The Search for an Ending

The priority summer project for major marital brownie points was our Basement Clean Up and Clear Out: years of family photos spread across four corners of the ping pong table; disassembled trophy parts in boxes on the floor; postcards, letters, and a sundry of sentimentals scattered across a half dozen Costco folding tables including 20 Cedar Point key chains that needed to be chronicled and curated.

On my first reconnaissance downstairs to account for inventory and to consider removal options, I confess the lure of procrastination reeled me in. As I scoured the lower level for bulldozing strategies, at the bottom of the steps stood Kimball, our one-time-brand-new-electronic organ, who stared through me in stoic sternness and mumbled:

“Don’t even think about it.”

We had not spoken much in recent years, albeit, the geriatric organ and I have lived together and known each other for decades.

The Backstory:

A week before Deb and my wedding, my mom called to say she won 2nd place in a Purina Cat Chow contest. The prize was a $900 “Entertainer Super Star II” Kimball organ. She presented this musical jewel to us as a wedding present, so as newlyweds, Deb and I furnished our first home, the 10 x 50 foot 1964 New Moon trailer, with Mom’s Purina Cat Chow 2nd Place trophy. 

An innovative wonder, Kimball has two keyboards and multi-color-coded controls with “magic chord” and “magic memory” buttons that allows such wizardry as to play a full chord by tapping a single key. The rhythm section includes Slow Rock and Soul Rock with the traditional Rock-n-Roll plus Rock, Latin, and Boogie beats in the “Swing Bass” section. This all may sound passé in the present day, but at the time to have such avant-garde, state-of-the-art synthesized sound inside our home created a brave new world of musical possibilities. Our esteemed high-tech organ resounded as the most expensive item we owned and cost almost half as much as our mobile dwelling.

These electronic marvels became the rage in the 1970s and 80s with new novelties such as rhythm accompaniments and the Magic Memory keys that delivered a cool concerto mix. To have this orchestral refinement in our first abode with such sonic sophistication conjured visions of the sheer rhapsody for all who would enter our newly christened made-for-sound 500 square foot home on wheels. They would open the front door of our trailer and behold! Kimball would shine with colorful keys and sleek veneer in pomp and glory, commanding attention and admiration from family, friends, and local tourists.

And what happened? 

Nothing. 

Forty plus years later, I concede that after the initial inspiration for concerts and songfests around the organ receded, or more accurately never transpired, its minimal usage did not transcend into anything grand. Cora worked out a deal with Kimball to house her 4th and 5th grade flute sheet music, and her middle school music books still repose on its music stand. On rare whims, someone might hit the tango or salsa buttons and toggle up the tempo, but through the decades, the bench has received more attention for extra seating and cup-holding than the organ has for hoedowns and hootenannies.

These “Entertainers” remind me of the Emperor’s New Clothes. The multicolored keys and innovative, synthesized technology upon first hearing sound smooth and unique and fashionable, but in time, even those of us unversed in the symphonic arts must admit these Kimballs, Wurlitzers and their ilk do not ring too acoustically pleasing even to the untrained ear. The oboe sounds like a slight cough; the flute sounds like the oboe with a cold; the banjo and mandolin sound like the oboe with a mechanized twang and everything sounds in similar nasal discomfort.

Musical instruments in good care tend to increase in value with age, but these organs end up on the street for trash pickup. The Goodwill and the Salvation Army will not take them. On Ebay, the first Kimball “Entertainer” auction I found was a Buy It Now for $1.00 one-dollar or “Best Offer” with free pick-up.

Although our organ-with-attitude has almost no monetary value and has stood unheard for the last few decades, and although Deb (who plays the ivories) has nudged me for years to send this unmelodious fixture to the dump, every basement cleanup results in the same conundrum: I cannot bring myself to part ways with this 1980s wooden washed up electronic basement dweller. 

“And you’re not going through with it this time either, Mr. Clean,” Kimball bellowed as I stood akimbo at the bottom of the stairs attempting to steady myself for another basement stand-off.

“Well, Deb and I were thinking maybe it’s time—”

“I’m not going anywhere.”

“I mean it has been years—”

 “Stop talking.”

Confused with how to proceed, I retreated up the steps and lost another showdown.

Regrouping over the next few summer days, I started to wonder: why did this musical chonker continue to survive every basement purge for the last twenty-plus years?

Marie Kondo, the modern guru of organizing clutter, may have an answer. She shares her KonMari Method (Cora bought Mom and me the book) with her five categories of tidying up and the fifth and final being sentimental value items. If one starts first with this last classification of sentimentality, then the cleanup job will never get done. These items are often too difficult to part with because of the meaning and memories attached to them.

Most of us accumulate mementos that have no value except the significance they have to us. These items are portals to the past. They connect us to events and places, and many connect us to people who matter in our lives. They serve as sparkler flashbacks that light up the long-ago with a twinkle and give our idiosyncratic items value—not to the culture at large, but to us. When we pass on beyond this place, the worth of our memorabilia will pass with us, unless others feel the urge to preserve such tchotchke.

Ha! I pulled it off the top shelf for the first time in forever, and I kept a salad bowl too. Boom!

No one will have the slightest clue as to why a big wooden salad bowl sits on top of a bookshelf in my office. The oversized basin came with six or eight wooden salad bowls that Deb pitched decades ago. I rescued the serving bowl because the whole set came as a wedding gift from two high school friends, Chris Nix and Dick Kelly. I’m not getting rid of the surviving bowl. The wooden tub came from two great friends and neither would remember that they gave it to us, but the gift connects me to my high school years, and I will not part with it. 

In keeping with the wedding theme, I have a never-been-used silver fish dish, a chum-ugly piece of modern art that sits on a shelf in my office because Deb has threatened if ever seen swimming again in the kitchen cabinets, she will catch and release it to the trash. We received this silver serving tray as a wedding gift from a friend whom I met at five-years-old and who lived across the street from 4716 Indiana Ave. We went to Kindergarten together at Harrison Hill Elementary. He graduated from South Side High School and I went to Bishop Luers, but fifty-six years later, we still go out to eat for our October birthdays. I’m not getting rid of this minimalist fish dish that John Hogan gave us. 

I have a wall of bookshelves filled with stranger things that have no value and mean nothing to anyone but me: one large fly from my eight-year-old birthday with a suction cup that stuck to my bedroom mirror for years. Then as a teenager my sister gifted me with a second giant fly that stuck to the lake cottage kitchen mirror for almost two decades. I have a half-century-old, six ounce red cup shaped like a cowboy boot from Mom and Dad: my sister had a blue one, and my brother had a yellow one. I lived the last semester of senior year in high school on the 5th Floor of the downtown YMCA, and when the building got demolished, I swiped a brick. More recently, the shelves house a Duke Cannon Big Brick of Soap that “smells like accomplishment” for Real Men that my nephew gave me a few years ago. 

The nice feature about all these personal curios is they sit comfortably on my shelves, and I get away with keeping them sheltered out of sight in the safety of my office.

The difficulty with Kimball is that somehow, this giant electro music box, who has lost all youthful glow with a few broken teeth and a couple knobs that don’t work, has joined the ranks of these “valueless” sentimental objects.

Kimball’s longevity with us may account for my unwillingness to abandon this super-sized container of musical meh. From the beginning of Deb and my marriage, Kimball has traveled with us to live in three homes: the trailer where Kimball reigned as the centerpiece in the living room; Concordia Gardens where Kimball got demoted to the dining room and received an occasional play from family or friends; and our present “still new” home after 23 years, where Kimball has reposed in silence.

Perhaps, this wooden behemoth—being a special wedding present from Mom—may give the best explanation for its staying power. Maybe the eccentricity of Kimball’s former bells and whistles reminds me of my mom in a strange and good way. She loved music; she could bar chords on the keyboard; she made me take two years of piano lessons as a kid, and although I rarely practiced, I could navigate a few non-crowd-pleasing songs. The keyboard never became my medium of choice, but I appreciate her effort to steer me toward music and learning to play an instrument.

In October of 2022, Mom passed from this life, and our 15-year journey with her dementia came to an end. Ironically, rather than feeling this would be the time to part ways with Kimball, I may have become more attached to this minor-league music maker. When I turned it on for the first time in a decade, I played the few Beatles tunes I could remember. It still works for the most part and still sounds as nasal as Bob Dylan.  

My sister, brother, and I had engraved on our mother’s headstone the following: “Our Mom: One of a Kind” and maybe Kimball reminds me of her. Maybe the slow letting go of my mom through the stages of her illness has a corollary with my unwillingness to send away this antiquated and outdated relic who no longer serves a musical purpose. I could not stop our mom from leaving and had no say over her departure. But as reflective as it sounds, I do have a say with what happens to the 2nd Place “Entertainer Superstar II” that Mom gave to Deb and me in our newlywed days.

Yet now, after almost 45 years of marriage, Deb and I have transitioned to the season of life where we attempt to find the balance between what to keep and what to throw away. And what does one do with this overweight brown hulk of musical furniture that hasn’t exercised in years and cannot be put on a shelf?

I will not give-in to the teenage impulse to place it on a random doorstep and ring the doorbell and run. I cannot bring myself to lug this cacophonous crate to the curb or to drop the mechanized double keyboard off the rooftop of a tall building or to take a road trip to the top of Mount Crumpit to dump it or to camp at Pokagon State Park and with a little help from my lighter fluid friend, sacrifice Kimball for firewood.

I would like to bake a loaf of magic bread for Kimball and shoo it into some enchanted, musical forest with an affectionate wave of farewell. But we don’t have any mythical woods nearby, and no way I could coax Kimball to climb into the car trunk to find one.

Perhaps, I will contact the Island of Misfit Toys to see if they will shelter a big-as-a-large-appliance-box, out of shape, and mediocre-talented musical instrument.

Perhaps, I will organize a Black Ops team with former high school students, whose mission, if they choose to accept, will be to kidnap Kimball in a nocturnal operative, and then drive-and-drop at midnight this musical monolith in the place where all American family dreams come true: the entrance to Costco.  Good people shop there and maybe a Good Samaritan will take the organ home.

Perhaps, I will offer Kimball to the Smithsonian Institution for preservation and safekeeping in honor of my mom. If this iconic American institution declines, then fine, a more worthy treasury for our almost half-century-old organ will be found.

For now, Kimball will stay with me until an honorable closing ceremony and an appropriate recessional to our relationship are created and commenced. Apparently, I have trouble with “goodbyes” –especially the ones without some kind of significant final fanfare: a farewell handshake with photo ops or a thoughtfully handwritten thank-you or a meaningful last word oratory or a commemorative Costco cake. Call me sentimental, but I want a noble ending for Kimball and my relationship. I will not participate in some delinquent, ungracious pitching-dumping-dropping-trashing-and-walking-away ending.

In the end, my ambitious summer Clean-up and Clearance Project failed. I neither cleaned the basement nor said good-bye to Kimball. Social get-togethers, family adventures, knick-knack responsibilities as well as my Ferdinand-the-Bull wanderings through meadows and forests tend to vacuum up the summertime. I also place secondary blame on the unexpected, new family member, Blueberry Dog, who requires constant monitoring as she proceeds to chew up the house.

As August receded and school responsibilities ramped up, the ping pong and Costco tables remained loaded with pictures of Grandma Mills and Cora and family, and the floor looked like an obstacle course of overstacked clutter. Yet now, when I see the miniature-grand old organ, standing as a sentinel to the past, I feel better about the decision to stay together. I think Kimball does too.

“Have a good night,” I tell the multi-colored, electronic wonder in the evenings when I ascend the basement staircase after working in my office filled with doodads and whatnots and trinkets and bric-o-bracs.

“You too,” the venerable music maker pipes back.

Maybe next summer, I’ll finally get the family photos in albums with captions; maybe next summer, I’ll get all the trophy parts reassembled; maybe next summer, I’ll get all the Cedar Point Key Chains chronicled and framed. And maybe next summer, I’ll discover an appropriate farewell for Kimball.

But for now, to quote U2: I still haven’t found what I’m looking for.

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Reunions

For the holidays my extended family converged in Chicago for Christmas after a yearlong coronavirus hiatus.  Before the re-assembly, I developed an aggravating cough with no other symptoms, but could not shake the hack, so I took three Rapid Covid-19 tests within nine days.  If one wants to vex the present population, simply start wheezing around the nearby public and prepare for raised brows and lowered patience. Initially, at the Windy City reunion, I did not hug or hold family members but flung air-fives and wore my mask. I reminded my nephew of his good fortune, since I would not wrestle, he’d receive a free pass from our customary headlocks and smackdown body slams. He patted me on the head and smiled with the confidence and invincibility of a sixteen-year-old. As we all gathered in the dining room to celebrate the holidays, I socially distanced and self-regulated myself to the children’s table.

The Christmas Eve and Christmas evening dinner conversations swung around the room with a familiar ebb and flow ranging from the family cookie contest to the present state of equality for women in the workforce. When the discussion spiked in intensity, recommendations to break into small groups and report back for further insights came with good-natured humor as the conversations volleyed back and forth. I enjoy these table talks, and we picked up where we left off before the pandemic.

My station at the children’s table (counter area) may have benefited all, since from afar I tended to talk less and listen more. At my perch, I had a bird’s eye view of all participants and absorbed the boisterous banter.

We were back.

We would move forward. This homecoming merited warm Christmas thanks and good will toward all, but the contrast of another reunion tempered the celebration.

***

A few weeks before the holidays, I visited my mom. After almost two years, visitors are still not allowed in the “secure unit” where Mom resides. At present, all guests must schedule appointments, and one never knows when her residency may shut down from COVID concerns that swirl in and out of the building. Since visitors have been allowed back, her residency has had intermittent lockdowns, and the reopening has been an uncertain, stutter step affair.

Two staff members brought Mom out to the family lounge, where supervised visits take place. Wood carved bears with “Welcome” signs greet us, and plenty of stock furniture lines the room with pots of synthetic plants in the corners and motivational posters on the walls. With only one family unit allowed at a time, the ample, empty space has a barren and sterile ambience with the scent of disinfectant. The two certified nursing assistants walked with Mom, one on each side, and she stepped with a tentative gait she never had before the pandemic.

“Hey there, young lady,” I said, moving to her side and taking her wrist. I held her arm as she groped along the sofa cushions to find a place to settle. She perked up for a brief moment and turned her head toward me when I spoke, as if to recognize a familiar voice, but soon lulled back into the couch.

I pulled up “Singing in the Rain” on my iPhone to stir movement in this sedated setting and held her hand, but she showed no interest or connection to our past dance duets, and with dull eyes stared at nothing.

This has become the new pattern of our visits. We sit.

Foster Park

Before the pandemic, I saw her weekly, and through the years as the dementia raided her intellectual abilities, Mom and I spent our time walking in childhood places, Foster Park and Pokagon State Park, or strolling down her residential hallway, or dancing in her facility dining room to Elvis and the golden oldies. I loved The Beatles; Mom loved The Beach Boys.

Even with her cognitive decline, I quipped that her constant motion and physical fitness would allow her to outlive us all. Mom spent her life in movement and kept in great shape. As a kid, I watched with amusement as she mimicked jumping jacks with Jack Lalanne, the first national exercise guru, whom she watched on TV. I helped with curiosity as she unpacked his mail order exercising and stretching equipment. Despite the regression of Mom’s cognition, she remained active and we both enjoyed our outdoor amblings and hallway hikes that made these visits engaging and not a burden to endure or a duty to fulfill. We could walk forever.

But this has passed. Our strolls in the park are over. Our dancing, albeit a simple shuffle back and forth, is done.

Now we sit.

***

Despite my gratitude that the pandemic restrictions have eased to allow me to see my mom, our reunion has been a reminder of what’s been lost. For fifteen months, I could not see her at all, so for fifteen months, I did not walk with her on the journey we’ve been on for almost fifteen years.

Before COVID, Mom’s dementia had been incremental, a gradual loss stretched over years. She entered her first memory care facility at a “high functioning” level, which sounds cold, yet with time, one adapts to the terminology. Mom could still read, write, and recall long-term memories. I watched her lead Bingo and help with the activities for her fellow residents. For very brief conversations with new acquaintances, she would seem fine. But Mom could not retain any short-term memories. None. Cora and I would make our get-away when her attention distracted from us, and she would immediately forget we visited and not get angry with the left-behind, caregiver team. In those early years, we often coordinated with the on-duty residency staff for smooth, Black Ops departures. But in time, all of Mom’s memories and mental processes diminished. I sat with her in the activity room when she held up a bingo chip and asked, “Scott, what do I do with this?” She could no longer make the connection to match the numbers. We crossed this milestone together.

Through her decline, I reminded her how to use a fork at the dining room and made sure she brushed her teeth before I left. Her procedural memory kicked in and she would perform these automatic applied skill responses. In time, the hand-over-hand promptings did not reboot such abilities. She could tie her shoes for the longest time, and then this left. She could open the lid of an ice cream carton, but no more, and we passed these points-of-no return hand-in-hand. For my own emotional processing, this gave some sense of letting go.

After the pandemic surge, and upon my return to her facility, Mom could not walk by herself and needed a person to support her.  Over the holidays, I received calls that she fell three separate times. Thankfully, she broke nothing and only had minor bruises. This new stage of her exponential physical decline, although expected, has bewildered me. Mom has become frail. This happened too quickly because I wasn’t there—the pandemic stole this transition from us. For her, I know it doesn’t matter as she can no longer comprehend with any self-awareness. But for me, although Mom and I are still on this road together, I feel like she passed this significant mile marker alone. So did I.

***

Before leaving for Christmas in Chicago, I planned to see Mom, but because my annoying cough would not subside, to play it safe I briefly stopped by her facility to drop off holiday chocolate bars to thank these essential workers for all they do.

In Chicago, as the holiday highlights moved from the dining room table to the rollercoaster bus ride to and from the Art Institute of Chicago in the five-lane swathes of Lake Shore Drive, I could not help but consider the gaping contrast between the twinkling, holiday bustle of the big city and the dim gradations of restrictive spaces that my mom now occupies.

In a Christmas Past, Mom received not one but two Looney Tunes Tasmanian Devils as presents. I didn’t know my sister bought her one too. As someone who lived in constant movement, Mom loved Taz’s characteristic tornado spin. In later life, she purchased a Kawasaki 750 motorcycle and drove it halfway across the country. Though Mom’s velocity through this present world has ceased, our reunion after the pandemic has brought this new, unfamiliar activity to both of us: we sit.

But we sit together.

***

Christmas nightlife in Chicago doesn’t get better for me than family board games and renewed rivalries around the table. If the playing pieces scatter across the board in frustration, we’ve witnessed a fine game, my friends. As we kids have gotten older, the attempt to behave ourselves as adults and be better examples to our children remains a worthy goal, but doesn’t always prevail.

In one such game of Splendor (the board game of choice this Christmas), the movie Hoosiers came on, where another contingent of family sat in the adjacent, living room and watched on the wide screen. I paused my battle plans to briefly lean against the adjoining wall trim to catch a favorite scene.

The basketball team at Hickory High School, population 60 students, has made it to the Indiana State Finals. Dennis Hopper (nominated for an Academy Award for his role) plays a drunken father trying to make right as an assistant coach, but he relapses from the pressure of the tournament and ends up in a hospital ward. His son, a starter for the team, visits him in the antiseptic psych unit before the championship game. The dad attempts to apologize, and the son interrupts, “It don’t matter Dad. You’re gonna get better.” 

I appreciate this moment in the film:  It did matter to the son, but how could a teenager be expected to articulate this? I admire the hope this scene gives in spite of the possibility that his dad may not get better. As the movie portrays, for a complexity of reasons, people we love, get broken.

Love will not repair every fracture or eliminate loss or guarantee safe passage through this life, but it helps:  Love “always protects, always trusts, always hopes, always perseveres” (1 Corinthians 13:7 NIV). A redemptive hope abides where love resides.

Dementia cascades in one inexorable direction: downward. My mom will not regain what she has lost: her memory, her speech, or her physical and cognitive abilities. Medical science cannot fix this. Love cannot fix this. Not in this life. But I adhere to the Christmas Story’s promise that because of the baby wrapped in swaddling clothes, the time will come to reunite and restore what we have lost in the resurrection of all things. This hope allows us to walk love’s painful path of loss with tidings of comfort and joy.

And in the meantime, I will pull up a chair and sit. Mom and me. Maybe I’ll read to her and see how that goes. She read the Uncle Wiggly stories and the Little Golden Books to me before bedtime as a kid, so maybe I’ll return the favor. We will see. I plan to stick around until she leaves this place for the far better one.

The father/son scene in Hoosiers ends with the ballplayer saying he has to get back to the team, and his dad shares his wish to be at the game. His son will soon enter the applause and cheers of playing for a state title in the spotlight and pageantry that surrounds an Indiana basketball championship. Yet this teenager takes the time to visit his dad. The small town drunk who embarrassed himself and his son in public, and yet here they are. Maybe the father will get better or maybe he won’t, but love gives enough light to endure the dark spaces.

Back at her secure unit, at times my mom will still say, “Yes,” and “No,” and I always leave her with, “Love you, Mom,” where on occasion, perhaps welling up from yesteryear, she looks at me and says, “Love you.”

Mom and I didn’t get the Christmas reunion I hoped for before leaving to see family in Chicago. But if we had, and if I could have said anything to my mom who loved the Christmas TV Specials and the tree decorating and the family car rides looking at holiday lights, I would have shared the same words that teenager in Hoosiers said to his father in the hospital ward before leaving for the big game:

“I’ll be thinking of you.”

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Mother’s Day in Quarantine

In early March, Mom’s residency called to say that for safety purposes, they needed to establish limited visiting hours. I completely understood and swung by to see Mom on her birthday, March 9th. A few days later I received the call that because of the pandemic, family would not be allowed to enter the facility until further notice.

Today is Mother’s Day, and with the quarantine still in effect, I have not seen Mom in two months since her birthday. Family members of other residents will experience the same mandatory separation. Social media offers no connection or comfort with loved ones who have Alzheimer’s or Dementia. No one knows how long such safety measures will last, but this new normal is not normal. Maybe the silver lining will be a new appreciation for those we care about. The severed access to loved ones accentuates the value of time with one another, however small the moment may seem.

For Mom’s birthday, I purchased a six-dollar pint of Haagen Daz Triple Chocolate ice cream, and she ate every spoonful. She has had a lifetime love affair with chocolate ice cream and Pepsi.  She often mused with theatrics and dramatic flare, “The day I can’t eat ice cream is the day I’m dead,” and in the battle with Frontal Lobe Dementia, her medication came camouflaged in chocolate ice cream or in Pepsi as a miracle cover up that worked every time.

The last time I brought over chocolate ice cream (before this birthday visit), she wouldn’t eat any, which had never happened before.  I couldn’t get her to recognize her favorite indulgence, and she kept brushing the spoon away. I used all my sonly charms and magic but couldn’t get her to take a bite.  I loaded the spoon and tried to bring it to her month, but she swatted my hand away. I attempted to press her fingers in the ice cream, and then maybe she would lick her lips and viola, discover chocolate.  Mistake. This only annoyed her, and when she gets irritated, look out my friends, she doubles in size and triples in volume and makes the bravest guardian of the galaxy slip away in fear. I halted the chocolate assault but not until Mom, the table, and I were mottled in spoon-size melting ice cream dollops.  Discouraged, I did not try such ice cream shenanigans again, until my birthday visit two months ago.

She ate every bite.

Bringing comfort to our parents brings comfort to us. It’s a reassuring feeling to do something for the ones who have done so much for us. For those of us who travel this path of Alzheimer’s or dementia, we walk beside the ones who raised us and who continue to disappear from us. Sitting with them, standing with them, spending time together comes redolent with hope, if only for a moment, to catch a glimpse of them again. Maybe I kept up the ice cream bombardment in an attempt to keep one last vestige of the mom I knew. Yet, I realize her illness is progressing exactly how the psychiatrist said it would thirteen years ago. Mom has moved from simply repeating questions asked earlier in conversation to the place where her speech impairment and regression allows only a few distinguishable phrases: “Thank you” or “Love you too.”  And someday this too shall pass away.

On a lighter side, up until a few years ago, we had entertaining conversations, at least for me, because I never knew what she might say. Once while driving to our house, she said, “Are your parents going to be there?”

“One of them will be.”

“Good.”

On that same visit, folding clothes together, out of the blue Mom said, “Is your Mom here?”

“Yes she is.”

“Did she say anything to you?”

“Yes, she did.”

“So, we’re okay?”

“Yes, Mom.  We are okay.”

“Good.”

I have no idea which synapses fired in her brain but often found such conversations endearing. I suppose this is grace. Colorful fragments from the past that light up the present.

When we first started this journey in 2007, I would pick Mom up from her residency, and we often ran errands together. I multi-tasked by spending time with Mom and by getting other stuff done too.

On one of our first visits to Wal-Mart, Mom grabbed a Kleenex box, opened it, blew her nose and put the box back on the shelf.

Always an adventure.

I put the Kleenex in our cart, and as we checked out, Mom saw the open Kleenex box and exclaimed for all to hear, “They don’t expect us to pay for this.”  It was not a question.  She was outraged at such nonsense.

On another shopping excursion, Mom took notice of a well-built, blue-jean-cut-sleeve-thirty-something guy in the fishing gear aisle. She no longer wanted to be with me but with him.  He had no idea the danger he was in, and unfortunately, as he walked down the aisle, Mom locked in on him and headed straight for him.  I tried to steer her away, but she was not having it, and when I attempted to bodily block her view of him, she threw a fit. “Get away from me!” which put me in an awkward dilemma.  If this idiot would get out of her sight line, she would soon forget about him, but he kept walking down the center aisle oblivious to the lifetime memory burn he might experience in Wal-Mart.  I needed to get Mom out of the store, but I became the enemy.  Thankfully, before the scenario got out of control, an understanding, young adult employee helped me walk Mom out to the parking lot.  Once we got in the car together, she was fine.  I became her good friend again. Dementia is like a box of chocolates on clearance, you never know what you are going to get.

These last couple years, I have not had the confidence to take her out by myself, so we walk around her hallway or amble through the facility stopping by the piano to play a few chords, or we walk down the Norman Rockwell picture hallway that represents an era of her life.

On another visit after the first of the year, we settled in the dining room and at the adjacent table sat a resident whom I have gotten to know. I admire his determination to walk independently as he moves at the speed of inches. I have met his son’s family. Good people. An almost instant camaraderie bonds those who walk the same path. During the dining room bustle, in random wonder, he burst into song with a strong, vibrato voice and sang in entirety, “Jesus Loves Me.” When he finished, everyone, staff and residents, remained quiet for a long moment.  I broke the silence with applause. He locked eyes with me, and struck out into the song again. I’m sure he sang as a church choir soloist.  After his strong encore, he faded back into his chair and disappeared. But I saw the glimpse; I saw the marvel revealed in this marred world. These sequestered octogenarians, these hidden lives, these music boxes closed, these finished books, these parents may have more to write, more to sing, more to say to us before they cross Tennyson’s bar:

Sunset and evening star,
          And one clear call for me!
And may there be no moaning of the bar,
          When I put out to sea,

As a child, my parents were an age beyond anything comprehendible. Yet, as my decades add up, Mom is only twenty-three years older than me, which now seems strangely small, a blip of time. Reflecting on this Mother’s Day, like our aged friend who sang in the dining room, I hope to get the music out.  And with Mom and the residents at her facility, maybe there is more music to write together.  These moments with our loved ones are like individual notes: brief, bright, ordinary. But played together they form a melody, one that we remember, one that protects us against the pangs of temporary separation.

A few residents from Mom’s facility have passed away from the coronavirus.  I cannot imagine the stress of the staff or the sorrow of the families. I pray for Mom’s safety. When I see her again, we’ll celebrate with another six-dollar triple chocolate ice cream pint and a Pepsi.  We will have a festival, the two of us. If this reunion does not happen in this place, then we will talk again and have the party in the better place, where time (as far as getting old) will be no more, where the old becomes new, where the broken gets fixed, and where the ice cream is exceptional.

For tho’ from out our bourne of Time and Place
          The flood may bear me far,
I hope to see my Pilot face to face
          When I have crost the bar.
— Alfred Lord Tennyson, Crossing the Bar

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Thanksgiving 2019

My sister didn’t believe the sincerity of my pain when I fell in a heap to the floor after Thanksgiving dinner.

“He’s just trying to get out of doing dishes.”

Not true.

I crumpled under the massive weight of the food intake, and any immediate attempt to stand up might set off an eruption, plus I felt dizzy with prospects of blacking out.

My parents let me groan in the hallway without any lecture on gluttony or starving children in other countries. Perhaps they felt bad for not noticing the 8- or 9-year-old miscreant shoveling down a third helping of mashed potatoes or scooping up backhoe proportions of the canned cream corn or sliding multiple slices of canned cranberries into his face as the adults indulged in conversation. Maybe Mom took my collapse as a compliment. Growing up, except for her homemade, pressure cooker bean soup that needed a galloon of milk per spoonful to swallow, I gave her four stars on a Four Star scale for her skills as our home chef.

Last month, I swung down to see my brother in Winston-Salem, North Carolina for a whirlwind visit. We enjoyed a weekend basketball tournament and marching band competition with my niece and nephew as well as their annual Pumpkin Carving Party, a smashing success. In a kitchen conversation, my brother mentioned Mom’s green bean cuisine, a culinary work of art that we grew up with as a dinner staple. No one made green beans better than our mom. My brother, a distinguished English professor, prepared her savory masterpiece for a group of sophisticated friends, and after they commended him on such fine dining, his guests were duly surprised, and perhaps disappointed, to hear the ingredients.

The secret recipe: open a can of green beans, drain the water, empty into a pan, and melt Velveeta Cheese over the top.

Serve.

Like the “peasant dish” in the Disney movie Ratatouille, my mom transformed the common into the extraordinary. I still prefer skim milk over whole milk because I grew up drinking Carnation Powdered Milk, poured out of the box and mixed in water. The “butter” I loaded on toast wasn’t butter at all, but Imperial margarine, the less expensive substitute. The Thanksgiving slices of “cranberries” that I could eat forever turned out not to be actual cranberries, but a congealed jelly sauce. Yet, except for Mom’s nasty bean soup and maybe her concrete meatloaf, I ate like a king as a kid.

Today, Mom and I continue traveling on a thirteen-year journey with her dementia. She kept in good shape throughout her life and remains fit as she spends her days ambling around the hallway at her residency. We take a walk almost every visit, and like in my childhood, I go where she leads…with a new caveat—“Mom, let’s not get into trouble”—when she wants to enter another resident’s room or rifle through a nurse’s station.

I usually visit during the dinner hour, and a year or so ago, she held up a fork and asked, “What do I do with this?” I demonstrated for her, and the memory kicked in, and she ate appropriately with her fork and spoon. Lately though, she has started using fingers more than silverware, and her procedural memory does not revive when I show her how to hold the utensils. Last Thursday, for the first time, I started feeding her. We continue to cross new benchmarks of unlearning.

After dinnertime, we used to sit together and watch movie musical scenes on YouTube starting with Singing in the Rain, and then whisk around the musical archives wherever our whims took us. The iconic dance numbers held both our attention, and we could belt out the lyrics to “Good Morning” as effortlessly as Debbie Reynolds dancing down the staircase in high heels.      https://www.youtube.com/watch?v=qu4v5hB1dKk

Lately, Mom’s cognitive regression has diminished her interest in such memory lane escapades, and she will get up at random and walk away as casually as Gene Kelly strolling down the city streets on roller skates. Now I visit with a book in hand for personal reading and can leave without any concern of her verbal protests at my departure because I wait until she wanders off. I no longer hold the invisible, familial tether to keep her close.

As of today, Thanksgiving, I have visited Mom forty-eight times this year and will have met my New Year’s Resolution to see her at least once a week. Mom has not known who I am for a long time. She doesn’t remember the names of her children or her calling upstairs in the morning, “time to bite the cheese,” which meant to come down for breakfast, hot oatmeal with brown sugar or pancakes with bananas or something good. She doesn’t remember the extra plate of Thanksgiving dinner the staff gave her tonight. Mom doesn’t remember any of my visits. She enjoys me only as a momentary, friendly face and hand to hold, and in her temporal condition, the consistency of my presence no longer matters to her.

It matters to me.

I suppose in a small way, this Thanksgiving, it is my way of saying, “Thanks, Mom.”

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Mother’s Day

Mom dumped a stack of clothing on my bed the size of Mount Olympus. The shear mass paralyzed me. She said I could not watch Hercules until I folded all my clothes. Such an impossible feat stretched beyond my physical capacities as a five-year-old, but an idea struck me. Dangerous, but necessary. I gathered up all my belongings, entered the bathroom and tossed everything back down the laundry chute. Brilliant. Watching The Mighty Hercules made the eventual reckoning with Mom’s fury worth the reeducation I received about chores, responsibility and refolding clothes forever and ever.

Half a century later, I reversed roles with my mom and became her primary caregiver. This spring her memory care residency sent home a newsletter note encouraging guardians to clean out winter clothing from overstuffed closets. Mom wears and shares the clothing of her community by virtue of dementia. On my last visit, I don’t know whose green slacks and blouse she had on, but they looked lovely. I have learned not to ask too many questions. Mom’s apparel disappears and reappears, except for the beautiful winter coat my sister bought for her that vanished last Christmas. At present, Mom wears an unknown wedding ring that we cannot pry off her finger, and with no one searching for this symbol of marital vows, we have chosen not to provoke her wrath until someone complains.

On a recent visit, motivated by the residency spring-cleaning note, I felt inspired and dumped all Mom’s closet contents onto her bed. We would give away or pitch whatever she didn’t need. My sister could shop for any missing necessities. My knowledge of women’s apparel remains minimalistic. In the early years of marriage, I failed Shopping With Your Wife 101. I would get unfathomably bored and lower myself to reading the directions on the back of hosiery boxes. Fortunately, tired of my sighing and Braveheart cries for freedom, Deb released me from such torture, and our marriage survived. With my mom, I underestimated the amount of stuff that could be packed into a medium size closet. Her bed looked like Mount Olympus. We filled her couch, chair, and top of her chest-of-drawers with piles clothing and bric-a-brac.

The sequin high heels that Mom wore at my brother’s wedding 20 years ago, comparable to Dorothy’s ruby slippers, reappeared. The Mickey Mouse sweatshirt from yonder decade returned to circulation. Single socks and shoes, none Mom’s, came out from the darkness into the light.

A curious crowd of Mom’s peers gathered and a party scene ensued. Mom welcomed all entering wanderers with gestures and jabber. She could no longer speak in full sentences, her words ended in unintelligent syllables, but her tone remained inviting, and she was (and still is) never at a loss for conversation.

One lady replied to her, “Oh honey, I only speak English.”

Another lady with precision steering wheeled herself with swift determination into the front of the action and demanded Mom’s bright red sequin top laying on the bed. “That’s mine!” Her pitch and delivery came flying as deadly as a 90 mph fastball aimed at my head. I relieved her clenched fists and pursed lips by saying, “Yes, it is. Here you are,” handing her the twinkling sequins. She relaxed to an appreciative, “Thank you,” and soon forgot the prize, which I reentered into the inventory.

In the movie, Collateral Beauty, Edward Norton played the co-owner of an ad agency that may not stay solvent. He moved in with his mother who swings in and out of reality. She informed him that the werewolves were meeting outside at all hours of the night, and he answered by saying he had a raccoon friend on the Task Force with a wire bug hidden by the trashcans. They would tape everything the werewolves said and planned to bust them on a RICO statute. His mom said she didn’t know anything about that. She patted him on the knee and smiled. The movie received justifiably bad reviews, but this was a sweet, endearing scene that I could relate to. I don’t know if the technique of entering into another’s reality is backed by evidenced-based research, but from a decade of personal experience, I agree with the wisdom.

A lady coddling a Raggedy Ann doll joined the closet cleaning party and gently placed Ann at the head of the bed.  With her hands free, she began to  rummage through the piles, and I commented on her beautiful baby and expressed my care to work around her sleeping child. The lady beamed.

A pair of matrons walked in together, and one thought I was her son, “Brad? Are you my Brad?” and her friend asked, “Are you her son?”

“Yes.”

“How nice to have your son come and visit you.”

Mom enjoyed the company, and the faint echoes of hosting parties in my father’s early career reemerged as she danced around the guests with welcome greetings of gibberish.

Ladies started folding clothes and examining various tchotchkes. Only one elderly gentleman entered the closet cleaning festivities. He saluted us with an uplifted hand of greeting and protection, “Everyone okay in here?”

Mom returned his greeting with a friendly tone and pleasant pat on the arm, but upon his closer examination of the mess and the folding party exercises, he left for more suitable adventures.

A tidal wave of haberdashery crested on top of the couch, and the swelling tsunami broke upon a lady who sat down. She disappeared beneath the flood of clothes, a moment so comical that I refrained from immediately pulling her up, maybe out of curiosity to see what would happen.

In The Mighty Hercules era of childhood, I sat in the boat and watched Mom swim a mile across the second basin at Lake James from Lone Tree Point to Bledsoe’s Beach. She kept in great shape throughout her life. Cora and I inherited her waterbug abilities, and we had a run of a dozen years in which we took Grandma Mills to Pine Lake in Berne, Indiana. My wife referred to it as the mud-brown, glorified swimming pit, but for The Kid, Grandma Mills, and me, Pine Lake was the perfect summer swimming hole. We continued to take my mom to Pine Lake when she moved into her first secure memory care unit. Our last visit came when she slid down the black tunnel. We knew Grandma Mills was fading, and we had to be careful, so I would go down first, and Cora would follow, after directing and sending her grandma down the slide. On this last attempt, Mom disappeared under the water at the tunnel exit and never came back up. I dove in, lifted her out, and apologized to the lifeguard stationed there. We did not take any more chances, and Pine Lake became another ending of good memories.

Like my mom at Pine Lake, the lady submerged in the couch, became disoriented and began to kick and flail. She sputtered a number of unmentionables as I brushed away the clothes, and soon she settled comfortably amongst the outfits. The swearing that surfaces from these elderly saints can be surprising, discouraging, or entertaining depending upon a caregiver’s experience, point of view, and humor. I have said to my daughter that if I get struck with the disease and start shoveling out creative profanities she has never heard before…fill my pockets with breadcrumbs and shoo me into some Enchanted Forest at the edge of town. I will see her at the restoration of the all things when I am young and sane again.

As the folding festival wound down, Mom and I filled three bags to drop off at the Goodwill. The party-goers began to wander off, and I thanked them for visiting and smiled as some left with parting gifts, snatched trinkets, and five-finger discounts, all which may reappear in time back in Mom’s room.

My brother, who lives four states away, has often expressed his appreciation that I take care of Mom, but I’m the one who should be thankful. These moments are the good stuff of life, albeit, intermixed with cuss-worthy frustrations and I’ve-got-to-get-away-and-reflect-alone sorrows. This Mother’s Day, I find myself grateful. Many my age have lost their parents, but mine remain. My sister and I will visit Mom today and go for a walk, taking turns holding her hand. We will probably work a 300-piece puzzle, which Rochelle and I can put together in an hour even with Mom pulling the pieces apart. We will smile at each other when we say, “Love you, Mom,” and she responds with “Thank you” or “Love you, too,” and then rambles into unknowable conversation.

Our mom is one of the unfortunate 5% to acquire the disease in her late 60s. Statistics indicate that people who reach their mid-80s have a 50% chance of getting Alzheimer’s or dementia. Such a sobering reality causes me concern, especially when I can’t remember why I just walked into the garage or what I was just about to say.

With this in mind, I want to remember all the good in life with Mom. We are not done yet, although the woman who swam across Lake James, slalom skied at night, and cannonballed off the 30-foot platform at Pine Lake, has left us. In a life to come, she and I will pull up lake chairs by Heaven’s crystal sea and discuss these caregiver days. I hope she will be proud of me. If my mind passes before I get there, and my physical shell continues here, I hope my residual effect for Cora will be like the gentleman who gave the brief cameo at our closet cleaning party.

“Everyone okay in here?”

 

On Golden Pond

The choir assembles
as we take our seats
under the canopy of
a eucalyptus tree—

waltzing mallards,
twirling swallows,
bowing reeds—
singing summer songs.

We sway with the
orchestra in the breeze
and watch the sunrays
dance upon the water.

Tomorrow
she recalls
nothing
Today.

We live in
the moment,
Mom and me.

 

Mom. Taken at Lake James in the summer of 1977.

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Perspective

final-four-headerIn the Ohio State versus Kansas 2012 Final Four, rising star Deshaun Thomas, who attended my high school, played for the Buckeyes, so after taking Mom to the Y, we headed back to her memory care facility and settled in to enjoy the game. Mom started down the well-worn path of wanting to go home, being held hostage, keeping her in prison, calling me worse than horrible, and yadda, yadda, yadda. I wanted to watch a fellow Bishop Luers High School graduate play on the national stage, so I brushed aside Mom’s familiar tirade. Tuning out her incessant litany of blah, blah, blah, I told her to chill and kept my eyes fixed on the game.

Mistake.

The blow glanced off the side of my face and slammed into the sofa. A direct hit could have broken my nose, or at least set the stars in motion around my head. With Jedi instinct, I whirled around and pinned her arm to the couch.

Nose-to-nose I leaned in and foamed, “What are you doing? What is your problem?

In a death stare, she growled, “I never want to see you again.”

“Fine!” I shot back, “That would be fine by me! That would be just great!”

The spontaneous fury sparked a simultaneous combustion of thoughts that fired across my brainwaves:

         Scott, what are you doing? This will have no positive effects.

         Mom won’t remember anything I say. This will have no negative effects.

         Maybe, an untethered venting will do me good, be good therapy for me.

         Maybe not.

         Maybe.

I made the conscious choice to blast away and ripped up the room in a verbal diatribe. “Maybe, I’ll never talk to you again! What do you think of that? Huh? I’ll leave and not come back. How ‘bout them apples?” A sophisticated repartee of twinkle-twinkle-little-star-what-you-say-is-what-you-are from a mature, fifty-year-old. As I let it fly, I also thought, Whoa, am I going too far?

Someone knocked on the door.

“Scott, is everything alright?”

I recognized Brenda’s voice, the night-duty nurse, a wonderful friend and support for Mom. In a lightning flash, I swirled back to my seat and prepared to point a finger at my mother and confess, “She started it,” with the follow up, “She hit me first.” But the door didn’t open, so I said with the best calm voice I could muster that all was well.

Mom and I sat in silence for a long time.

       Yep, too far.  Great job, Scott.  Idiot.

Last summer, my daughter sent me via Facebook a video excerpt from David Foster Wallace’s commencement speech at Kenyon College, This is Water. Wallace departs from this-is-water2the customary aim-high, be-all-you-can-be blather at such occasions and challenges the graduates to shake themselves from autopilot thinking: the unconscious assumption that we as individuals are the center of the universe and all life revolves around our personal needs.

This natural inclination will blind us from seeing the true value in others. Our automatic default setting registers with certainty that our all-too-common, petty frustrations (getting stuck in traffic, waiting in long checkout lanes) are caused by all these annoying people. Instead of seeing their worth, we see them as obstacles in our way.

Wallace posits that we have other options. He states that the real freedom of real education is we get to consciously decide how we are going to view others. We can choose to think the best in others. This takes disciplined effort, and we will not always succeed. At times, it may not necessarily be reality, but to do otherwise leads down the miserable road of non-thinking autopilot: “The alternative is unconsciousness, the default setting, the rat race, the constant gnawing sense of having had, and lost, some infinite thing.” We forfeit the wonder, the hidden grandeur in people: love, fellowship, and unity.

At nineteen, I worked at a church camp as a summer counselor. We had two weeks set aside where hundreds of inner city students received sponsorships and attended camp. The impressive program gave children who didn’t have such opportunities a week to swim, fish, boat, hike, play sports, and hear the Bible taught creatively with fun skits and activities. (For one sketch, I dressed up as the devil and ran down the aisle. Mistake. I got kicked, spit, scratched, smacked, mauled and barely made it out the exit alive.)

The first week I had a crew of 4th and 5th grade rowdies with a few standout wild ones. We had a good week, but keeping them corralled 24/7 for six days presented no little challenge. With one student, I had a Clint Eastwood, “Go ahead make my day” showdown at the lodge. A tough kid, who exhausted my patience, and I fantasized about squeezing his face (and foul mouth) in a headlock until the end of summer. And it got worse. He bewildered me on that last, fateful Saturday by saying he received permission from the camp director to come back for the second week, and also, he requested me as his camp counselor again. He smiled as if he had planned some new and improved deviant behavior to experiment with on me. I was not a happy camper, but said I would be glad to have him again.  Lie.

I don’t remember anything about the second week, except the end. On the last day, after two weeks of hell with this flippant, rough and raucous kid, he pulled me aside to talk. He started out by whispering in my ear so no one else could hear, and he ended up in full-blown tears.

His parents were getting divorced, and he didn’t know what to do.

Perspective.

His story, and a few others like him, began a paradigm shift in me that continues to this day. Young people (and old people) are not often as they appear.

Many have well-hidden hardships and sorrows, “even in laughter the heart may ache” (Proverbs 14:13), but they press on. If we operate on our natural default setting that we are the center of the world, if we don’t pay attention, then we never see the nobility of their lives. We waste away our days on ourselves, unaware of others. We will be the ones who lose.

Chicken SoupCora and I read dozens of the Chicken Soup books as she grew up. The “tough stuff” series made for great discussions. Some stories choked me up so bad I couldn’t finish reading. The Kid would grab the book with the usual comment, “Daaad, really?” followed by an occasional, “You are so pathetic,” and she would finish the story. What can I say, I like happy endings…when good stuff happens to people. Sheenagh Pugh’s poem, “Sometimes,”strikes me:

       A people sometimes will step back from war;
       elect an honest man, decide they care
       enough, that they can’t leave some stranger poor.
       Some men become what they were born for.
       (excerpt)

Maybe the Apostle Paul, writing from prison, Bibleunderstood seeing the best in others and in life when he wrote, “Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things” (Philippians 4:8 TNIV).

St. Paul and Wallace’s wisdom takes conscious effort, because we have the natural tendency to fall into what psychology calls the Fundamental Attribution Error. Simply stated: if I run through a red light, I have good reason to be in a hurry; if you run through a red light, you’re an idiot. We judge ourselves by good intentions and justify our bad decisions by external factors, so it’s not really our fault, but if others make the same bad decisions, we automatically assume they have character flaws.

Choosing to see and think the best in people may at times miss reality, but it is not naïve. Consider the gains worth the risk. How many students could be pulled back from the darkside into the light and morph into something beautiful if just one person believed in them? Could that make all the difference? If someone proves us wrong, even then, to quote Shakespeare’s Hamlet, “Lord, we know what we are, but know not what we may be.” How true with youth. Choose to see beyond what they are (and the moronic things they say and do), and view them from the perspective of what they may become. This conscientious thinking that Wallace articulates will add value, and maybe some compassion, to a messed up world. Given my own propensity to do stupid stuff, I will take the risk.

G.K. Chesterston, the great Catholic thinker, author and prolific essayist, responded to a London Times newspaper inquiry, “What’s wrong with the world today?” with two words composed of three letters.

“I am.”

Sitting with Mom at the Memory Care Center, after my head-spinning blowup, in silence I got up and walked out the door, shutting it behind me. I stood in the hallway, waited for a minute, and then swung open her door and walked in.

“Hi, Mom! Want to watch the ballgame together?”

Sitting on the couch, she looked up at me with surprise and held out both arms for a hug and said, “Scott! Great to see you!”

Mom’s dementia allowed me a retake, a second chance, a gift we don’t often receive, but…

“It is never too late to be what you might have been.” –George Eliot.

 

https://www.youtube.com/watch?v=0lu2e-q8ntM

“This is Water” –David Foster Wallace

David Foster Wallace

 

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As We Are

Last month, my mom’s residency had their annual Back-to School Carnival, and a large chunk of extended families gathered for a major league cookout and block party. Mom and I strolled around the get-together enjoying the sights and sounds. The Komet Hockey and Mad Ants mascots showed up for selfies and entertained the children. Little ones bounced off the walls in the Moon Walk and hurdled down the big, blow up slide. Some kids who could not throw a softball with any accuracy ran up and smacked the dunk tank target with balloonstheir hands to send the residency employee into the water below. A few helium balloons untethered and meandered up, up and away. A few residence also attempted to wander off, but were quickly reconnected to a nearby hand.

The facility provided a shaded area for farm animals to repose. Mom grew up on a farm, so we ambled over to pet the chicken, piglet, lamb, bunnies, and pony. She brushed the feathers of the domesticated chicken and said, “Nice bunny.”

BeatlesThis late summer festival also featured live music from an impressive senior citizen singer and guitarist, who could still croon and run his fingers up and down the frets with ease. No question in an earlier era, he swaggered as a 60s or 70s rocker. I envisioned his wisp of white hair once housed a Beatles moptop or a stylish, longhaired 70s shag. But, alas, as we age, we begin to merge in appearance and all start to look the same.

Mom and I sat on a park bench enjoying the music, and I mused on the spectacle of my fellow guardians. Most of us found ourselves slipping past midlife. We wore extra pounds, yet stood in line for seconds at the carcinogenic hot dog stand while grazing on the buttered popcorn and cotton candy because who could resist the party concept called “free”? Most of us indulged in a bag or three of Doritos or barbecued chips and washed down the palate with a slushy. The pavement stuck from punch and pop spills, and the tables began to resemble Jackson Pollack paintings with ketchup stains, mustard splotches, cheese drippings, salsa droppings, and syrup. Hot and sluggish, the majority of my fellow caregivers, along with me, tried to navigate this event the best we could with our aging parents, whom in a cognitive sense had left us, and as the old-timer played yesteryear’s music, we adult children wrestled with the disappearance of the parents we knew.

Two weeks ago, my wife, daughter and I took Mom to the Pixar movie, Inside Out. My mom has developed the habit of waving her arms like an orchestra conductor when she hears music play, which would distract any serious movie viewer, but no one sat too close to us. As people entered the theater, from her seat, Mom reached out her hand to grasp these moviegoers and said, “Love you, honey,” and “Hi, sweetie,” which I considered quite endearing, but she startled more than a few adults who could not slip past us fast enough. I felt a rush of irony during the movie in the scenes where the Islands of Personality crumbled into the dreaded Memory Dump, and when the minor character, Bing Bong, vanished into non-existence.  Over the years, I have watched Mom disappear, and sitting on the park bench at the Back-to-School Shindig, I knew the other adult children had witnessed the same.

Yet, as I reflected upon these pictures framed in the hot, sticky summer afternoon, and appreciated the nursing home for providing this multi-generational activity with the collision of opposites: high-energy children bouncing around our fading parents; and as I observed my peers attempting to bring, if only for a moment, a twinkle of recognition into dimmed eyes, I found myself welling up.

Something seemed admirable in all this. A nobleness in the mess of life. In the midst of a fractured world, one could see the genuine effort to care. A middle-aged woman steadied a tottering, confused gentleman wearing a veteran’s cap, who in youth probably considered himself invincible. She led him to a folding chair and helped him with his nachos. Another lady, whom I met before, walked her dad around the parking lot. They moseyed past us, and I gave salutations, which she returned, as her father stared into space. We, the adult kids, strove to make comfortable the husk of our parents whom would never return to us in this life. We returned their love; as imperfect as they were; as imperfect as we are. Age could not dim this, and in paradoxical beauty, maybe this love shines brighter against the backdrop of a decaying world.  Treasure in jars of clay.

This summer I stopped at a new Subway location, and two sharp high school guys bantered behind the counter and worked well together. “Welcome to Subway! What tasty delicacy can we make for you today?” They could have easily emceed their high school talent show, and they both entertained the customers. “Want some hot, hot peppers on this fine sandwich? Could I perchance interest you in our fresh baked cookies?” In front of me, an elderly couple tapered up to the counter, and the wife stumbled over her words to tell the “boys” what she wanted, and she made little sense with annoying slowness. The husband interpreted for her. I watched the guys continue to stay amicable, although they glanced at each other and seemed to hold back laughter and/or criticism. Yet, they carried on like true professionals, and when the elderly couple shuffled out the door, I thanked the young men for their patience and cordiality.

The one who took their order said, “Dude, they shouldn’t be driving.”

I said, “I’m sure the lady doesn’t get behind the wheel. Good thing for us.”

We laughed, and then the other teenager said something that surprised me, “Yeah, just trying to pay it forward for when I get old.”

What an insight. Most teenagers, and adults (self included) don’t look too far past the present, but those who see beyond tomorrow may be the wisest among us.

I shared with these two high schoolers a quote that a special youth leader, who volunteered in youth ministry and spent his entire career working with the elderly, shared with me, and I have not forgotten it:

“As we are, they once were; as they are, we shall become.”parkbench

After sitting for some time with Mom on the bench at the Back-to-School Party, with no little effort, I got up and got her up, and took my mom by the hand, and we danced in the parking lot.

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True Grit

Last night, I watched the Glen Campbell…I’ll Be Me documentary on CNN about his struggle, and his family’s struggle, with Alzheimer’s disease. I don’t know how the critics will rate this film, but I loved it. Four stars. I remember watching him in the original True Glen CampbellGrit with John Wayne and got upset when Campbell’s cowboy character died in the end. I also watched his TV variety show and would sit enamored at his lightning guitar riffs. Although my friends rocked out to heavy metal, Campbell’s song “Gentle on My Mind” was the first tune I learned on the guitar. Most people don’t realize his beast-mode finesse as a guitarist. Until last evening’s broadcast, I didn’t know he subbed as a Beach Boy for Brian Wilson for a season.

In this documentary, I appreciated his family’s willingness to share a glimpse of their personal life backstage, and I applauded the family’s love and courage to take their famous father and husband on one last road tour, exposing him and them to the risks. I identified with them. Taking my mom out in public in our eight-year dementia journey remains a risky business. Forrest Gump’s famous quip may be overused, but it rings true for this disease: “Life [with an Alzheimer’s or dementia loved one] is like a box of chocolates. You never know what you are gonna get.”

In Campbell’s documentary, we are drawn into the tension with his family not knowing what he will do in a concert. Anything may happen on the stage, including his wandering off it. Instead of polished performances, we witnessed something real and winsome about the mess of life, tinged with adventure. In the middle of his first song, the words on the teleprompter disappeared (Strange for some to learn that Alzheimer’s patients can read. My mom lingers in the later stages of Frontal Lobe Dementia, but she can still read. Weird.), and the band, which included three of his children, stopped playing and everything halted with a thud. Yet there was something wonderfully authentic about this glen-and-ashley-campbellperformance. At one point, he couldn’t remember his daughter’s name, and she guided him with grace into the next song. They played Dueling Banjos together, and he fingerpicked on the guitar in perfect cadence. Music is an amazing language. In a small way, I could relate. Three weeks ago, I took Mom to an Amish song service they had at her residency. Mom sang loud and clear every word of the first two verses of Amazing Grace right along with the singers. She loved it. So did I. Seeing Glen play a duet with his daughter revealed an endearing vulnerability with no little bit of courage on her part knowing anything could happen.

Glen’s wife, Kim, shared struggles from home and travel life too. She gave a humorous illustration from their touring. Some hotels have doorbells on each room suite, and Glen would mistake these doorbells for elevator buttons. He pushed them. People would answer their door and meet Glen Campbell. Although most caregivers don’t have famous family members, we can identify with much in this documentary. In public and in private, we just don’t know what may happen next.

Cora and I always enjoyed taking Grandma Mills to the dollar theater. Long before Mom’s dementia appeared, we saw dozens and dozens of movies throughout The Kid’s middle and high school career and often preceded or concluded these movie-going experiences with trips to the local ice cream shop. As Mom’s dementia progressed, Cora and I learned early-on to sit in the back row as Grandma Mills began to lose all social inhibitors and talked to the screen without using an inside voice.

Last year, I wanted to see the critically acclaimed Lego Movie, so I treated Mom to the full price, big screen showing. I tried to get to the theater early, but we couldn’t find Mom’s glasses, which she assured me had been stolen. We eventually found them behind the bed, which she assured me someone had hidden there. By the time we got to the theater, the seats were almost full, including the back row, so we sat in the cross aisle, which led to an interesting evening. As the movie began, Mom let fly her unequivocal assessment, “This is horrible!” She let it be known in no uncertain terms that Lord Business’s behavior was inexcusable. In a loud voice she commentated on how awful for that bully (Lord Business) to hurt so many people.

“Mom, they’re Legos.”lego movie

“They’re hurting.”

“Mom, they’re toys.”

“Terrible.”

“They’ll be okay.”

“I hate this.”

“Hang in there. It has a happy ending.”

She got up to leave, but I still held an invisible tether around her. She instinctively knew not to stray too far from me. She stood up and walked to the end of the row, staring at me with arms crossed. When she saw I was not moving, she came back to her seat in a cross-armed huff. The kids in close proximity received additional entertainment from our dialogue to the abhorrence of a few parents, but I refused to leave.

“You’re not a good person,” said Mom.

“Mom, we paid fourteen bucks for this movie, and I want to see it.  It’s the doggone Lego Movie.”

She was not a happy camper, but to the confusion and consternation of the adults and children around us, she soon turned a 180 and started laughing and clapping at the scenes. Like Glen Campbell’s concerts, with Alzheimer’s and dementia loved ones, we never know what they may do; we never know what they may say.

“Scott, your sister never visits me. Never.”

“Mom, we took you to a movie and went out for ice cream. Rochelle just left. She has spent this whole afternoon with you.”

“What? No!”

“Yes. She just left.”

“Well, it’s about time. She never comes to see me.”

I love the Goodwill and have often taken Mom with me. One of our first visits after I became her legal guardian, she wanted to purchase a blouse that even I could tell would not fit. I told her to put it back. She cried out in a loud voice, “You take my Social Security check from me and won’t let me buy a $4.00 blouse!” The eyes of all in the store bore holes through me. We put the blouse in the cart. I learned my lesson. Now, she walks in front of the cart and puts everything and anything in it, and I walk in back of the cart and take everything and anything out of it. Since she can’t remember from one second to the next what’s in the cart, everyone’s happy…except when they’re not. A few years ago, Cora and I took Mom to the Goodwill to browse for Christmas possibilities. In the checkout line, Grandma Mills grew impatient with our waiting and unloaded a salvo of cuss bombs that blew up all over the store. And not just one, but the bombs kept dropping. Explosions and carnage everywhere. Boom! Bam! Merry Christmas everyone. Cora and I could not tumble with her into the parking lot fast enough, but by this time, we were used to this public possibility and neither one of us could stop laughing.

“What so funny?” said my mom in a much better disposition.

“You’re choice of words, Grandma Mills.”

“Thank you,” she smiled, “glad you like them.”

In the winter, I would take Mom to the Y so she could walk around the indoor track and get some cold weather exercise. She had lost all of her social adeptness, but none of her social judgments. The indoor track had two lanes: one for walkers and one for joggers. As people passed us, Mom expressed her immediate observations at above normal decibels. The following were a few of her words verbatim:

“She’s a young pup.” (Pause.) “A fat, young pup.”Parkview YMCA

“Holy mackerel, Andy! She’s half dressed.”

“Wow. He’s a big one. Scott, look how fat he is,” pointing at a gentleman who just passed us and was still only a few feet away.

“Whoa, Nelly. Get a load of that one! Do you see what I see?” She chuckled and pointed. If the person looked back, she would continue to point as if to say, “Yes, you honey.”

And since Mom has dementia and forgets immediately, when these people walked or jogged passed us again, she was seeing them for the first time and treated them to another verbal barrage.

We also walked on the outdoor YMCA 1½ mile trail, where people could jog or bike in either direction, and as a few attractive ladies walked or jogged toward us, more than once, Mom put her hand on my shoulder and said, “Hey Scott, there’s one for you. Hubba hubba.”

One time she put both hands on my shoulders as if to hold me back and said, “Whoa. Down boy,” panting like a dog with a Cheshire cat smile.

Awkward.

Of course, I would tell her to keep her voice down or not to make such inappropriate comments or gestures, and she would say with sincerity, “Oh, okay, sorry.” But twenty seconds or twenty feet later, she would forget and take off again.

Mom’s ability to articulate her words has diminished and these humorous, but uncomfortable scenarios are no longer a concern. Now, the awkwardness is she will speak to someone and end her sentences in gibberish. They will smile, and I will smile and finish what she may be trying to say. Despite the stares and inelegant situations, I’m glad Mom continues to enjoy walks and movies and ice cream and activities. I suppose it’s the whole quality of life thing, which is another reason why I admire what Glen Campbell’s family did arranging his Goodbye tour. In the documentary, one doctor stated that Glen continued to do better than expected cognitively because his family kept him active.

Regardless of how the critics respond to the Glen Campbell… I’ll be Me documentary, I’m a fan. I respect the true grit of his children and wife. Instead of quarantining him to guard his reputation as a singer, songwriter, musician and entertainer, they amplify his legacy by giving people a glimpse at the unpredictable and rough rode for those who travel with this disease. His kids give their dad one last ride into the sunset. They raise awareness for this slow raging illness, which if we live long enough, many will have to face. For those of us already on this journey and not close to being famous, we can feel a kindred spirit as fellow travelers with the Campbell family. I say, “Well done.  Thanks.”

 

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Departures

I grasped Mom’s bike to keep her from falling and realized the end of our riding days drew near. We shared a tandem until that too became too difficult for her. We still had plenty to do: Foster Park walks, movie shows, YouTube dances, YMCA workouts, and Dairy Queen runs—“The day I don’t like chocolate is the day I’m dead.”

With Mom’s Frontal Lobe Dementia, one major difficulty that requires Einsteinian brilliance and biblical wisdom has always been departures. Taking her back to the memory care facility and/or attempting to exit the building without her amplifying into volatility. “You aren’t going to leave me in this prison? How could you! I’m going with you. Take me home!” She can no longer articulate with this kind of language, but dropping her off or simply leaving her after a visit still necessitates the black-ops creativity of a Mission Impossible movie.

After my sister and I take Mom out, returning to the residency, we formulate tactics to navigate good-byes. I usually go inside with Mom, while Rochelle waits outside with a good magazine. My escape may take up to an hour or longer, but it is much easier to coordinate a peaceful opportunity to leave if I work alone.

Circa first year of journey: Mom, Rochelle and I.

Last summer, returning to the facility, I helped Mom out of the car and said good-bye to my sister, “Thanks for the visit. See you soon. Love you.”

“Scott, hello? We drove here in my car. You don’t have a ride home, my brother. Remember?”

“Yes, Rochelle, I’m acting.”

She broke into laughter, a humorous touch to a delicate scenario.

When Mom lived on the secure, 10th floor of the downtown Holiday Inn, which became an assisted living facility, Cora and I often had to orchestrate our getaways, which led to some Keystone Cop moments as The Kid dashed toward the elevator, and I dove toward the stairs. We crisscrossed in the hallway shouting desperate whispers as to which escape route to take. While this may sound awful to the uninitiated or stringent moralist, after a few hundred visits…better this than leave Mom in an escalating mood that causes no little trouble for the staff left behind to calm her. Mom will forget her granddaughter’s and my visit within a few minutes, but if agitated, she can remain ill-tempered for a woeful, long time.

We learned years ago that visits needed to include a generous amount of exit time, along with thought-through departure strategies and contingency plans.

At a wonderful facility that Mom stayed in for 4 ½ years, they had an original, working jukebox.   We sang and danced to great tunes through the years. Fats Domino’s “Blueberry Hill,” Elvis Presley’s “Treat Me Nice,” and the Mills Brother’s slow moving “Lazy River” received major playtime among our favorites.

One particular evening, I wanted to get home for a football game. I could watch the game in Mom’s room, but her channel changer vanished—not unusual. Small items such as a remote appear and disappear with regularity in a memory care facility. “Scott, this place is a Den of Thieves!” She snaps while wearing someone else’s necklace that I have never seen before. I could not negotiate a peaceful exit, and her familiar departure escalation began to commence. “You’re not leaving me!” In desperation, I pulled her into the residency lounge with the big screen TV, so I could watch the big game. But without my knowledge or consent, the facility had moved the jukebox from the Dining Room into the lounge area. When Mom saw it, she wanted to dance.

The moon stood still
On Blueberry Hill
And lingered until
My dream…

…of watching football dashed on the rocks of frustration. Albeit, grandiosely irritated, I swung Mom around the dance floor to the Andrew Sister’s “Boogie Woogie Bugle Boy” and a cornucopia of Oldies. Perhaps, with a mother’s intuition, she sensed my annoyance. Out of the blue, at an unexpected moment, Mom looked right at me and said, “Scott, you will remember this someday and be glad that you spent this time with me.”

Bam. She could have hit me upside the head with her fist (which has happened, but that’s another story). I stood there blinking like the Grinch on Mount Crumpit, after he hears the Who’s down in Whoville singing and finally gets it.

“Love is patient.”

Caregiving continues to teach me this.

The only person who can still tempt me to cuss and cuss a lot…is my mother. In the words of a Vince Vaughn character, “Mom! We’re on high alert here! … You do not even realize!” And yet, these moments in the twilight years of struggle, I would not trade.

I knew the big football game would fade from my memory, but I have not forgotten her words. At the Final Departure, she’ll be right; I will be glad we spent a little extra time together dancing.

The best departures are like the one that happened on Mom’s birthday last March. Still too cold to venture outside, we walked around the facility, where she knew no stranger. She greeted all with “Love you, honey,” and I attempted to follow her example.

“Beautiful baby,” I said to the lady sitting in the hallway as she stroked the furry ears of the Easter rabbit in her arms.

“Thank you,” she replied with a smile.

After our birthday stroll, Mom and I spent the next couple hours with the laptop watching Flash Mobs, snippets of Bob Hope Specials, and a mix of sing-alongs with Perry Como, Tony Bennett, Dinah Shore and Doris Day. I stayed until she tired out, which to be honest, required the patience that other responsibilities won’t always allow. After singing most of the musical numbers to Singing in the Rain, she was ready for bed. I tucked her into the covers the way she used to do for me. We said our prayers like we did as a family those many years ago. She can still recite, with a little help, the “Our Father” and “Now I Lay Me Down to Sleep.” Afterwards, I hugged her and returned to her the goodnight kiss that she gave to me fifty years ago.

“What do I do now?”

“You go to sleep, Mom.”

“Oh. Okay. Love you.”

“Love you, too.”

 

 

on departing

throwing our bikes
on the car rack
she says to me

where do I live

we start for home
stare at the road
sun going down

you’ll be fine Mom

placing her hand
on my shoulder
she starts to cry

I know we will

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In These Steps

At my 30th high school reunion, our schmoozing turned toward parental caregiving when a half dozen of us somehow discovered in casual conversation that we had parents in various stages of Alzheimer’s or dementia. We gathered around a table to talk. Mom and I were just a year into her Frontal Lobe Dementia journey. My former teenage friends and I shared stories about our experiences thus far. The anecdotes brought laughter, and perhaps, if we had more time to lower our guards, a few tears. For one classmate, the journey with her father, whom I remember well, was over.   We shared this season of our lives. We had all switched places: we had become the parents to our parents.

Ironically, our Class of ’78 Reunion happened at the downtown Holiday Inn ballroom, which has since become a senior care facility where my mom resided for a year, until she had to leave, never to return, via ambulance for volatility complications—taking one too many swings.

Mom reminds me of Longfellow’s poem, “There was a Little Girl.”

When she was good, she was very, very good.

I recently took her to Taco Bell, and the teenager behind the counter smiled when Mom said, “Hi Sweety. Love you.” The same girl came out to clean the tables as we ate, and again Mom said, “Hi Sweety. Love you.” This young lady may have understood something amiss here, but Mom’s motherliness touched a heartstring, causing the girl to linger around us. When Mom is good, she is very good.

And when she was bad, she was horrid.

Or more like a holy-carp-never-seen-that-kind-of-explosive-in-your-face-volatile-rage.

At our last visit to the YMCA, she sat on an exercise bench as I pumped iron and moved metal. A tattooed, buff don’t-mess-with-me weightlifter came over and asked her if he could use the bench she sat upon.

“No.”

He paused, unsure how to proceed.

“You can leave now,” she said.

The flat tone in her voice surprised him. He hesitated for a second, maybe debating whether to “step up,” but seeing the violence in her stare and death in her eyes, he scurried off to another area of the facility. Good decision. He got away unscathed. When Mom escalates, her sound and fury remains a life event for the uninitiated. I’ve seen mothers, literally, sweep up their children and run, when Mom erupted in a public place.

In 2006, Mom’s condition started to become apparent when she took a swing at the police officer who pulled her over and had the audacity to question her driving skills. After another tumultuous year of living on her own, the time came, for safety reasons, to place her in a memory care residence. And for the safety of others, she had to be removed from two of these facilities due to volatility issues.

Last fall, the resident coordinator at Mom’s present, long-term care facility said her sleep patterns had turned upside down. Mom slept all day and walked the halls at night, which wouldn’t be too bad, except she wandered into the other rooms and woke up more than a few memory care residents, and they had frequent midnight parties with an occasional slap fight.

I discussed the possibility of taking Mom to her morning dentist appointment and keeping her up all day to correct the nightlife. The coordinator agreed to give this strategy a try.

Taking Mom to the dentist is no simple feat. She may grab the tooling. She may push a button or flip a switch out of curiosity. She may refuse to sit in the chair. She may take a swing. She may start talking while the drill is in her mouth. I remain at her side for the protection of all.

This dentist appointment went well; no code blue, red or yellow incidents to report. Caregivers give thanks for docility. We spent the rest of the day working in the yard. As a kid, I never knew the difference between weeds and non-weeds, so I followed in my mother’s footsteps navigating through the huge garden we had in the country house. All has changed.

“Mom, don’t put the rake in the yard bag.”

“No?”

“No.”

“Okay. Suit yourself.”

Repeat this with the shovel, hedge clippers, and various field work equipment. I didn’t solve the disappearance of my new, garden gloves until too late. They lay hidden somewhere in a dozen yard bags, and after considering the cost/benefit analysis, I decided against a search.

We had a good day raking leaves, pulling weeds, and bagging clippings. She has regressed to a limited vocabulary, which the doctors said would happen. Never at a loss for words, she gets frustrated trying to articulate what she wants to say, so I finish her sentences or just go with the flow as she makes up words. We hold conversations that would make no sense to the casual observer, but I run in tandem with her efforts and give responses that assuage her.

“I think so too, Mom…sounds good to me…yes, I like that…you got that right, Mom.”

As this particular fall day unfolded, and we plucked weeds from the flowerbeds, I realized we had passed another milestone. We had crossed another Rubicon. Mom no longer knew my name.

Over the years, in the course of a day spent together, she would periodically forget my identity, which could get a bit awkward when she mistook me for a date. I couldn’t say, “Hi, Mom!” or “Yo, Mom,” fast enough, but my name always returned to her. No more. I’m now a familiar safe haven, an old friend that she can’t quite place, a glimpse of the past that continues to fade into the distance, beyond her memory.

Taking a break from our yard work, we went inside for a Pepsi, her drug of choice for half a century. She smiled and stretched out her arms for a hug.

“Love you, Mom.”

“I love you too …”

“I’m Scott. Your favorite child.”

She laughed, but the memory of my name will no longer reboot.

Last month, on her birthday, I brought over the laptop to enjoy our favorite winter activity. We traveled through the 30s, 40s and 50s on Youtube, dancing with Fred Astaire and Ginger Rogers, singing with Perry Como and Pearl Bailey. We often start with “Good Morning” from Singing in the Rain with Gene Kelly, Debbie Reynolds, and Donald O’Conner and see where the road takes us.

As I entered the residency dining room, laptop in hand, Mom had her back turned to me. Curious to see if she could still recognize me, I did not approach, but waited to watch what would happen if she turned around.

She turned; saw me and stretched out both arms, raising her hands toward me with a smile.

At my 30th reunion, I realized in talking with my high school classmates, how many of us may have to travel this road. Perhaps, writing about Mom and my experiences will help me as we draw closer to the journey’s end, and maybe, lend some encouragement and support to others who will follow in these steps.

Eight summers ago, after she finally received the Frontal Lobe Dementia diagnosis and we began traveling down this path, Mom said on one of our frequent River Greenway bike rides, “Scott, what is happening to me?”

“I don’t know, Mom.”

“What am I going to do, Scott?”

“I don’t know, Mom. But whatever happens, we’ll go through it together.”

 

Mom

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