Making Christmas Not So Blue – The Activities Director

img_8493 “Hey, come here. Come here,” Mom called out, while Elvis crooned White Christmas.

Remember those days when you dragged yourself to the kid’s Christmas concert? The one that lasted all of an hour, maybe even half? And you hoped and prayed that your kid would do what he was supposed to do in his “starring” role. Well, as a caregiver, guess what?

Those days are back.

And they’re not half-bad.

While Mom shouted to the singer, I sat back, looked around for the activities director, and together, we laughed off Mom’s demand.

While I admire the many caregivers and nurses who care for Mom, the most challenging role in a care home might be that of Activities Director. How do you plan for events with a demographic that loses their concentration easily, likes snacks, but has an adult orientation and wisdom and set of experiences in life?

Recently, I had coffee with a friend who was considering transitioning her mother into a care home. We discussed our individual paths that had led us to be together in that moment with a set of shared experiences about our mothers experiencing cognitive decline.

“But how do you know you’re picking in the right one?” she asked.

I always had my pat response. “It’s only the right one, for right now.”

But that’s not what I told her. Instead, I struck upon different thought, after having spent two days in a row at two separate care home for two Christmas events.

“Meet the activities staff,” I shared with her.

She looked at me with a mixture of surprise and “aha”.

While Mom was still able to engage (express herself and cuss are two other phrases I would also use), I wanted to ensure Mom had the opportunity to interact with guests that came through that day, whether that person was an Elvis impersonator, a chaplain, or women from the local church who say the rosary.

But it wasn’t just the guest appearances on the calendar that were important. Many care homes can program a calendar.

But who is behind the programming? Who is responsible for knowing who you’re mother is, and where she is, in the moment, and what activities she might deem interesting enough to keep her away from the door (alarm on) when the temperature is 18 degrees outside?

I have one other learning from the larger events that include families, as the past two have. These events are designed as an opportunity to witness how all the staff interacts with your loved ones. Will they dance with the woman who always quotes Telly Savalas’ who loves ya, baby? Does the couple that knows Miss K. from church, sing with Miss H. because they know she loves her song? In essence, how well do other families know and treat your loved one?

Finally, when the activities calendar is plentiful, this too, is a chance for you as a loved one to sit back. Because yes, sometimes the events are planned with you, the loved one in mind, to take a break from being the person who oversees care of the loved one and to just relish.

“Hey, Mom. That’s Elvis. You know, Blue Suede Shoes. He’s pretty good, right?”

“Good. Yes. He’s large though,” Mom said.

“Well, Mom, yes, Elvis did get quite large. I guess about 160 or 170 at the height of his singing.”

Mom nodded, still rather fixated on Elvis, pointing to him several times, while he swung his hips and sang back to her.

Like all Christmas shows, I ate too many cookies and cried at one too many White Christmas’s.

The holidays are especially difficult for those of us with loved ones in a care home, the grief of a life left behind often overtaking the joy of the season.

But these events serve to remind me that, yes, when I was in third grade, my mother sat through countless practices and performances of Little Drummer Boy, listened while I pulled on the too tight white tights, or complained about wearing a tunic (with no pants, this was akin to a dress for a tomboy).

Now, it was my turn. To listen to Mom protest about not getting her cookies right away. “Hey, Hey, how ‘bout over here?” Or, because the music was too loud, and she was unable to discern many of the lyrics due to the singer’s baritone voice, Mom scolded me or maybe Elvis, “Oh, just hush.”

While testing my interpretation skills and my patience, holiday events are a test of love. And Activities Directors and staff are there to make certain I pass.

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Making Christmas Not So Blue – The Activities Director

img_8493 “Hey, come here. Come here,” Mom called out, while Elvis crooned White Christmas.

Remember those days when you dragged yourself to the kid’s Christmas concert? The one that lasted all of an hour, maybe even half? And you hoped and prayed that your kid would do what he was supposed to do in his “starring” role. Well, as a caregiver, guess what?

Those days are back.

And they’re not half-bad.

While Mom shouted to the singer, I sat back, looked around for the activities director, and together, we laughed off Mom’s demand.

While I admire the many caregivers and nurses who care for Mom, the most challenging role in a care home might be that of Activities Director. How do you plan for events with a demographic that loses their concentration easily, likes snacks, but has an adult orientation and wisdom and set of experiences in life?

Recently, I had coffee with a friend who was considering transitioning her mother into a care home. We discussed our individual paths that had led us to be together in that moment with a set of shared experiences about our mothers experiencing cognitive decline.

“But how do you know you’re picking in the right one?” she asked.

I always had my pat response. “It’s only the right one, for right now.”

But that’s not what I told her. Instead, I struck upon different thought, after having spent two days in a row at two separate care home for two Christmas events.

“Meet the activities staff,” I shared with her.

She looked at me with a mixture of surprise and “aha”.

While Mom was still able to engage (express herself and cuss are two other phrases I would also use), I wanted to ensure Mom had the opportunity to interact with guests that came through that day, whether that person was an Elvis impersonator, a chaplain, or women from the local church who say the rosary.

But it wasn’t just the guest appearances on the calendar that were important. Many care homes can program a calendar.

img_8484But who is behind the programming? Who is responsible for knowing who you’re mother is, and where she is, in the moment, and what activities she might deem interesting enough to keep her away from the door (alarm on) when the temperature is 18 degrees outside?

I have one other learning from the larger events that include families, as the past two have. These events are designed as an opportunity to witness how all the staff interacts with your loved ones. Will they dance with the woman who always quotes Telly Savalas’ who loves ya, baby? Does the couple that knows Miss K. from church, sing with Miss H. because they know she loves her song? In essence, how well do other families know and treat your loved one?

Finally, when the activities calendar is plentiful, this too, is a chance for you as a loved one to sit back. Because yes, sometimes the events are planned with you, the loved one in mind, to take a break from being the person who oversees care of the loved one and to just relish.

“Hey, Mom. That’s Elvis. You know, Blue Suede Shoes. He’s pretty good, right?”

“Good. Yes. He’s large though,” Mom said.

“Well, Mom, yes, Elvis did get quite large. I guess about 160 or 170 at the height of his singing.”

Mom nodded, still rather fixated on Elvis, pointing to him several times, while he swung his hips and sang back to her.

Like all Christmas shows, I ate too many cookies and cried at one too many White Christmas’s.

The holidays are especially difficult for those of us with loved ones in a care home, the grief of a life left behind often overtaking the joy of the season.

But these events serve to remind me that, yes, when I was in third grade, my mother sat through countless practices and performances of Little Drummer Boy, listened while I pulled on the too tight white tights, or complained about wearing a tunic (with no pants, this was akin to a dress for a tomboy).

Now, it was my turn. To listen to Mom protest about not getting her cookies right away. “Hey, Hey, how ‘bout over here?” Or, because the music was too loud, and she was unable to discern many of the lyrics due to the singer’s baritone voice, Mom scolded me or maybe Elvis, “Oh, just hush.”

While testing my interpretation skills and my patience, holiday events are a test of love. And Activities Directors and staff are there to make certain I pass.

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Post-Election: Finding Sacred Space

img_8347I moped while seated on the kitchen stool, aimlessly tossing the remainder of Pirate’s Booty into my dry mouth. The dog “hrummphed” at my feet. I stayed, rooted to that stool, head hung, crying.

I had known deep losses in my life, a husband, a father and a sister in a way. The ache that now arose, twisting, winding, through my queasy stomach and up my scratchy throat, in that moment, felt the same.

The election was over. My candidate. The candidate for the many “hers” in my life had lost. Texts, messages, emails stampeded through my every thought, kicking up dust, leaving only more smog.

I paused long enough to stop my stress-eating.

What would I say to all the “hers” in my life? My bonus daughters, my nieces, my writing sisters, my Januzzi sisters, the sister with whom I shared a soul. What would I say to the main “her” in my life, Mom?

I wanted to budge, needed to move through my day. Many, many to do’s awaited. Packing for a flight at 6 a.m., dropping off the dog at the sitter, paying the bills that trickled in, brushing up a manuscript that always required retouching.

And Mom. Sigh. Mom.

I needed to restock her supplies – how I delicately referred to her air freshener and Depends. But also, Mom. Seeing Mom.

I dropped one foot from the stool. Then the next. I leashed the dog. Took him outside. Watched him pee. Grabbed my purse. “She”, my candidate, had to move forward, consider and concede. I did too.

I discovered Mom, busily arranging plastic flowers in a wicker basket. To clarify, Mom was arranging not by any attempt to organize the flowers, but to chew on them instead. I knew that maneuver. It is one she undertakes when agitated or completely confused.

I greeted her with a tired hug. “Mom. Hi,” I muttered from behind.

She turned around and gave me a hardened look. I swore she always knew when I was taking leave.

I tried smiling directly into her eyes, like sunlight – appealing to her now tunnel-like vision.

“Hi,” Mom finally drew out. Then she proceeded to march up and down and all around the quieted hallways.

Our next hour was a combination of Laurel and Hardy, Helen Keller and Charlie Chaplin actions, exchanging words and gestures with Mom, her shouting, me cringing. Calling into one ear, leaning into the other.

Finally, Mom lowered her softening body into a rigid kitchen chair.

From the nearby table, I reached for a baby doll with pink, flirty pants, one of many that floated around the care home like Elf on a Shelf at Christmas. I placed the doll in Mom’s arms and she quickly lifted the “baby” into the left crook of her neck.

From her right, I leaned down. “Mom, I’ve got to get home. I’ll see you later.” I gulped. “Later” meant after I finished traveling.

“Ok, honey,” Mom said, forgiving me for the sin of leaving I was about to commit. She pulled me into the other side of her neck.

I could smell that day’s layer of lotion on her skin. For minutes, I was bent over into my mother’s chest and we breathed each other in.

My gaze was pointed down when I noticed a familiar bump, right above her breastbone. I reached up and touched my same bump.

“This is home,” I murmured to Mom, still partly in her embrace.

Yes, that’s what I would say to all the “hers” in my life. Find a space that is home. Find that part that still connects one to another. Therein lies the strength.

“I am home,” I said to Mom once more, before dislodging my arms, carrying with me my mother’s fortitude as a gift to the “hers” in my life.

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Outside

img_8044

Outside

She lives now in the cracks
between summer and snow
as if the tenth month were not even
as if ones and zeros
and zeros and ones
have set out to destroy
the precarious balance
of her days ahead and those gone by.

There is a restlessness
reflected in the rustling leaves
the ones she chastises
for mere appearance on her path
She knows those dastardly leaves
will buttress the barrier
between her and outside.

Outside.

She thrusts her hands
at every door causing false alarm
tricking her friends to think
today must be Spring or
tempting them
with the treat of Summer’s sweet.
Caramel-colored days must be
just beyond
where the sidewalk bends
back into sun.

Certainly she will push her way
through to next year.

 

AJW 10/2016

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Leaving Mom

fullsizerender-50Driving home from a day with Mom a horrid thought struck me. I slapped at the wheel. What kind of daughter forgets?

At noon, I had been standing in the corridor of Mom’s care home, flipping through my phone messages, waiting for Mom’s “release”. A caregiver was completing her duties in helping to get Mom “clean and pretty” before our day out.

Fall had yet to really blow in, despite the leaves fluttering across the sidewalk and earning my mother’s scorn every time we walked outside. Temperatures were going to hit the eighties that day. I wanted to break Mom out of her care home one more time.

Mom reappeared in the hallway. She wasn’t wearing what had lately been her usual smile, one where even the faintest of light was caught pooling in her faded hazel eyes. Instead, she appeared dazed.

“Oh, she’ll be all right,” another caregiver assured me. “Your mom’s been buzzing around all morning.”

And I had to agree. She would be OK. I knew the routine. Whenever Mom had endured a shower, she typically was tired afterwards. I planned a drive through Hamilton County’s Sharon Woods and a brief stint in the sun. What did it matter if she fell asleep in the car for the fifteen-minute drive?

Before leaving, I noted to Angela, one of the older caregivers on staff. “I’m taking her to Sharon Woods. Then we’ll probably get McDonald’s. So, one less mouth to feed for lunch.”

Angela and I had grown close. We cried and hugged whenever one of the residents passed from our purview into that of the Universe. We wept and laughed over the silly things that we both knew we would do when we too stopped at this station in our journey through the waning years.

“Aw, you’re so good,” Angela said, as she walked ahead of Mom and I, trudging down the hall, Mom stopping to check for dust on the chair rail. “I want a daughter like you when I’m old,” Angela called back to me.

“A daughter like you,” I whispered to remind myself our relationship had turned out OK between Mom and me, but hadn’t always been.

I was born in the middle of a few girls in our family, plus a brother in between. My mother had a hard enough time with the sheer number of children, let alone the number of girls she was raising.

I recall trying to do the right thing many, many times. But there weren’t other times that I went in the diabolically opposite direction. That rebellion was innate, a right of passage for every teenage girl I knew or have known.

I demeaned Mom’s choice to stay home, to sometimes cower in the face of an angry father. I wanted Mom to break out. To stop asking Dad for money. To travel on her own. In essence, I wanted to know she was free. Her freedom then I would equate later to mine.

Of course, I never really knew my mother. Had she really chosen freely? Back then I was of no sound mind or stable hormones to make that call.

My mother was a devout Catholic. I write that statement, and yet years later, I question that too. Was she? Did she just do what was expected of everyone at that time? Did I ask her, did I ask why?

Following college, I knew she wouldn’t approve of my marriage to man who had been divorced. Mom would want to make certain I was married in the eyes of the church, but I felt otherwise. I had been separated from the Catholic Church for sometime, and now with good reason.

Mom attempted to explain her position. Priests were more favorable towards annulment these days, she had claimed. But I refused to listen to her, or sit before a panel of judges and let them judge me, or my future husband. My husband, Devin, and I would have our own day of reckoning when he was diagnosed with cancer and subsequently succumbed to the disease.

As the years took me away from Mom, Devin brought me closer back to Mom, to my parents. Because we had moved out of state, we flew my parents to join us mostly in Oregon by then, or Cincinnati, or Seattle. When Devin passed away, I knew my mother would worry for me. She always worried, or loved, as I see it for what it is now. And regardless of what she thought of the technicality of marriage, she loved Devin like a son.

Now, as we traipsed down the hallway, I asked, “We’re OK, right Mom?” She stared in awe at the vase a fresh flowers now gone dry.

Mom was still foggy, despite the sun piercing our view. I led her down the sidewalk and into my car. We weren’t in the car two minutes when her head bobbed. She squeezed her eyes shut, blinded by the sun’s rays cutting through the car window.

So I drove. I drove with Angela’s words bouncing around like Mom’s head each time I went over a bump.

Mom would briefly wake, say, “Oh my God,” then fall back asleep.

Is that what good daughters do?

A good daughter would have just left Mom on one of the last day’s of October’s summer to sit and sleep in her room, with a little Frank softly crooning her to sleep.

A good daughter would not have taken her Italian mother through the McDonald’s drive-thru and convinced her that the French Fries were on par with tiramisu or meatballs.

A good daughter would not have driven around Sharon Woods twice, ignoring the one flaming orange pear tree because she was looking for a bench nearest the calm waters of the creek at the woods AND handicap accessible parking space. Then, force a mother out of her trance, entice her with French Fries and park her mother and her onto that bench, breathe a sigh a relief that only lasts as long as the thought, “We still have to do all of this in reverse in a little while?”

Time tumbled through like the driest of leaves. Mom woke several times when she heard the screeching voices of little children parading past us. She looked upon the children with a mixture of delight and, I noted, a little sadness. I did too.

I missed us, she as mother, me as daughter. I missed that time. I missed that time when she was grandmother to my itty bitty son. I missed that she could not witness the transformation of my beautiful bonus daughters. And I missed that she could no longer know Mark, who has truly been a blessing in my life, and more so than me, allows Mom to be who she is in her disease.

What I do, I do out of love, out of respect and honor. I do what I do out of a certain sense when Mom has left me, and Angela and I have had our good cry over her departure, I will have no regrets over this life we have woven together in Mom’s thinning years to keep her safe and warm and alive in her soul.

Mom slipped back into sleep, I nudged her awake. We slogged back to the car, me ahead of her, acting as a walker of sorts and cringing as she gripped my hands for her dear life. And hers was a dear life.

I performed my duties in reverse, belted her in the car, and drove back to Arden Courts. Mom and I processed through one door then the next. She steered me straight for the closest chair in one of the sunny sitting rooms.

I helped ease her down into the chair. “Mom, I’ll be right back. I’ll tell Angela you’re here.”

I left Mom seated, eyes closing as I spoke, and turned down her hallway to find Angela.

“Hey, Angela, I left Mom up in the sitting room,” I called to the caregiver unloading dishes.

“Did you have a good time?”

“We sure did, but she was a little sleepy. But gosh, the day was gorgeous.”

“I can’t wait to get outside,” Angela said, noting the clock.

“You’re gonna love it,” I said. “Have a great weekend.”

As I walked back up the hallway, I remembered another family was moving in that day. I hurried to move my car, parked in the circle closest to the front door, so others in line could also shorten the time their loved ones had to get from door to car.

I pushed a few levers to return the passenger seat to the proper position for the next rider and got into the driver’s seat. My mind was on texting my husband, asking him to buy apples at the market then I drove away.

I made a turn through the neighborhood I use often as a shortcut. The neighborhood consists of mostly 1950’s style bungalows, but the homes’ exteriors are kept in pristine condition. The abodes remind me of my Grandpa Januzzi’s home and I often thought, if my parents had moved to Cincinnati when my dad first “threatened”, this neighborhood would have been ideal.

I drove halfway home on the interstate, lost in thought about which apple cobbler recipe I would use, recalling how the last one with cornbread topping hadn’t been a success.

And that’s when I smacked my hands on the steering wheel.

“I forgot to say goodbye to Mom,” I revealed the empty sparkling water can and the guy driving an electric blue Hyundai in the next lane over.

“I never forget to say goodbye,” I said to myself, noting how hard it was to leave Mom because I always said goodbye two or three times before my actual departure. Because Mom holds on to me, or takes my cold hand and holds it to her hot cheek, or reaches for my warm hand and holds it in her cold fingers.

Four and a half years of leaving Mom, and I had never forgotten, until that day.

Suddenly, I started laughing, incredulous that I had walked right past the sunny room where Mom was sitting or probably had eased into slumber by then.

The Hyundai driver looked at me funny.

“Who forgets to say goodbye to their mom?” I wondered and shrugged my shoulders at the driver.

“A daughter like me,” I said, repeating Angela’s words.

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The Land the Mind Forgot

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It was quiet. The women had been lulled to sleep by the usual bustling sounds of caregivers cleaning up after breakfast and nurses dispensing meds. The TV had been turned to one of those channels that shows the classics, like I Love Lucy, Mary Tyler and Moore, and of course, The Andy Griffith Show.  I entered the room, said a few good mornings, and one by one, the women in my mother’s corridor began to wake to start their day once more.

 

The Land the Mind Forgot

Evelyn extends her hands
again and again and again
wanting to clasp anything,
reach towards
anything to buoy her
while she paddles in the air
around the island where she lives.

Just then, a flicker from a time past –
of Mayberry and fishing poles
and Aunt B running for office
against a male-backed Howard
clearly not up for the job.

One might contemplate
the parallels of the day
but these women do not.
They are no longer of the mind
to consider such trite matters.
Theirs is a land
the rest of us, on another horizon,
can neither see
nor taste, nor feel.

Instead, a tune drifts
through the haze
bounces on the sunbeams.
That tune.
The Fishin’ Hole.

Someone, a live someone,
whistles
and suddenly there is joy
as if the women were not watching
the TV and its colored flickers
that strikes lightening upon their faces.
It is not the TV,
but the jolt of nearby whistling
that pierces
the armored proteins
of their minds.

A yellow sock, tapping to a toot.
Fingers, sometimes used as forks,
drum on a lap.
A mouth, that barely opens to speak,
whose lips form a round “o”.

And a sweet someone’s mother
who reaches for another’s hand,
holds it
to cheeks smelling like
the slick formula of Oil of Olay
no longer sold on shelves.

 

10/11/2016

AJW

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Do Caregivers Experience Sympathy Pains?

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

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

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

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

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

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

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

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

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

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

But I went with authenticity instead of the truth.

 

If I Get Dementia

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

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

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

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

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

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

 

Annette Januzzi Wick

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