized by the music and what might be crumbs left on her plate from the brownies, wondering if she ate them all, or if there were more treats, or what exactly she was doing there in that room with ladies wearing wide-brimmed hats, and who was the person who had just called her Mom.

A pui tarde,” we exchanged in Italian, back and forth several times.

“Love you, Mom.” I held my arms around her shoulders for a long while.

She grabbed a hold. “Love you too, honey.”

And then I slipped away.

 

 

 

 

 

 

 

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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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Ode to the Human Body

I let out a small yelp. “Mom!”

With the door wide-open, Mom had lifted her shirt over her head, removed the soiled piece of clothing from her arms and was promptly folding it. I hurried to shut the door, consciousness of my mother’s nakedness.

Fifteen minutes earlier, Mom had an accident. Well, not really. What I called accidents were really just incidences of Mom’s body doing what it was supposed to be doing, or not doing what it was supposed to be doing and Mom’s mind not knowing the difference.

A caregiver had gone to great lengths to cleanse Mom from the waist down. But as Mom and I strolled outside, I noted Mom’s pima cotton top needed changing too, so I had piloted her back inside where Mom promptly dropped down on the bed with a sigh of relief. She had been on a forced march out in the sunshine, only to be goaded back to her room by me. FullSizeRender-82

Now, I stood and observed Mom’s body.

I didn’t often see much of it anymore, as caregivers were tasked with many of those duties. Occasionally, when we went out, or I brought Mom to my house, I risked having to change Mom while she yelled at me.

Sometimes, I removed Mom’s socks so her feet could breathe in the fresh air. Or, I’d roll up her pants so that her calves, still bulbous after years of stooping to dust and pray, were exposed to the noonday sun.

While I disdained the same scrutiny of my own body, I found Mom’s fascinating. Her body revealed her history of lives birthed and lost, of legs that traveled once to Italy, but mostly up and down stairs. Her feet had worn only the most stylish of pumps, thanks to Januzzi’s Shoes, but were relegated to hefty athletic wear.

As I opened the neck of the shirt to lower over her head, I studied the flat terrain of the right side of her chest, sporting a lightening bolt scar where once was a breast. After cancer came knocking, Mom had politely, though resolutely, declined.

Below me, Mom’s legs, with those short, taut thighs, had been sculpted by years of kneelers and steps that also kept her heart in shape.

Her belly was bloated, not from lunch of turkey wraps, but by children she birthed and the tears she might still cry for the one she gave back. Down the middle of her womb, she carried another line – a stretch mark of stitches from when she was torn open to remove body parts no longer needed. I spent an eternal night with Mom in the hospital, knowing she would yank at tubes, the doctors waiting until swelling in her belly decreased enough to scan and operate. How afraid was she? How afraid was I?

Her hand carried bruises. The discolorations were common now. Not because of abuse, but Mom processed up and down hallways, attempting to break in to locked doors. The discolorations were a result of her attempts, or shall I write, insistence.

She thread her arms through the shirt and looked up at me with eyes she once claimed on her driver’s license as brown, brown as the dirt of her ancestor’s home. Her eyes turned hazel over the ages, like a clear creek turning with algae. Now, the two o’clock rays sliced through her window, illuminating eyes of green, like the lushness of a meadow where she as a child might have run and played.

My mother was the poster-girl for modesty. I owned more photos of her hiding from a camera than smiling in the lens of one.

I had no sooner straightened the shirt to her waist and Mom stood up and toddled out of the room. I watched her go, as she used her muscle memory and headed back outside pushing on the arm of the door, that time not locked.

IMG_9778She found the first open chair outside, plopped down and fell into slumber.

I had been absent for a few days, during which, the nurse had phoned to inform me Mom was diagnosed with two strains of UTI. Following that phone call, I was anxious to discover what condition I would find Mom in – sleepy, grumpy, sneezy, bashful.

After the march in and out, Mom’s struggle to change the shirt, and her return to the sun, I was happy to report her body was in the state it was supposed to be in.

The human condition.

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A Long Way to Tipperary

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

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

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

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

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

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

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

She burst into giggles. “Yeah.”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“Mom,” I whispered to wake her up.

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

“I have to leave.”

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

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

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

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

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

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

We had simply become me and you.

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

 

 

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The Dog Ate Some Pot (and Other Excuses for Not Visiting)

fullsizerender-65Hey Mom,

You know, Italians ingest a healthy dose of guilt. When we were babies, you offered us biscotti for our teeth and guilt for our souls.

Along with four sibs, I was raised with a guilty conscience, and even as you have aged, I justify my actions based on a sense of loyalty – and guilt.

After your rash of infections, I found myself rather inattentive to your needs. So, I thought I would write to tell you why.

  1. My dog ate some pot. No, really, he did. He licked a patch he found in a little pocket park in the city, spent the night in the Veterinary ER, and rebounded the next day.
  1. His stomach did not. For two weeks, I cooked more meals for the dog than for Mark and me. I kept him on a tight leash or in his crate. I did less work when Davis was a newborn.
  1. I was there but you were sleeping, so I cleaned your closets. You answer, “But that doesn’t count, because I didn’t get to tell you, ‘No, no, no,’ or crush your hands in a death grip while we walked around the hallways, or just throw cookies at you.” Yes, it was a beautiful moment where I could just love you while Sinatra crooned on the CD player.
  1. I had to go to Washington to march. See, we elected this president who likes to tweet about random things not related to his actual job of governing. “Tweel?” you asked once when you heard it on TV. “Tweel?” you asked again. Finally, I spoke into your good ear and moved you off the topic.
  1. I participated in boot camp. No, it’s not a military thing at all. And actually, I didn’t go away, just attended boot camp online – for my manuscript. There’s a boot camp for everything these days. Boot camp baby food making, boot camp opening scenes, boot camp how to ride a bike on city streets.
  1. I had to stand up and speak out against sexual violence, basically, stand up for women’s rights. “But, we did that already,” you question. And I say, “Yeah, but we should have been doing it every DAMN day until the violence ended, and its still here.”
  1. I had to walk a few neighborhoods because I wrote something stupid like, ‘I’m going to walk, then blog about all of Cincinnati’s 52 neighborhoods before the next mayoral and council elections. One week, one neighborhood.’ Only I started four weeks late, and its winter, and the dog.
  1. Because I visited you on a Saturday, though I usually come on Sunday. My timing must be messing with your biorhythms – since you don’t get a chance to yell at me and get it all out – but consider the timing is messing with my biorhythms too.
  1. I traveled to Florida to see your granddaughter, my niece. She needs connection to our family, whether she likes it or not. Plus, she’s awfully adorable and her moon face and her, well, let’s just say, bossiness, reminds me of you.
  1. Because one day, I stopped writing to grocery shop. I was so engaged in the scene left behind, that after shopping, I returned home and only later, I discovered your supplies in the back of my car. I was horrified. I had planned to see you that day, and you, the thought of you, had slipped my mind.

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

But, you already knew that.

Love,

Me

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Super-Agers and Cheese

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Aunt Carmelene Januzzi. Photo credit: Paula Januzzi.

I read my cousin Paula’s Facebook post about her mother, Aunt Carmelene, and  wistfully studied the photo.

Aunt Carm was my father’s sister-in-law. She had just turned 87. With cheeks rosy and full, she appeared to be thriving. Aunt Carm was still cooking full meals at home and engaging with the grandkids.

Good for her, I thought, and allowed my heart to sink.

Every day, I confronted the facts about super-agers like Aunt Carm, and reconciled that information with a mother who was aging superbly in her body, but not her mind.

Mom, too, just had a birthday. She turned 89. As a reflection on her life, I reread my blog post (Buon Compleanno Vincenzella) from her birthday two years ago. What had I learned in the intervening years, and what I had gotten wrong?

Plenty of both.

“She is becoming closer to the perfect state of being.”

I wrote those words with the knowledge and hope Mom’s time was of some quantifiable length filled with quality. I could feel a letting go of expectations, in particular mine. However, I also did not anticipate the up’s and down’s she had been through as of late. She was four for four in the infection battle, and still counting.

In various news reports, at doctor’s offices, in clinical or cultural settings, superagers are  defined as one who has been identified in studies as having exceptionally sharp memories in their 80s and 90s, and are lauded and applauded.

However, those of us with loved ones in care homes or at home but no longer super aging examine the worlds of those we love and say, “Yes, and…”

My aunt and mother grew up in the same hometown. Both were Italian. Both consumed the “Mediterranean Diet”. Both were active in their church, community, and chosen vocations. My mother walked plenty, rode her bike, and climbed enough stairs to outlive multiple Fitbits had they been invented.

The two women basically drank from the same well and breathed the same Lake Effect air. They would have grocery shopped in similar stores. Aunt Carm lost her husband about ten years ago. Mom lost Dad five years ago. Both had a fair number of children, four and five. Both baked cookies, the good ones. Both had plenty of grandchildren to keep them engaged. In general, their lives could be compared to one another.

However, we don’t have the tools to measure the impact of life’s interruptions on aging, of which my mother experienced an early loss of a birth father and her first born, and the subsequent tragic experiences of her own children. Aunt Carm also experienced this with her husband and children, but in each woman’s biological or emotional response, perhaps this was where their paths diverged.

A study from Massachussetts General found: In 17 “super-agers”, several parts of the brain’s memory machinery – including the anterior insula and orbitofrontal cortex and the hippocampus – appeared thicker and healthier than normal for people of their age.

Aging causes shrinkage in those regions of the brain. In super-agers, memory test scores correlated to brain size, i.e., the better score corresponded to the thicker brain. Perhaps thick-headed should be redefined, because none of those test subjects appeared to have an unintelligent life.

The doctors then asked, Can we create super-agers, or are we born with it?  From Forbes onlineThe researchers can’t yet tell if their positive attitudes are a result of having healthier than usual brains or if the attentive and positive attitudes are a cause of the healthier brains.

My cousin would answer her mother created a fulfilling life that has led to her longevity. I would answer, my mother was gifted with flawless skin, a petite frame, and quick wit and a service heart, but was she also born with a genetic formation that led her down this path? Can one’s emotional lifestyle be another factor? Two sides, nearly the same coin?

Can we live with the paradox that for some, our bodies outlive our minds? And for others, our minds outlive our bodies? Can we hold somewhere in the middle the fact that sometimes our minds and bodies outlive the medical news? Can I?

I am happy for Aunt Carm who is becoming or is already a super-ager. Scientists are identifying those individuals and studying their makeup, offering more possibilities to cure Alzheimer’s and dementia.

What most frightens me – and this is the truth for many caring for individuals with dementia or Alzheimer’s – is becoming a super-ager without a super mind to go along with it.

If I am a super-ager, it’s because I walked the Oregon Coast every day. Or because I wrote blogs about city strolls into my 90’s. Or because I remained curious about the people who surrounded me and the events that shaped me.

If I am not a super-ager, it’s OK. My kids and husband know I’m not usually that super excited about anything related to aging – other than wine and cheese.

Note: The author has yet to determine the proper spelling of super-ager. Perhaps hope some super-ager can help figure that out.

 

 

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If My Mother Was My Boss…

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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