Category Archives: care partner

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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Filed under alzheimer's, arden courts, care partner, dementia, mom, non-profit, Uncategorized

Swipe Left and Right

IMG_0446I swiped left and right between the photos.

No, this was not on Tinder. This was in real life. Mine and hers.

Mood swings were at the top of my most despised moments with Mom. I didn’t hate my mother in that moment. I hated myself because I’ve yet to learn how to adjust to her fluctuations.

But in between those moments, was everything that was life and death.

When Mom was cranky or ornery, my first reaction was always UTI. Bladder infections were common occurrences in individuals experiencing dementia. The infections created moderate to severe changes in disposition. Thus, when Mom’s mood swerved and curved like an Indy race car driver, my first thought was UTI.

True confession. My very first thought is Mom is dehydrated. Then, UTI. And because a UTI left undiagnosed for too long could lead to complications, panic sets in. I track down the nurse, or a caregiver informs me the staff has already told the nurse. Then, we wait on a person whose incontinent. It’s really not an exciting time. One of the caregivers will take Mom to the toilet and turn on the running water, to encourage output, so to speak.

My mother would be horrified if she knew I wrote about and shared those challenges. But, I reasoned, she and Dad could have named any of their children POA. They chose the writer.

Back over Easter, I was leading Mom to the Easter egg hunt when we encountered the Easter Bunny. The bunny stopped long enough to hug Mom, but didn’t speak. Did the Easter bunny ever speak? Mom should have at least recalled that, I presumed. But alas, some memories did not cross the span of time and neurons.

The Easter Bunny’s muteness was NOT acceptable to Mom. Several times she yelled out, “C’mon. C’mon.”

Anyone could read those words on her lips, and in between the lines of her furrowed brow.

Eventually, the Easter Bunny disengaged its fingers from Mom’s, while I slid my fingers into the crusher’s hands. We traipsed down the hallway towards Easter Brunch.

The brunch passed without incident, mainly because I maintained strict oversight in allowing Mom access to the orange juice and extra chocolates. Confined to a corner near the window because of our tardiness and Mom’s desire for light, Mom spent much of her time watching the youngsters anxiously waiting for the hunt to start. One little guy told us all about being in second grade while boasting of towering over my five-foot frame. Mom muddled through with the occasional angry outburst because she couldn’t follow all the conversations.

When a seat opened up in the main room, I guided Mom to an open table where she had a better view of the children processing in and out, and out and in. Then, I grabbed the bunny ears and ladybug antennae and fiddled with each, placing one on Mom’s head (this is where I apologize to Mom), and one on my own head (this is where I apologize to my children).

And Mom lips parted, first in a slight grin, then like the Red Sea, ready to swallow up all the jellybeans and life before her. In the span of a half hour, she was content again.

I lived a thousand lives in between a good moment and a bad. Her voice, when at optimal yelling capacity, reminded me of days she didn’t separate far from her rubber spatula when discipline was needed.

Copy of DSCN1093 - softHer voice, when saying hello to new faces sprinkled with sunshine, rang through to my heart, resounding of ten days spent in Italy, when I took my parents twelve years ago. I had never seen my mother more radiant than in those moments in the square in Siena, mangiare al fresco, called out by a carabaniere, or holding court tableside with a carafe of vino della casa in Fiesole, above Firenze, with her Italian-American daughters at her beck and call.

In celebrating Eastertime with Mom, I experienced the rising and dying and rising again of Mom to beat another infection or crush a daughter’s disposition.

Lately, at Mom’s care home, several residents had died due to falls or the natural cycle. Despite having spent countless hours in this setting, I never knew how often one could contemplate the shaky nature of our existence.

We are all one fall away from the precipice, or one flight away from opening the skies. We are one moment away from sheer joy or complete madness.

I swiped left and right, and prayed we wouldn’t have to do this again until Santa Claus arrived AND that Mom would here to scold him too.

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A Long Way to Tipperary

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

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

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

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

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

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

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

She burst into giggles. “Yeah.”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“Mom,” I whispered to wake her up.

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

“I have to leave.”

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

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

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

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

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

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

We had simply become me and you.

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

 

 

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If My Mother Was My Boss…

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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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