Category Archives: arden courts

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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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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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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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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Still Saving Seats in Old Age

FullSizeRender-28Big, burly Jack moved closer to the adjacent chair.  Jack was saving that seat in the activities’ room for Emma. But Emma was already gone.

With youthful-bobbed white hair, Emma had been a resident at Mom’s care home. Always upbeat, Emma never stopped smiling, could still stroll the path at the former Blue Ash airport, and waxed poetically about times when she was little.

Emma’s husband had passed away, prior to her entering Arden Courts. Rumor was, Emma also had a boyfriend named “Jack” before her family had admitted her to the care home. When Emma arrived at Arden, she was soon found seated in the westside parlor with another resident, Big Jack. The two could be seen finding humor in themselves (see Vignettes from a Care Home), gazing out the window, or interacting with visitors and staff.

The parlor faced the secure door. Oftentimes, upon my entry, I gravitated towards Emma and Jack first, before seeing my Mom, and offered a hug, a laugh, a where have you been sort of joke to turn the tables on their lives and mine. Their presence, an unusual lightness in their togetherness as Jack was always seated on the chair and Emma on the love seat, lifted and warmed me before I would learn what condition or mood I might find Mom in for the day.

It was as if the two had already shared lifetime together.

Both residents possessed moderate cognitive impairment. For caregivers and staff, who care for more difficult cases and love each person for who they are, residents like Emma and Jack were subtle reminders of the lives residents used to lead, the persons they used to be before they slipped out of those skins. Emma and Jack were also tokens of how sneaky and impactful love can be.

Their joy in each other’s company was evident, palpable, such that I often sat with Mom in their company to relish in that bliss. Theirs was the purest form of love.

Emma had found joy in someone who she didn’t know where he had worked. Jack had discovered delight without knowing how many children Emma had birthed. Neither had known where the other one lived or was born or what was important to them, though I suspect some topics might have risen to the surface and then soon were let go. The only thing each of them remembered was love.

One morning, I arrived to learn Emma’s son had moved her to another care home. That event occurred often, when the money ran out, when the siblings fought, when the individual progressed into a new phase of the disease.

There was never a guarantee that the first place or the best place would be the last place.

Now, I see Jack sitting behind his walker in his usual chair near the exit door, as if ready to depart. The caregivers informed me he is still saving a seat for Emma, yet his disposition is as corny as ever. “Dad” jokes come to mind. Jack still returns hugs when I offer my arms. When I say, “I’m off to go see my mom,” Jack responds, “Tell her I said hello, would ya?”

As for Emma, love had left her time and again. But she didn’t act like a person who would ever lose the capacity to love. Emma will offer and find love at her next place, of that I am certain.

Perhaps Emma’s time with the residents was to give just that, the ability to love again.

And the empty seat next to Jack? The ratio of women to men in memory care centers is 3:1. Sadly, plenty of women will arrive to take Emma’s place. But I hope Jack stands (or sits) his ground, and doesn’t relinquish that chair, as a reminder of how fleeting and precarious unions can be, and yet still be profound.

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A Respite from the Mind

FullSizeRender-21“Where’s your mother?” Dad would mutter as he wandered inside from the shoe store business or traipsed upstairs from his shaving room in the basement.

“Out there,” one kid with a mouth full of cookies would respond.

“Where’s Mom?” another kid might inevitably ask, when he or she wanted to stay out past curfew, take Mom’s Chevy Caprice or be driven to a sleepover.

Whatever kid was still in the house would answer. “Out there.”

“Out there” meant in the sun. My most vivid memories of Mom are as she was seated outside in the wash of warmth.

Summer days in Amherst, Mom often shooed us all out of the house and my siblings and I would ride our bikes to Maude Neiding pool. If one kid wanted to stay home, Mom demanded to know why. She wasn’t really worried if we were sick or had fought with a friend who also might appear at the pool.

No, Mom wanted us out.

Mom herself had little interest in sunning at the pool. I had once thought her attitude had to do with her modesty, but now I imagine her approach had everything to do with kicking us out of Ridgeland Drive and shipping us off so she could have time in the sun to herself. There, Mom could pull out a frayed vinyl folding chair and dangle her feet in our plastic kiddie pool which sloped in the backyard just enough to create a “deep end” for grass floaters and her toes.

As we grew up and our family moved to Lincoln Street, Mom could still be found outside when the weather warmed and even when it didn’t. When we moved, we had brought a few old folding chairs with vinyl straps shredded to near destruction. Mom took one of those chairs and moved it from the front porches to the back patio like a sundial.

When the sun pushed up the morning in the front of the house, Mom could be found seated in the front yard, presumably telling my father he had planted the geraniums too close together, or that there was a shred of mulch or white rock out of place.

When the sun gradually faded to afternoon, Mom followed the path of its rays and moved the chair to the back of the house, where the truckers driving by on Route 2 would honk and wave. At that point, she wasn’t wearing any sort of bathing suit, just her everyday clothes, but truckers beeped nonetheless.

About five years ago, when Mom came under my care, she and Dad lived at The Lodge apartments in Loveland on the third floor. The balcony overlooked a wooded area which padded the view from a busy Montgomery Road, but the sun always poked through, even if in splinters.

The first afternoon I viewed that apartment, I had thought to myself, “How perfect.” The sun would slice right through for Mom onto the small deck and into an even smaller living space.

So a second set of plastic chairs was transported 210 miles and placed on the deck of their abode at The Lodge.

Later, as I arrived to visit Mom and Dad at The Lodge, and attempted to coax Mom onto that deck, I discovered she had become afraid of heights. That, after her dementia had cozied up alongside her life. And that the plastic chairs hadn’t been used since the transition from Lincoln Street.

Those were the saddest days with my mother. Mom’s new living space had kept her prisoner from relishing in the out of doors in the manner in which she always had. I committed extra visiting hours just to escort Mom to the ground floor outdoor spaces where she could soak up her sun but not wander off.

While Mom had lost her ability to scale new heights, she never wavered in her desire to follow the sun. So when I took to writing and exploring my circuitous journey with Mom and her dementia, Mom’s fervor for warmth and summer came to mind.

When naming my blog, I first started using, Lost to the Summer Wind. Being that I am a purported expert in writing about loss, according to my husband, the name was apropos.

But time elapsed. Mom changed in her disease and so did my outlook. I wanted to write from the vantage point of loving and learning. A viewpoint that really represented our relationship. A perspective that offered a brief interlude from her disease.

Countless lines from Mom’s Sinatra songs had been woven into our partnership, but none stuck in my head more so than these:

I’ll find you in the morning sun / And when the night is new / I’ll be looking at the moon / But I’ll be seeing you.

When the month of March finally arrived and Mom had persevered through another winter, one where she didn’t have to drive or shovel or go outside at all, I knew it would only be a matter of time before I discovered Mom relentlessly pushing on the arm of the secure doors of her care home, being called to go outside.

For a time, the doors remained locked. The cold temperatures still seeped in, snow occasionally fluttered around, and the rains of April and May had turned all the flowers soggy.

But now, when I enter my mother’s care home, I knowingly ask, “Where’s Mom?”

I am met with a familiar nod of the head towards the out of doors, towards the sun. Or, if Mom hasn’t made her way to her personal solar system, then I coax her from inside.

During my last visit, she used a few choice words on me, for no apparent reason (which is typical) yet finally, I led her outside. When she and I approached a bench in the sun, she just sat down and uttered, “Oh there it is.”

Sun has always been a respite for Mom. And now, more so, as a hiatus from her disease. In the sun,  Mom can pretend she has shooed those aggravating kids away and dangle her feet in a pool of summer scents. And relish in this reprieve from her mind.

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