The Dementia Dossier: Throw It Out

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Dad’s personal papers filled filing cabinets and drawers and shelves and box upon box: study notes and drafts of his book Process of Atonement; correspondence; mission papers; journals and memoirs; travel brochures for family vacations; investment and bank statements; tax returns; and much more. As I emptied hanging file folders to shred no-longer-needed papers, I removed the clear plastic label tags and dropped them in an empty desk drawer for later use.  That later use came several days later as I began to create new files for life insurance papers, home and auto insurance papers, pension and health insurance papers, family history records, and others.  But when I pulled open the drawer with the clear tags, I found the drawer empty.  “Mom,” I called out.  “Where are all the file folder tags?”  She looked confused and said nothing.  I retrieved a tag from an active file drawer, and asked her where all the tags I had saved might be, if she knew.  Her confusion turned to embarrassment as she confessed to not knowing what they were so she threw them away.  Why would you do that? I thought.  “Please don’t throw things away just because you don’t know what they are.  Please ask me first.”  She whispered an Okay.  Scraping the dinner dishes into the kitchen trash bin later that day, I found several new clean vacuum filters in the trash.  “Mom.  Why are these new vacuum filters in the garbage can, if you know?”  She had really wanted to clean out the hall closet, she said, [and I hadn’t done it fast enough for her compulsion,] and she didn’t know what they were, she said, so she threw them away, she said.  I told her what they were and put them back in the now-empty closet.

(Image by gugacurado from Pixabay.)

The Dementia Dossier: Listening

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How Can I Really Help the Poor? - Third Hour

Two men from the church came to visit Mom, one a teenager and one recently retired. In addition to the box of Crumbl cookies, they brought their love and interest and supportive smiles.  And Mom gave them each her big bouncy full-bodied hugs, and they laughed, even as I cringed.  I had set holding chairs out for them, in front of Mom and her recliner, and I listened from the kitchen, wanting Mom to have their full attention.  Stewart and Brendan had come just a few days before Dad passed away, and here they came again to minister to Mom with words of comfort and love (and with cookies).  The subject of death has been tender and frequently on our minds.  Mom asked about Stewart’s son who died, long ago, of meningitis at age 10, and Stewart was coming to the crux of the terrible story, about how even in death he had felt profound love and peace and a divine Presence.  As Stewart stopped for a breath, Mom looked at Brendan and asked him about his favorite subject in school.  The sudden change of subject, at such a dramatic and touching moment, left me feeling jarred.  What mental mechanism of Mom’s caused that? I wondered.  I know she loves and cares about people.  I wondered if she even heard the story, or felt the emotion in it, or if she just couldn’t focus on one subject or story line for long, no matter how poignant.  Steward took the jolt in stride, understanding and not judging, loving her notwithstanding.  Still, as I escorted the men out through the front door, I made a point of thanking Stewart for sharing his story, and of standing with him for a moment in his resurgent pain.

(Photo from Pinterest, used under Fair Use.)

The Dementia Dossier: Just Lazy

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Plantation blinds allow abundant natural light in Mom’s living area.  But after dark she feels exposed, and turns the wood slats to the shut position.  I’m sure the only voyeurs are mule deer, but I understand and agree with her desire for privacy, and her caution.  When I brought Mom’s dinner to her in her recliner one night, she said, “Close the blinds behind me, will you, dear?”  She has a wooden yard stick for precisely the purpose of pushing the slats closed, but using it requires her to stand up from her position of supine comfort.  “Well, that’s your job, Mom,” I reacted, perhaps a little too abruptly.  I have encouraged her to keep up her strength and independence by doing as much for herself as she can.  “Oh, alright, dear,” she responded with a tinge of chagrin.  “I’m just being lazy.”  All the more reason for me not to have immediately acquiesced.  The next day, when I came home from work and sat down, she said, “Get the mail for me, will you, dear?”  The mailman hadn’t come when she went out for the New York Times.  I reminded her that her walk to the mailbox is pretty much her only exercise, and I was sure she could get the mail, there being no snow or ice or rain.  “Oh, alright, dear,” again the subtle rebuke.  “I’m just being lazy.”  And on a Friday morning that I worked from home, she called to me in the kitchen, “Get the newspaper for me, will you, dear?”  I stared hard at her and did not speak.  “Normally I would get it, but you’re here,” she explained.  Precisely, I thought piously through my stare: This is something you can do.  “Oh, alright, dear.  Never mind.  I’ll get it.  I’m just being lazy.”  I am not about to be put to work in compensation for another’s laziness.  But I suspect the issue isn’t so much laziness as it is the comfort of being helped and cared for and even pampered when one is 85 and always tired and life is lonely and every chore seems to take so much energy.

The Dementia Dossier: Smacking

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Mom has never been one to chew with her mouth open, and she certainly taught me as a little boy the same principle of social and eating etiquette. But she must love, or be absolutely oblivious to, the crunching smacking sounds of certain foods.  Her routine breakfast includes a bowl of dry honey nut Cheerios with milk on the side in a glass.  With each fingers-full of Cheerios, the first five quick delighted chews are with the lips parted and the full crunching reverberating through the downstairs.  At least that how it seems to me.  After breakfast comes the Mentos Pure Fresh peppermint gum, chewed with wet delighted smacks.  Over the course of months, I have spent hours composing messages of gentle and not-so-gentle confrontation.  Could you please chew with your mouth closed?!  An obviously rude question destined for failure and offense.  Your chewing is pretty loud.  Still too direct.   The right message and the right delivery are important to an old person whose dementia takes the form of anxiety and sweetness and deference and wanting always to be good.  The casual candor I might otherwise employ could really hurt my mother’s fragile feelings.  Finally, I landed upon the perfectly balanced approach, I thought, with the benign observation, I can tell you’re really enjoying your gum.  She looked slightly embarrassed, but not ashamed or belittled, and responded that she was, she guessed, and that she was chewing a little loud, she guessed, and she would try to remember not to smack.  I’m sure she had not noticed her crunching and smacking before, other than within her own skull, because she hasn’t been able to hear life’s smaller sounds.  With her new hearing aids, she likely will be more aware.

The Dementia Dossier: Egg Salad

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Mom has refused to wear the hearing aids she bought three years ago, because the piece that sits behind the ear conflicts with her glasses frame.  My siblings and I have begged and remonstrated with her—we have tired of shouting, and of the 5:30 news driving us from the downstairs—but she just turns red in the face and won’t talk.  She was open, however, to the idea of new and better hearing aids.  Surprisingly, Dad’s medical insurance paid a nice benefit, and she ordered hearing aids that sit entirely within the ear.  “Look at the pretty clouds,” she said.  “Look at all the airplanes!  I can’t believe all the airplanes.”  We finished our errands early, and she insisted on going to the audiologist office an hour early.  “We can sit and wait.”  And I insisted I was too hungry and we had plenty of time for lunch before her appointment.  (I wasn’t going to sit and wait for an hour.)  She relented and tried to suppress her anxiety.  I asked her what sounded good for lunch.  “An egg salad sandwich,” she replied.  “I like egg salad.”  I raised my eyebrows at her, and wanted to remark, You’ve never asked for egg salad before!  Where do you think we’re going to find egg salad around here?  I was thinking of a hamburger.  We opted for a little Vietnamese place next to the audiologist, and wouldn’t you know it, they served an egg sandwich.  Mom loved it.

The Dementia Dossier: Lights Blazing

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Arriving downstairs at 9:00 a.m., Mom turns on the front foyer chandelier then hand surfs the walls on her way to her chair, switching on every ceiling light and desk lamp as she goes. It is as if she finds herself in a long dark hallway, flipping on lights a section at a time as she goes so that she can find her way to the next section and eventually her destination.  She seems oblivious to the unseen lights left on behind her—they have served their purpose and now simply to not exist in her consciousness.  Eventually her surfing surface ends and she settles heavily in her rocking recliner, encompassed by five burning desk lamps and 25 blazing recessed spot lights.  The brightness screams at me but seems to soothe her.  I much prefer the softness of natural window light, which we have in abundance, and enjoy shadow over direct beam.  On the days I am home, I routinely turn each light off as I follow her throughout the house (except those light she needs in her immediate vicinity).  Watching television becomes painful to my tired eyes as the room’s intense glare hits me from many directions and reflects off the dim screen.  Some days I just cannot endure the light, and inform Mom I need to turn some lights off and dim others down.  She relents.  I have urged her to turn the lights off in the unoccupied rooms, to save on the pricey power bill, and to practice a bit of conservation.  (We are recyclers, after all.)  But it is her house, and she pays the power bill.  One hallway lamp in particular I turn off as I pass by and she turns on as she passes by, and back and forth.  I quickly tire of the power struggle and let her win the game.  The light, she says, helps her see her needlepoint work.  And the brightness seems to help her feel cheery and less alone.  The brightness provides some physical compensation for the emotional isolation which is her new daily routine.  Just shy of 10:00 p.m., she reverses her routine, turning nobs and flipping off switches as she makes her nighttime circuit toward the chair lift and the upstairs and sleeping in the dark, buried head to toe under her blankets.

The Dementia Dossier: Running and Jumping

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No matter how miserable Dad felt in life, his answer to the question How are you? was always “Marvelously well, thank you.”  Always.  He might change his tone, moving from enthusiastic to tired to silly.  But he was always “marvelously well.”  Now it is Mom’s turn to answer all the retired older ladies at church when they put their arm around her shoulder and squeeze and ask How are you?  She begins with a simple, “I’m fine.”  But then she explains how she is not sad, that she is happy, because when she pictures her husband of 62 years in the afterlife, “I can see him running and jumping!” she says.  Always running and jumping, and not alone either, but with my ebullient sister Sarah, and with his beloved sister Louise, and with his tender grandmother Natalia.  They are all running and jumping.  In the afterlife, apparently, people do a lot of running and jumping and who knows what else.  And who am I to say that all the good souls in the afterlife aren’t running and jumping and rolling down green grassy hills?  It is possible that Mom is simply willing herself to be cheerful and to think hopeful happy thoughts.  Maybe Mom can’t tolerate the sadness and loneliness and is casting about for some glimmer to grasp.  But perhaps she really believes it, that her husband is no longer old and sick and paralyzed, that her sweetheart is running and jumping his way to heaven, a now young and vibrant and carefree soul (though after 3½ years of caring for my old and sick and paralyzed father, I have a hard time envisioning his frolicking).  But why can’t a frolicking afterlife be true?  And why not believe it even if she can’t yet fully know?  The very thought of her Nelson running and jumping uninhibited in heaven makes her happy, and what’s wrong with that?

 

Image by Pexels from Pixabay

The Dementia Dossier: The Calendar

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Mom’s weekly hand-drawn poster-sized calendar is taped to the pantry door. I have learned to take quick initiative each Sunday evening to write my commitments on her calendar in order to avoid her gentle badgering to write my commitments on her calendar.  She is smart to keep this calendar, because my explanations of events and dates and times quickly confuse and overwhelm her.  As I wrote on this week’s calendar, she called from her recliner, “What did you put on the calendar?”  I wanted to answer, What’s the point of me writing on the calendar if you’re just going to ask me what’s on the calendar? Why don’t you come and take a look for yourself at your calendar?  She persists: “What did you write in green?”  I opened the pantry door to show her, but she cannot read her poster from that far away.  I sighed.  “Tomorrow.    7:00 p.m.  Planning Commission meeting.”  That’s tomorrow?  Wednesday?  “Yes, Mom.”  And the next night is the police department awards banquet, so I’ll be home late two days in a row.  That one is written in fuchsia.  I am slow to understand that her mundane uneventful daily routine means everything to her sense of stability and calm.  Disruptions in daily the routine destabilize and frighten her.  Add to this her loneliness.  “I’m sad you’ll be gone,” she laments.  “I will miss you.”  And this time I actually do verbalize to her how inadequate a roommate I am for her, and how sometimes she becomes so clingy that I want to pull away.  “I’m sorry, dear,” she whispers, defeated.  Not only have I disrupted her routine with my green and pink events, but I have made her feel small and ashamed in her loneliness.  She needs a better roommate.

The Dementia Dossier: Toss It

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Mom and I remain proud co-recyclers, filling our kitchen recycling bin with cans and bottles and newspapers, and emptying the bin into the two giant green street cans sitting in the garage.  Stepping down the two stairs into the garage is getting harder for Mom, even with the railing and grab bar.  Instead of carrying a 12-pack Coke Zero box to the green cans, or a shoe box, or a cereal box (which don’t fit well in the kitchen bin), she merely throws the box toward the green cans, where the boxes sit on the garage floor waiting for someone—I can’t imagine who—to pick up.  “Mom,” I remonstrated, “just put the box on the kitchen counter, and I’ll take it out.  Don’t just toss it into the garage.”  She apologized sheepishly, explaining that she just “got lazy.”  I do acknowledge the sheer carefree liberation of tossing a box toward the can, released from the effort and duty of depositing the box in the can, and the moral certainly that someone will place the box in its proper place for street curb pickup and saving the rainforest.

 

Image by Clker-Free-Vector-Images from Pixabay

The Dementia Dossier: Introduction

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Many of you followed Courage at Twilight as I recounted my experience living with dying parents.  With this page, I am launching a new exploration.  As my father’s mental abilities diminished, I naturally attributed the loss to senility, or more broadly and accurately, to dementia.  He read for hours and hours a day until the final week, and he still comprehended and remembered more than I do when I read the same books.  But his ability to comprehend, synthesize, apply, and remember the information began to suffer.  The decline was mostly masked by his great intellect, but gradually became more noticeable.  Where nine years ago he easily followed Word’s “accept” and “reject” functions while reviewing my suggested edits to his book Process of Atonement, in his last year he could not manage the power button, mute button, or any other button on the television remote.  Alone with Mom now, I am observing on a daily basis her decline in mental function, short-term and long-term memory, and the ability to process new information and work through new problems.  And I am pondering the spectrum of mental normalcy.  I am well-known at work for remembering the details of 30-year-old incidents, but I notice my own mid-term memory fading, like forgetting that the City Council increased its golf course fees six months ago (I wrote the fee resolution).  I am wondering: where does sanity end and senility begin?  But that is the wrong question, presupposing that senility is the loss of sanity.  It isn’t.  Senility is the loss of memory.  And don’t we all experience memory loss for once-remembered people, places, dates, and occasions?  So, by becoming more forgetful, am I, myself, drifting into dementia?  Where does dementia begin?  On what date is my memory and cognitive function loss sufficient to say, “That’s when my dementia began”?  I doubt such a date can be determined.  But episodes characterizing dementia can be humorous, sad, or maddening (etc.), or all combined.  In these posts I will record my mother’s little oddities, pointing together toward dementia and decline.  I mean no disrespect in finding an aspect of humor in her decline.  But humor often derives from the little human oddities of life, whether happy or sad.  I am merely observing, and trying to make sense, again, of the ending of life.  Each post here will be much shorter than this one—I promise—and will relate a small vignette illustrating the nature of inevitable human decline.  I love and respect my mother—and she also drives me batty!  Hopefully these entries will make you smile at, and ponder on, those we love whose earthly lives are winding down.  I look forward to continuing my journey through life with you.

Courage at Twilight: The After Words (Forgiveness)

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My final (and 500th) entry in Courage at Twilight touches on forgiveness, which I hold to be the most powerful transformative life force in the universe.  As awesome as are the creative cosmological forces of nature, like black holes and supernovae and spiraling galaxies and evolution, the force of forgiveness is what exalts the human soul, both in the giving and in the receiving.  Living 1,262 days with caregiving and hospice provided ample opportunities for hurt and misunderstanding all around, and hence for forgiveness.  My siblings have been extraordinarily kind and forgiving as I have cared sincerely but imperfectly for their beloved father and mother.  They love and accept me even in the midst of my missteps.  They forgive.  My mother forgives me when I lose patience with her deafness and confusion, seeing me always as her darling boy.  In my father’s new life sphere, he understands me fully and pierces the mists of my depression and fear: he forgives me all my trespasses.  For you to whom I have been insensitive and for whom I have not been fully present in love, I desire your forgiveness.  This life is not designed for perfection, but for struggle and growth.  In any event, perfection I cannot do.  But I can do the work of life, and I will, forgiving myself along the way.

(Pictured: flower meadow beneath Mount Timponogos, Utah, a favorite hike of Dad’s and of his children and grandchildren.)

Courage at Twilight: The After Words (Privilege)

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For every day of this caregiving experience, I have been conscious of the blessings, the resources, the benefits, the privileges that shaped and enabled the experience.  By “privileged” I simply mean to indicate our relative place on that vast spectrum of personal resources, our being somewhere in the in-between of those with tragically few resources and those with unnecessarily huge resources.  My caregiving experience, and my father’s and mother’s experience as the cared-for, undeniable was shaped and even determined by our relative resources.  My father’s pension allowed us to hire private-pay home health care and hospice, which sent aides for two hours a day, seven days a week, including holidays, for the last two years (about $30,000 per year).  To be sure, the costs ate away steadily at my parents’ savings, but the fact remains that they had savings, whereas many do not.  Not having this resource would have made my caregiving experience impossible, at least for me.  Add to our privileges the ability to purchase a $14,000 chair lift for the staircase.  While the lift was a major hit to our budget, we had the budget.  Add the blessings of medical insurance, prescription insurance, and social security.  Include the allowance I was given to work a flexible work schedule, which enabled me to cook healthy from-scratch meals from fresh ingredients.  While I am only a small-town government lawyer, my professional knowledge and social clout did clear obstacles others struggle to break through.  Our relative privileges do nothing to reduce the legitimacy or reality of my experience and my story.  But they do shape that story.  A lack of these resources would have dramatically altered the experience, and dramatically multiplied the stress and trauma, and I acknowledge the difficulties faced by persons with fewer resources.  I am not a community organizer, and offer no social solutions, but I am aware of some of the challenges and struggles faced by many.  It may be a cop out to say I would not have been up to the task without our resources, but I fear I would not have been up to the task.

(Pictured: funeral planter from the Tooele City Mayor and City Council.)

Courage at Twilight: The After Words (Grief)

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Three years ago, the thought of my father’s death terrified me.  Today, his death seems natural and necessary.  I feel no grief, only weariness, the fatigue of daily trauma settling deeply in, the after-crisis drain.  The desire to sleep and sleep and never wake up.  I have studied grief, and taught grief, and workshopped grief.  I have grieved my father’s dying for the three-and-a-half years before his death: an anticipatory grief; a preparatory grief; a preemptive grief.  Lorry reminded me, however, that the grief will come, in all its aspects, the anger, the regrets, the deadening sadness, the looking around wondering why he is not in his recliner reading the encyclopedia, the wishing we could talk again and the wondering about why our talking was so hard, reminded me that I need to give myself the permission and the space to feel every part of it.  I am not sure such wrenching grief will come.  For now, I am balancing the compassion fatigue and saturation trauma of caregiving against the fact of loss, wanting just to sleep, and finding a sort of macabre triumph in knowing that I stepped into the battle: I responded to every need, every day, for one thousand two hundred sixty-two days, imperfections and weaknesses and all.  And I am deeply grateful for all of you who helped.

(Pictured: a funeral planter from the church choir.)

Courage at Twilight: The After Words (Guilt)

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I feel no guilt in the enormous relief I find in being freed from witnessing and absorbing the accumulated daily traumas of Dad’s last three years of life with paralysis and pain.  My struggle with guilt will settle in, however, as I contemplate my struggles to be happy and cheerful—and failing—in my care responsibilities, in my silences and avoidances, in my angry and impatient outbursts and imperfect sensitivities.  My resentments, certainly, were not Dad’s fault, but rather haunt me as beacons of my own depression and selfishness and lack of resilience.  Still, I am determined to not be sucked into to the vortex of guilt, the shamefaced guilt which will come if I measure my imperfections instead of honor my humanness.  The facts remain that I offered to the endeavor all my energies, gave all my love and found a little more, persisted through the difficulties, and prevailed.  Our objective was for Dad to live and die in his own house, comfortably, happily, well-fed, in good company, with his books, with his wife and sweetheart.  And we did it.  We overcame.  We prevailed.  We protected.  We cared.  We endured.  We loved.  For Dad.  For Mom.  For family.

(Pictured: the funeral boutonniere.)

Courage at Twilight: The After Words (Loneliness)

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We, my brother and sisters and I, navigated a week of days too filled with tasks to feel much grief—writing an obituary that attempted to summarize in two pages the long life of a great man—preparing a funeral program involving dozens of family members—writing a funeral talk I did not want to write—the mortuary checklists—settling affairs of estate—hundreds of texts and emails and messages to and from those who knew and loved him—the trickles and gushes of people through the house—all the standard tasks, which we were determined to perform in an exceptional manner.  Mom will be lonelier now, without her husband and friend of 65 years.  She will not hear him say as she sidles past his hospital bed, “You’re just the most wonderful wife, Lucille.  I love you.  We’ve been married 62 years.  When you walk by, I’ll give you a hug.”  I will not hear him exclaim “Roger!  Welcome home!” and “What a gorgeous dinner, Rog!  I just love steamed vechtables!”  Walking the grocery store aisles, I passed the zero sugar mint patties, the deluxe mixed nuts, the lidocaine foot lotion, the Brussels sprouts (Mom hates them), and no longer put them in the cart.  And, I felt the wrench of good-byes anew when I handed to the thrift store attendant the bags stuffed full of shoes and socks and shirts and sweats and suit coats and hoodies.  But our grinding struggle is over, and Mom will experience her widow’s aloneness with a new measure of calm.  A neighbor asked Mom how she was feeling, and she declared, “I’m so happy for my husband.  He’s not paralyzed or sick anymore.  He can run and jump and play.  He’s with Sarah, and with his mother, his father, his sister Louise, and all the rest.”

Courage at Twilight: Military Honors

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Christine chauffeured us in Larkin’s heated limousine to the cemetery. My brothers and sons and nephews and I grasped the handles as pallbearers and carried the casket to the open grave, stepping to the bagpiper’s I’ll Go Where You Want Me To Go, the last notes croaking to a close in the 19 degree F chill.  I thanked our missionary friend for his touching musical contribution.  The Air Force color guard stood graveside, their long coats, hats, and gloves inadequate for the cold.  From a distance, an airman played a moving Taps on his silver horn.  Two airmen floated an American flag above the casket, and one began to fold the flag in precise, crisp triangular movements, each fold finished with a deft creasing ceremonial swipe of the hand.  Few knew that Dad had served in the U.S. armed forces, for he rarely mentioned his service.  His orders kept him stateside as an interrogator, linguist (Romanian), intelligence officer, and airman second class, serving eight years in the Army and Air Force reserves and the Utah Army National Guard.  Completing the last fold of the flag, and tucking the borders into the folds, an airman knelt in the ice and snow on one knee before Mom, held out to her the folded flag, and whispered solemnly to her, “On behalf of the President of the United States of America, I thank you for your husband’s service to his country, and present to you this American flag.”  The moment for departure came, and we turned to walk away from the icy grave and the casket, covered in the most beautiful multicolored flowers.

Courage at Twilight: Missionary Choir

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How different this funeral from the funeral of our father’s daughter 370 before, a funeral marked by tragedy and despair and anger, the wrongness of it all bound up in rightness of faith and family love.  Now, we basked in the power of our father’s life and legacy, trusting in our convictions about the goodness of this life and reality and betterness of the life to come.  We retold old stories, and told new stories, unknown to most, stories of love and service and faith.  And we wept.  In a powerful funerial moment, Mom called to the front of the chapel all of Dad’s former missionaries from Brazil.  These 30 men and women, all in their early 20s during their missionary service with Dad, now brought their 70-something gray hair and aching knees and backs to the front, and sang Israel, Israel God Is Calling, in parts, in Portuguese: Israel Jesus Te Chama.  My Portuguese-speaking sons and I joined the choir, and we felt the power of love and conviction and camaraderie echo within the chapel walls.

Courage at Twilight: A Long-stemmed Rose

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We all believed it, my mother and sisters and I, that my father clung to his last heartbeats and breaths until Steven could arrive to bid farewell.  We enthusiastically expressed our belief to Steven and to each other.  Whether factual or no, we wanted to believe it; we wanted this mystic affirmation of a narrow sliver of hope in the midst of death.  Indeed, that Steven arrived before his father’s death seemed miraculous, despite the coma and death rattle.  But I soon discerned the unfairness to Steven of this testimony, which required of him wonder and faith in the face of haggard death, which broached the unanswerable question of why our father’s lucidity could not have been prolonged a mere 36 hours to allow a two-way farewell, which raised the painful reality of this last good-bye.  So, I kept my belief, or my wanting to belief, silent, and sought merely to accept the circumstances we were given and to find satisfaction in having done our best with them.  Steven’s trip was planned months before, but he arrived just prior to our father’s passing and left just following the funeral.  After our father’s passing and our family prayer, when our small assemblage felt ready, I called the on-call hospice nurse, Monica, to report the death: Tuesday January 14 at 11:03 p.m.  The official time of death, however, became the time of her certification of death: Wednesday January 15 at 00:26 a.m.  She performed her coroner’s functions, wasted the remaining morphine (mixing with dish detergent and pouring down the sink drain), and called the funeral home.  At about 2 a.m., the mortician rang the doorbell, bowed at the waste, expressed his condolences for our loss, entered the house, crossed the room to our mother, and delivered to her a very-long-stemmed red rose, bowing again and whispering again his condolences, which he repeated at a higher volume after Mom said, “What’s that?”  After speaking comforts, he and his junior associate, dressed in black suits and burgundy bow ties, shrouded our father in white and transferred him to a wheeled gurney, where they enclosed our father’s body in a blue velvet bag with a sturdy brass zipper, and draped the whole with a blue patchwork quilt, a nice touch I did not anticipate but appreciated.  And then they rolled our father’s body away and out the front door and down my wood ramps and into their Larkin van.

Courage at Twilight: I Will Not Let Him Drown

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For two days family members have trickled in to visit with each other and to tell my father they love and admire and appreciate him, and to say good-bye.  Those living farther away video called to do the same.  But my father has been in a coma.  Today he has begun to show the signs of death: a rising core temperature (at times 104 degrees F); cooling extremities; sweating and clamminess; inability to swallow (he has not eaten or drunk for six days); healthy color fading to cadaver gray; producing very little, very dark urine; not registering pain or reacting to any stimuli; gurgling on liquid in his lungs; no bowel movements.  The day was calm and filled with tender expressions, and I imagined he would slip away quietly into death, his body and mind finally shutting down.  The rattling and gurgling in his ragged breathing seemed to worsen.  I learned later this breathing is called the “death rattle.”  Finishing the hundredth phone call of the day, I could hear from across the house a concerning increase in the raggedness of his breathing, and hurried to his side, where I was horrified to find his mouth filled with a thick creamy liquid.  How is he even breathing through all this goo? was my first thought, quickly followed by a frantic He’s going to drown!”  I remembered seeing a rubber bulb used to suck a sick baby’s nose, and ran to retrieve it.  He might be on the verge of death, but he would not meet his death by drowning, not while I was here to do something about it.  Please, God, help me know what to do.  Somehow, my father was managing to convulsively breath despite the liquid, and I set to sucking it out with the bulb, squeezing the contents out onto a sheet.  Please, God, help me to keep him alive until Steven gets here.  Ten panicked squeezes, twenty frantic squeezes, fifty fearful squeezes with the bulb.  My hand began to ache, and the phlegm piled up on the sheet.  His mouth now clear, I called the on-call hospice nurse, who explained the goop was a normal accumulation of mucous in an unconscious person with congestive heart failure who could no longer swallow.  I felt chagrined, that this were so normal, why did a hospice nurse not tell me to watch for it, prepare me to deal with it?  She ordered the delivery of a suction machine.  The motor suction wand helped me remove more mucous, though much of the underwater gurgling lay deeper in his throat where I was afraid to jam the wand.  While he could no longer swallow, he could also no longer gag, and I probed as aggressively as I dared to clear his throat of phlegm.  I did not want to injury him or cause him pain.  My sister Carolyn took over suction duty while I raced to the airport to get my brother Steven, about to arrive from North Carolina on a trip planned months previous.  I apprised him of the condition in which he would see his father, hoping to soften the experience.  He stood over Dad, offering his silent and whispered good-byes.  Carolyn, Steven, and I began to plan the night, resolving on hourly suction shifts.  I would take 11 p.m., midnight, and 1 a.m.; Carolyn would take 2, 3, and 4 a.m.; Steven 5, 6, and 7 a.m.; and I would resume at 8:00.  At 11:01 p.m., as I wrote this entry, pushing one minute past my shift start-time (what harm could one measly minute do?), Carolyn came to my room and whispered that our father’s breathing had changed, had calmed and slowed.  We descended the stairs and found our father not breathing at all.  I cleaned his face of the last thrown-up mucous and felt for breath and stared for a moving chest, but all I saw were slack muscles and a ghostly greening face.  I ran for Steven, and Carolyn ran for Mom, who descended the staircase slowly on the lift in her long white cotton nightgown.  We stood around our father and husband, not quite believing he was gone, his body still hot, his body unmoving, his body covered with a white flannel sheet stenciled with blue sheep.  Peace and tenderness and loss and relief and sadness permeated our own bodies, together with the one last unexpected trauma of preventing his drowning, and we said nothing until I somehow knew I need to say something, not just anything, but something sublime and holy and apropos, so I offered to pray, and I thanked God for this great man, this powerful intellect, this generous heart, thanked God for giving him to us, thanked God for having each other, thanked God for ending my father’s years of daily suffering, thanked God for a family filled with love and devotion for one another.  And we let him go.

Courage at Twilight: What Will the Morning Bring?

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I expected this entry to begin and end with “Dad is dead.”  The night before, I turned off all the lights except for my father’s night light, a small wild-wood lamp made by my son Hyrum, and said good-night to my unconscious father who lay in the lamp’s low glow.  After sunrise, I lay awake in bed with a tired father’s Christmas-like morning mix of anticipation and dread, sneaking down the stairs ahead of the children for one last check on the piles of gifts before the onslaught of squeals and flying paper, in this case ahead of my mother, in this case for one last check on my father, who I anticipated finding cold and dead.  But, again, he defied my expectations of certain life’s end to flicker his eyelids and responded “Hi Rog” to my good-morning greeting.  The vivid yellow urine of yesterday dripped an angry opaque red.  Rosie said the red could be blood from the catheter insertion, but more likely meant failing kidneys.  He drank nothing yesterday, after all.  I swabbed his dry open mouth with a wet sponge-on-a-stick.  I smoothed Vaseline on his flaking lips.  I syringed a small dose of morphine in advance of the CNA roughing him up with rolling and changing and bathing and rubbing.  From the kitchen sink I heard him mumbling, and I hurried back for him to look at me sleepily and exhort me to “Be good, Rog.  Be good.”  I will, father, as if I know to do anything else.  Then I settled in to do what any other normal land-of-the-not-dead person does: I washed last night’s soaking pots and pans, and I set the garbage and recycling cans at the curb.  Mom asked me to pray with her last night, asked me to pray with her every night.  But what she really wanted was to tell me that she wants to stay in the house and not go to an assisted living facility after my father dies.  I told her there was no reason not to stay at home if she were healthy and mobile.  But I told her that I could not be her companion or comforter, that she would mostly be alone.  She liked being alone, she said, doing her simple activities, she said, her needlepointes and word puzzles.  I did not talk with her about what my own life might have in store.  It’s too soon.  The time for that will come, but is not today.

Courage at Twilight: Sweet Moments

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The family starting calling and coming over, and undeniably sweet moments began to surround Dad and to fill the house.  My sister Megan leaned over him, in tears, and gently wiped his cheeks and chin and brow, talking sweetly to him, and he awoke enough for several lucid minutes of whispered conversation as she related old memories of growing up in New Jersey.  When he slipped back into unconsciousness, she summarized to him some of the more interesting stories in the day’s New York Times.  Niece Afton stood by and rubbed his arms for an hour and sang to him his favorite family song, “Sweetheart of the Rockies.”  My son Caleb spoke out with “Love you, Grandpa!” and Dad’s eyes fluttered and he whispered back, “Love you, too.”  Caleb joined his siblings on a Messenger call, and they all took turns saying good-bye, or to wave and cry.  Rosie and Veronica, two CNAs, deftly rolled him over and back in order to install a draw sheet, disposable chucks (pads), and a new brief, and swabbed his mouth with a wet sponge, and installed pillows beneath his calves to keep his heels off the mattress to avoid pressure sores.  My daughter Erin expressed her love and sadness from the other side of planet Earth, and my sister Jeanette and her husband Craig and Dad’s brother Bill called me to tell me they loved me and appreciated my efforts and pledged their support.  Friends Ana and Solange sang Brazilian lullabies to him, and Ana told me how she had the strongest impression when entering the house that Sarah, who died exactly a year before, was there in the house with us, with Dad, along with other loving spirits—Ana could feel their presence so strongly—and how their presence remained until just after the CNAs had finished caring for Dad and Dad had finished crying out in pain as they rolled him to and fro and we had given him more lorazepam and morphine to ease his pain and anxiety and he slipped into soft snores—then Sarah left.  And I told Ana I was glad she could feel such beautiful mystical things and tell me about them because I am both utterly empty and completely saturated and can feel nothing but only flow from one task to the next to the next—there are so many tasks—and in between I can but withdraw into myself and sit curled up in an emotional corner unable and unwilling and unready to feel.  The last person awake in the house, I looked at Dad in the nightlight glow and knew he was dying and would be dead within hours and saw his passing as just another fact among an infinity of sterile facts, like the ripening of the green bananas, like making mashed potatoes and sausages so I had something useful to do, like the glow of the reading lamp and the squeak of the rocking chair, and Megan’s teary eyes, and Mom’s veneer of cheer thinly covering a universe of grief and fear, and the stars shining coldly in the winter sky.

Courage at Twilight: Bedbound

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I had hoped Dad’s mental acuity would return after a solid sleep, if not some of his physical strength. But his first utterances upon waking were incoherent nonsensical sentences, spoken with a thick tongue and loose jaw.  His beloved Gloria came to take care of him, the day being Sunday, and he broke her heart calling her Martha and Ana.  “Nelson, I’m Gloria!” she nearly wept.  He strained to sit up so he could pee, but had a distorted sense of himself and his surroundings, holding the urinal absently in one hand while peeing on the bed and on the floor.  She laid him back on the bed and helped him finish, then stripped and remade the bed around him.  He did not want to wear a brief, but we put one on anyway, explaining that it was necessary because he had no strength to use the urinal or the toilet.  Gloria and I sat at the kitchen table and faced the reality that my father and her Nelson was in serious shape, would be permanently bedbound, and we would need to reevaluate the whole procedure for his care.  He adamantly opposed staying in his hospital bed in the corner of his office, so I slid away his recliner and we rolled him in his hospital bed into the recliner space, comforting him that this way he would be with Lucille and listen to her music and watch her TV programs and eat lunch together just like normal.  I reported to Jessica that Dad’s condition had deteriorated quickly and severely, and that he needed a catheter because he could not manage urination in any manner.  She was shocked at his appearance less than 24 hours after her previous visit.  She observed his incoherence, his exhaustion, his inability to swallow a pill, his breathing and speech and loss of appetite and distorted sense of himself and his surroundings.  “I wonder if he had a heart attack yesterday when I was here,” she said.  Even one day before, convincing him to accept a catheter would have been impossible, whereas today he did not resist or complain, and the bag quickly filled.  Though he awoke for an hour as Gloria bathed him and changed his bedding, he had been confused and incoherent, and, with the catheter in place, he now slipped into an all-day sleep.  We tried to feed him pinches of food, but he could not chew or swallow.  When we gave him his pills, he alternately held them in his hand, dropped them into the cup, and chewed them without water.  We gave him water to wash the pills down, but he aspirated and sputtered and coughed and his breathing gurgled during his hours of sleep.  I asked if he were in pain and he shook his head no.  I asked him other questions but he did not respond.  He ate nothing.  He drank nothing.  He took no medications.  After observing him, Jessica thought he would not survive the day, that he was beginning to transition from life to death.  She suggested I call the family and invite them to say their good-byes.

Courage at Twilight: Almost Comical

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Jessica, the on-call hospice nurse, arrived just in time to see Dad lurch into an episode of unendurable chest and rib pain. His vitals were good, she said, suggesting the episode was not a heart attack, and authorizing me to give four 0.25 ml morphine syringes, plus a 0.5 lorazepam syringe (“they work better together”).  After an hour, the pain suddenly let up, and he settled into a snoring sleep.  He stirred at intervals, waking slightly, but not fully, mumbling gibberish, making incomprehensible nonsensical conversation.  At bedtime, he could not sit up, let alone stand up, and I could see clearly the impossibility of getting him to bed.  But I needed to get him to bed, to confine the mess, the increase his comfort, and mostly because I suspected that once in bed he might never leave bed again alive, and that if I did not get him into bed this night I would not be able to thereafter because of his utter weakness and my insufficient strength.  He struggled to lean forward, but explained with hand motions the mechanics of how he would simply stand up and turn clockwise to sit on the walker seat, his voice strangely thick and dull and slurred, his self-perception skewed and delusional.  How would I get him up and out of his recliner and convey him to bed? I wondered.  I could not fathom how.  Following our routine–we had to try–I hooked an elbow under his good right shoulder (the left side continued to pain him terribly) and carefully lifted, while mom lifted with her hands under his butt—and all we succeeded in doing was scooting him dangerously close to the edge of the seat, within an inch of sliding irretrievably to the floor.  An idea came, and I hurried to executed it.  Phase 1 involved leaning his torso back, lifting his legs, jamming the walker seat against the recliner seat, holding the walker in place with my foot, and dangling his legs across the walker seat.  With a broad, two-handled sling, I sat him up and shimmied him from the chair and onto the walker seat, bumping his butt over a gap.  The maneuver worked, and he sat nicely on the walker seat.  As I held him upright with the sling, Mom and I managed to roll the walker backwards to the hospital bed, which I lowered as far as it would go.  Phase 2 involved leaning his torso back onto the bed, with the sling behind his back and under his arms.  Mom lifted his feet clear of the walker, and I stood on top of the bed leaning over him, my feet sinking deeply into the mattress.  I heaved with my legs and arms—trying not to strain my back—to slide him in six-inch intervals onto the bed, but perpendicular to the bed, then used the same maneuver to turn him parallel and to slide his head toward the headboard.  With each heave, his head slid backward between my feet as I stood over him on the bed.  At any point, this slapstick performance could have gone terribly wrong, with Dad crashing to the floor, with my desiccated spinal discs shattering, with me tumbling off the bed, with only half of his body in bed and half out….  But for the tragedy of Dad’s situation, and maybe in spite of it, any observer would have laughed hysterically at our antics.  Somehow, with just the right forces and angles and frictions and strengths and moves, we succeeded.  I would not want to have to do it again, and now that Dad was correctly installed in his bed, I likely would never have to.  He had cried out in pain throughout, and he eagerly accepted the morphine he had rejected for the previous 13 months, and quickly settled into sleep, a sleep from which he never fully awoke.

(Photo copywrite by Caleb Baker.)

Courage at Twilight: Unspoken Apology

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Before I understood Dad’s pain, he shouted at me as I lifted gently under his left arm to help him stand and turn for bed, and I shouted back at him to not shout at me, making sure to shout louder than he. Lying panting in his bed, he explained the horrible pain he was having in his chest.  Understanding his pain helped me find more compassion and patience, helped reduce my resentment, helped me speak softly and forgivingly, and I thought in the night of the apology I would offer him the next morning.  I’m sorry I shouted at you, Dad.  Can explain something to you?  Just let me get through it, and then you can respond.  I have always felt afraid of you and intimidated by you.  You were always so smart and so strong and so successful, a superstar to so many, and I wanted to be all you are but knew I would never be.  I have always wanted to make you proud, but you never told me you were proud of me.  I have always wanted your love, but you never told me you loved me.  I always felt afraid of your disapproval and disappointment.  And so, I feel destroyed and annihilated when you shout at me or become angry or disappointed with me.  And now, at age 60, I shout back or become defensive, only to stay alive.  Always in my life I have shrunk to be as small as possible, I have shrunk into shame, I have sunk into depression, for I am a man who has depression.  But, I don’t want to die, Dad, and to not die when you are disgusted with me or disappointed with me or angry with me, I fought back.  That’s what is happening.  I’m trying to survive, to stay alive, to not die.  But I can see that you weren’t angry with me last night; you were in severe physical pain, and so I apologize to you for shouting back at you when you shouted at me, because you really weren’t shouting, you were just crying out in pain.  I’m sorry.  But in the morning, I found him too feeble and in pain and ashen-faced and miserable and weakened, and could not bring myself to add to his suffocating burdens.  My apology may have brought understanding, but would have added to his heaviness and suffering.  Instead, I listened to his troubles and called for the hospice nurse to come, on a Sunday, and administered the morphine, and did what I could to safeguard his comfort.

(Pictured: boot hill grave in Peoche NV, the small mining town of my father Nelson’s grandfather Nelson.)

Courage at Twilight: Cracked Ribs?

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Wishing Dad good luck for a good sleep did not work. He awoke with pains that seared and branded and made him cry out when he adjusted in bed, pains that worsened over the next day, pains he hissed ashen-faced that he could not deal with, pains that made him cry out and shout when helping him move to the toilet or to bed.  He thinks he cracked a rib when I used the gate belt after he fell, to bring him his hands and knees, and then up to the toilet seat.  Jessica, the on-call hospice nurse, tells me over the phone to give him a 0.25 ml oral morphine syringe from his E-kit to see if it helps with his pain, and then another syringe if it does not.  I will do that, I say, and I ask her to come to the house anyway, on a Saturday, to hear directly from him what he is experiencing so I do not bear the burden of correct translation.  We could take him to the hospital for an x-ray, but the experience of pain and exhaustion of getting him there and undergoing the procedure would bring no gain: there is no treatment for a cracked rib but weeks of rest and pain management.  I cracked four ribs several years ago in a mountain biking crash, and I well remember the weeks of agonizing searing pain, and how grateful I was for oxycodone, without which I would not have slept, the more so because a week after my wreck I camped for three weeks with 34 boy scouts at the National Jamboree, a trip two years in the making.  So, he will try the morphine.  And he reported that the 0.25 ml dose did dull his pain, but was bitter-tasting, made him drowsy, made his body tingle, and caused some nausea.  But it did dull his pain.  This dosage, or even double, he can safely take for pain every hour, says Jessica.  She will have a fresh supply of morphine sent over, which is much easier to obtain for a patient on hospice than not, she says.  I felt relieved the low dosage helped.  He, too, felt relieved, from the worst of the pain, and was grateful.

(Pictured: Boot Hill grave marker in Peoche NV, the mining town of my father’s grandfather.)

Courage at Twilight: Caregiver Blues

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Despite my instructions, the new hospice nurse revealed to Dad that his gift, and my reporting of the gift, got his old nurse fired.  I called Kourtney and expressed my utter dismay at being put at this new squeezing fulcrum point, this point of carbon-to-diamond pressure, and I demanded (or desperately requested) that she visit Mom and Dad and explain—before I arrived home—to them how the termination was not Dad’s fault, how the nurse accepting the gift violated all federal, state, and company rules and ethics, and especially how the termination was not “Roger’s fault” for having done right to report a wrong, and I needed to arrive home to a place of relative safety instead of a place of shaming accusation and recrimination.  After the hour-long visit, she assured me he understood and was sufficiently calm.  Indeed, I found him calm, yet eager and accusing.  She was fired, Roger, because you reported the gift.  (I.e., you snitched.)  I stiffened myself against shame, a little boy standing up to an angry giant of a man, and immediately interrupted the lie.  “That is not true,” I shot back.  Your nurse was fired because she played on your sympathies and committed a crime, not because I reported the crime.  That the company did not know about its employee accepting an illegal gift does not excuse her and does not condemn me.  But he would not relent, and I would not be shamed, and in my momentary rage I thought, You are not my father.  You are the man who even on his death bed needs to be right and will tell me how I am wrong and how I am at fault even though I do the good and right thing, the hard thing, because it is good and right.  You are the man who belittles his son rather than acknowledging his own shortcomings, instead of thanking his son for his courage and his ethics and his advocacy for truth and right.  And, I am afraid to say, I continued spinning my mental yarn of hurt and justification.  You are the man whom I have always wanted to please but could not, from whose lips I craved but never heard “I love you” and for whom my saying “I love you” feels like chewing glass.  My own fears and frustrations and guilts and inadequacies continued to pour through my thoughts.  You are the man around whom I strapped a gate belt and lifted with all my decrepit might to raise you from the floor and onto your chair and into your bed and who complained about how I had hurt you, instead of thanking me for saving your life, again.  You are the man to whom I wanted to be a beloved son but to whom I instead became a resented caregiver, or a toxic mix of both.  Leaving him to watch Dr. Poll alone, I resolved again never to live with my children in my future decrepitude.

(Pictured: Chicago Ivy #3.)

Courage at Twilight: A Closing Universe

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“In what universe do you think this is sustainable!” I want to scream at him.  Dad is lying naked on the floor, having collapsed on his one-step voyage to the portable potty.  Mom had screamed “I need help with your dad!” from downstairs, and I knew before launching to the rescue that Dad was on the floor.  All I can do is stare grudgingly at him, this man for whom my responsibility is to do the impossible: get him up off the floor and onto the toilet seat.  “In what universe do you think we can keep doing this!” I choke back the words.  Mom begs me to call this neighbor and that neighbor, and I shoot back that if I call anyone it will not be the poor neighbors, but the paramedics.  His walker lies, folded, on the floor across the room to where it rolled, and from it I retrieve the gate belt sewn with four helpful handles.  The first impossible part of the impossible hoisting procedure is to pass the buckle and strap under his chest, and I jam the buckle under him and haul on his shoulder and hip to roll him over enough to pull the strap through and cinch it tight around his slack once-muscled chest and above his now bulging belly.  On the count of three I heave from the handles and Mom lifts and Dad pushes, and we, as a team, we manage to raise him to his hands and knees, upending my predictions.  But there is no resting position for him, only multiple collapsing positions, so we move quickly into the next phase, in which he grasps the potty handles and somehow I lift his bulk enough for him to lift his knees and I wrestle his backside onto the potty seat.  My silent screaming continues, now about how much I hate this experience!  But I do not scream.  I never scream.  I never chastise or berate.  I never shout.  Except that one time he condescended to me for installing a wider bathroom door without his permission on the eve of his return home from the nursing home, and I instantly boiled over from quiet to rage bursting from its cage of lifelong inhibition and I pounded on the kitchen counter and I thought I had broken my hand on the stone kitchen counter, the time Sarah was a living witness, a breathing comfort to me.  And now he is moving his bowels and is bossing Mom to bring him his walker because he can’t, he says, do anything without his walker right in front of him, and the bossiness is a cover for his embarrassment and powerlessness and fear.  “I’m trembling, Rog.  I’m so weak and shaky.”  No shit, I retorted in silent and staring thought, trembling myself.  I muscle him from the potty to the walker and muscle him from the walker to the bed, using hands and arms and knees, maneuvering methodically to leverage every opportunity to inch by inch transfer his bulk to his bed.  The crisis is over, and I announce that I’m going to bed, and I wish him good luck for a good night’s sleep, and I take a sleeping pill.

(Pictured: ivy on my Chicago daughter’s wall.)

Courage at Twilight: I Haven’t Lost My Mind

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Dad asked me to make an entry in his check registry, in which he keeps a scrawled and unnumbered untallied record of his checks. And that is where I discovered the $500 check made out to his dear hospice nurse.  The image of the entry bounced erratically around my brain for hours, seeking but finding no possibility of legitimacy.  I asked Mom and Dad if I could discuss something with them (“Certainly!”), explained about finding the registry entry, and asked what they could tell me anything about it.  Dad offhanded the check as a simple Christmas gift, and turned back to his book.  I pressed him about why this gift in this amount to this person.  “I just thought she needed it,” he demurred, not looking up.  I pressed further: but what did she say that led you to believe she needed money?  He mumbled something about hard times and her husband being out of work, with Christmas coming.  I launched, carefully, into a lecture about his days of monetary magnanimity being over, that his bank balance was low and diminishing, that giving his money away sabotaged my ability to take care of him, that my fiduciary duty to him required me to raise the subject of financial irregularities with him, and that, besides all these, his hospice nurse playing on his sympathies and accepting a gift violated hospice company policies, Medicare hospice licensure rules, and nursing ethics.  What’s more, for a person in a position of trust and confidence (like a hospice nurse) with a vulnerable adult (like him) to obtain that vulnerable adult’s funds (like a $500 check), constitutes the crime of exploitation of a vulnerable adult.  But I asked her if there were any rules that prevented her from accepting a gift, and she said no.  Just a week earlier, Jeanette had warned Dad about another exploitative person who might ask him for money, and he had retorted that he could “recognize a con.”  And yet here he had been conned.  “I haven’t lost my mind,” he insisted to me, but he could see now he had been played, and he felt embarrassed.  “I won’t do that again,” he promised.  He looked to Mom, “We won’t do that again.”  Lying in bed pondering the bizarre situation, I realized I possessed a new power, namely, the power to get the nurse fired: a power I did not want.  We liked this nurse; we trusted her; she is a nice woman and a good nurse; and I did not relish reporting her and causing her pain.  And that is part of the con.  My sympathies were being played, too.  So, I used the power I had been given: I called my contact at the hospice company and reported the occurrence of the gift.  The same afternoon the company director called to tell me the gift had been investigated and confirmed, the nurse had been fired, the nurse would be referred to the Board of Nursing, and the $500 would be reimbursed.  Thank you so much for calling.  Sudden and severe, but not surprising.  I fought to not feel responsible for the devastation just wrought in the life of the nurse and her family, due to my report, urging my brain to believe the truth that these were direct and terrible consequences of her actions, not mine.  But I will not tell Dad that I reported the nurse and that she was fired, because his brain would lose the battle, and he would berate himself for giving the forbidden gift and destroying the gifted.

(Pictured: brick wall, with ivy, surrounding my daughter’s Chicago apartment back patio.)

Courage at Twilight: Nobody Cares

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Ten p.m. The hated hour.  The impossible hour.  The hour of transfer from recliner to walker seat.  The hour of rolling dragging backward to the bedroom.  The hour of transfer to the edge of the bed, to enough of the edge to stay on and scoot farther in, and hopefully enough not to slide off and fall to the floor.  The impossible hated hour.  He doesn’t want me here, Dad doesn’t.  He knows he’s poised on a precipice: “I don’t know if I can do it.”  He knows some unseen stress is getting to me, that I am on edge and irritable, and has no idea it has to do with him.  “Where’s Lucille?” he demanded, looking to her to lift his butt, though she can’t, pretending he doesn’t need me, though he does.  “I won’t do it without Lucille.”  On this night, gripping the armrests to make the impossible effort, he looked up at me in his nakedness and remarked how sixty years ago he was a student in Brazil, and I was a baby, and I dutifully observed in return what a long time ago that was.  But he persisted and began rehearsing to me one of his many mystical stories, this one about being assigned to visit ten families who no longer came to church, ten families who had no phones or cars (neither did he), ten families who lived far from the church building and from each other and from him, families whom he visited every month for the school year he was there, riding buses in the vast internecines of São Paulo, urging them to Christ, inviting them to church, making the last visit as my first birthday neared, and hearing the voice of his Savior assuring him that his offering of service to the ten families had been seen and accepted.  But as he began the old story, looking into my face with the earnestness of someone having something of utter importance to say that had never been said or heard in the long history of the world, I walked away, having absolutely desiccated internal emotional reserves, muttering that I had something in the oven that needed tending, and indeed I did have something in the oven, for the second time, because I had baked the miniature mincemeat pies for the first time on the wrong temperature and now I hoped to salvage them for an office party the next day.  “Never mind,” he said, and he looked up at Mom imploringly: “This is important.  And nobody cares.”  Back from the oven, my own heat rising, I rebutted with how unfair that was to me, and how of course I cared, and how I have heard the story a dozen times and did not need to hear it again, and how I had something in the oven that needed tending, and how I had a lot going on in that moment, and how I was tired and wanted to go to bed.  Another painful barefoot moment on the razor’s edge of being needed but not wanted passed, and I hung back in offering a steadying arm under his armpit until the moment just preceding a would-be fall.  Somehow he made it to the edge of the bed.  “Good-night, Mom and Dad.”  From where I sat in the living room, piecing together the faces of angels and shepherds and sheep, I listening to his gravelly petition to his Heavenly Father, praying for me, praying that I will not be angry, that I will be blessed in my hardships, that He will be with me, totally unaware of the cause of my feelings.  Placing the Jesus piece in the Nativity puzzle, I breathed, “Blessed Jesus, let me not do this to my children.”  Let me leave this planet before this, knowing they will weep for a day and then get on with their joyful challenging bitter hopeful grinding lives, with me a happy memory instead of an angry silence or an endlessly repeating story of a glorious romantic mystical reinvented past.

(Pictured: my own brickwork in an antique-themed writing studio within my old chicken coop.)

Courage at Twilight: I’m Worried

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Mom served Dad his can-of-soup lunch at 2:53 p.m., and he said hopefully that he hoped they didn’t have to watch the last seven minutes of Family Feud. “I don’t care what you want!” she snarled, hoping precisely to watch the last seven minutes of Family Feud.  At the kitchen sink, I turned to look at her in disbelief, raising my shoulders and hands in a What was that? gesture of irritated incomprehension.  None of us said a word, but she had seen me, and turned on Dr. Pol.  I guess she is done being bossed by the boss, the man of the house.  And now she possesses the marvelous power of the TV remote.  That morning, I had driven to a temple of the Church of Jesus Christ of Latter-day Saints, a beautiful edifice, a place apart from the cares and worries of the world, where we dress in the symbolic equality and purity of all-white, and learn about God’s plan for humanity and about our place in the vast universe, our origin and destiny, and we make promises to be good and chaste and generous and faithful to the faith and to the Church and to our God and to each other.  In the temples, we act as proxies for the departed, being baptized on their behalf, and linking them together for eternity (if they wish it) in their mortal family units as couples and as parents and children.  I had come for peace, for inspiration, for answers, for a settling of the spirit.  But sitting in the bright room with chiseled carpets and gold leaf wall accents and gorgeously upholstered chairs and elegant inlaid wood tables and brilliantly colored stained glass and tinkling sparkling crystal chandeliers, sitting and seeking some peace, all I could hear in my head was Dad repeating his ruminations: “I’m worried about…” (insert the name of any one of his two dozen grandchildren, of any one of his dozen CNAs, of any one of his six children, etc.) hour after hour after day after week after month, endless cogitations about endless worries, repeated to me daily, and I let his rueful expression worm into my head and crowd my heart, and I let all the worries follow me into that quiet holy place, unworthy stowaways into the temple, to churn and swirl and tense my neck and back and distract me from the hopeful joyous prayers and promises, and fill me instead with dread and angst.  And when I came home and he began again with “I’m worried about…” I changed the subject, I interrupted, I dodged and demurred, I pretended I had not heard him, and I launched into another subject, a small subject, a brief subject, then made the excuse of having work to do upstairs.

(Pictured: mountain stream in Little Cottonwood Canyon, Utah.)

Courage at Twilight: No Saint

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Janis says to me every week at church, she says: “You are such a blessing to your parents.  They are so lucky to have you.”  And Stephen, whom I respect, and who knows a lot more about caregiving than I will ever know, told me, “You must have the deepest reservoirs of unconditional love.  If you were Catholic, I’d nominate you for sainthood!”  (Wink-face emoji.)  He’d have to call me the Swearing Saint, I muttered.  And my great and good friend Blake: “You are amazing…you are preparing your place in Heaven with how you are treating your parents.”  Heaven, huh?  Hell, more likely.  Or some other type of purging Purgatory.  Where the angry and resentful and rude go to cool off for a few millennia while awaiting the Final Judgment.  I think I will need every one of those years.  “Help me get to the potty, Lucille,” Dad instructed her.  “I can’t!” she cried, at 85, barely able herself to totter about on stiff knees and hips, let alone support and swivel around his belly and buttocks.  “I’m not strong enough!”  Exactly so: you’re going to get her hurt, Dad, make her fall.  And so I wait—sitting at the piano, standing at the sink, cleaning up the kitchen, decorating the Christmas tree, piecing together a Dowdle puzzle, writing this Courage entry—listening for the effort grunt to become the falling-panic help-me I’m-going-down grunt, waiting for “I don’t know if I can do it” as he pivots from the toilet to the chair, a rotation of 45 miserable impossible degrees.  You shouldn’t be here! I want to scream.  But I never scream; I just seethe.  And at church, Janis rejoices, as if for the first time, as if with a novel thought, as if a newsworthy human-interest story, as if I beamed at her pretentious praise: “You are such a blessing!”  Go to hell.  I am no saint.  No way.  I’m just an angry lonely stressed exhausted resentful empty depressed anxious angry 60-year-old man waiting and waiting and waiting for the little event that will inevitably initiate the cascade toward the big end.  And Stephen, rightly, accurately, justifiably, gently encouraged me to try to be less of a caregiver and more of a son.  Point taken.  Touché.  But…I may have lost them both.

(Pictured: Stream in Little Cottonwood Canyon, Utah.)

Courage at Twilight: Television Tyrant

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“Is this asparagus?” Dad called out after I served him his dinner plate. “It tastes like a stick.”  The only words my mind would form were profane, and I clenched my jaw against their audible escape.  Perhaps he was trying to be funny?  Or, perhaps his dementia really is that bad?  The asparagus was very skinny, after all.  But mighty tastily cooked.  After the dinner-time Next Generation rerun, I retrieved the empty dinner plates—all the sticks on his plate were gone—and Mom began surfing the channels.  Oh, the power.  “We could watch ‘Superman’,” he suggested, catching a glimpse of the name on the screen.  “No.” Mom answered simply.  “We could watch ‘Pirates of the Caribbean’,” he ventured again.  “NO!” she hollered.  She was in total control.  He was helpless, defeated, and he knew it.  I fled the kitchen, weary of the too-frequent tyrannical television exchange.  At 10:00 p.m., when I wanted to be in bed, I descended the stairs to the family room, the scene of a terrible nightly struggle.  Dad’s task was simply to stand, to hang onto the walker handles while he turned, and to sit his bare bottom on the towel-covered walker seat.  No steps required.  A good thing, since he has no steps in him to take.  He pushes, and he rocks, and he pushes, and he trembles, and he slowly rises from his recliner, his body bobbing convulsively from arms and legs that will no longer bear his bulk.  His swollen feet shift an inch or two at a time in the 120-degree pivot.  And there it was—I could see it: he was going down, and once he went down there would be nothing I could do but dial 9-1-1 and be up half the night with adrenaline and worry.  So, I pressed a fist into his hip and shoved, and he groaned and slumped precisely into position and exploded angrily, “DON’T PUSH ME!”  I had no patience for the petty power posturing, as if he could have positioned himself.  I recognized that he was reacting to my maneuvering with the only power he had left: the attack.  But I was having none of it.  “DON’T YELL AT ME!” I retorted.  “If it weren’t for me, you’d be on the floor!”  I pulled the walker, Dad’s back toward the direction of travel, to his bedroom, his feet dragging uselessly behind, swollen and deformed.  I will not give him the meager dignity of pushing the walker with him face-forward, not because I am spiteful, but because of his difficulty in inching his feet forward and my difficulty in not running over his hideous toes.  So, I drag him.  And I position him facing the bed for the last agonizing transfer of the day.  “I don’t want any help, because I can do it myself, even though I’m slow.”  Be my guest.  I must be there anyway, just in case, and to spare Mom the labor and worry.  And, somehow, every night, he pivots just enough to land his butt on the edge of the bed, barely.  But I want to scream at him that he shouldn’t be here, at home, scaring everyone and bossing everyone and narrating the news in real time, a delayed echo competing with David Muir at volume 45, and complaining about eating sticks for dinner, and making Mom lift his butt.  But, of course, he should be here: that is the whole purpose in my being here, so that he can be here, until his end.  Though not wanting him to die, that purpose has exhausted me and left me angry and resentful despite my every effort to be the good, dutiful, patient, faithful son.  At the Thanksgiving dinner table two days before, we sang one of our favorite family songs, “Swing Low, Sweet Chariot,” and Dad explained how it was an old slave song, the enslaved Black Americans supplicating God to send his fiery chariot to end their suffering and convey them to a merciful heaven.  We have sung that song since I was a little boy, at home, around the campfire, at reunions.  “One day, soon, that chariot will swing low for me,” he sighed.

 

(Pictured: fall leaves on an arched wooden bridge over a dry creek in Dimple Dell, Sandy, Utah.)

Courage at Twilight: Please Press Mute

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Ebbets Field - Wikipedia

Jackie Robinson joined the Dodgers in 1947, played at the old Ebbets Field, and retired to see his team, Branch Rickie’s team, move with O’Malley to Los Angeles.  The Yankees remained, to dominate.  And in 2024 the two historic New York rivals faced each other, for the 12th time, in baseball’s World Series.  Mom cranked the volume to jet-engine level, and the crowd’s roaring me pained my ears.  Dad began to talk, and I could hear neither him nor the announcer, so I waved for Mom to mute the barrage.  The TV remote has grown old, and certain buttons respond only to forceful fat-finger pressing, not that her fingers, or mine, are fat, but the buttons are so small as to defy precision pressure.  She gives the mute button a focused, two-handed effort, leaning forward and stretching her sweatered arms toward the television: surely the closer the remote is to the appliance, the better the remote will work.  “That pitch was a ball.  It was low, and outside.  And he swung at it, and he missed.”  I nodded dully at this intelligence, already two batters old, and waved for Mom to reengage the decibels.  The mute button shows signs of extreme wear, and, again, she strained to shorten the distance those struggling radio waves had to travel.  It seemed to work.  Dad soon began to comment again, this time on a base hit, adding his indecipherable garbling to the crowd’s screaming, and on an unexpressed pretext I exited to the kitchen, perhaps for ice cream.  At the commercial break, when Mom mercifully mutes the aural chaos, I announce how tired I felt, and that I thought I would go to bed.  It was the top of the ninth inning, in game 5, with the score 6-5.  I still don’t know who won the game, or the series.  Evenings are a bit quiet now.  A bit.

(Photo from Wikipedia, used under the Fair Use Doctrine.)

Courage at Twilight: You Don’t Answer

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Mom came home with a dead turtle. A cleaned and varnished carapace.  Barbara had taken her for an outing to the Native American Trading Post on Redwood Road, a favorite haunt.  I myself have enjoyed browsing there, bringing back southwest-themed pottery, woven wool blankets, and the heavy sense of vast peoples’ loss and pain.  On this particular day, Mom struggled to choose an object of interest, bringing home the turtle shell.  She placed it on the dining room table.  Sarah’s headstone has been ordered, the spot marked by a temporary plaque, and I am still pissed (as in the American angry, not the British drunk).  The stone will be a burgundy marble.  Pissed, and attempting to carry a heavy unwieldly sense of loss and pain.  Guilt compelled me to invite Mom and Dad on a walk, not having done so since Dad collapsed a month ago and lost all ability to walk.  I aided him in his struggle to stand enough to transfer his weight to his walker and then to the seat of his power wheelchair, taking nary a step, his entire mortal energies consumed, burned up, in a hunching stationary pivot.  I threw a towel under his bare bottom and tucked a blanket under every inch of buttocks and legs to shield his nakedness from the wider world.  Now I can boast that my dad took a walk in the nude around the block.  Back at home, he received the driver license division supervisor with his usual cheer.  A DLD letter had arrived advising Dad to appear in person to renew his driver license.  I called the DLD office and explained that Dad did not need to renew his driver license, and could not have come to the office even had he needed a driver license, but that nonetheless he would appreciate an official Utah ID card, and what could they do to help.  The supervisor and a clerk came to the house with their computers and cameras and cords and got the job done.  “Don’t tell anyone,” they enjoined.  “People will take advantage—everyone will want us to come to their house just because they don’t feel like coming in.”  We assured them their secret was safe with us.  That evening, Mom sat by Dad’s hospital bed where he lay, undressed for the hassle of clothing twisting around his torso and obstructing the urinal and generally keeping him uncomfortable and frustrated and awake.  Sleeping naked is simply easier.  They held hands in the glow of Hyrum’s homemade wooden night light as Dad began his long gravelly prayer.  “Dear Father,” he began as usual.  Then my faith-filled mystic of a father surprised me.  I have heard him tell dozens of stories of having heard and felt and seen the voice of his Lord instructing him on whom to bless and how.  Now, he plied his God: “Father, it is strange: You tell us to pray. And You promise to answer.  But You don’t answer.”  He went on a long while, praying anyway for the family’s needs, but I did not stay to listen—what was the point?  This is the day of Dad’s endurance.  Enduring a collapsing body.  Enduring a dementing mind.  Enduring the aloofness of his Invisible Divine.  My own faith urges upon me a mythology of God’s ever-active love and nurturing, a faith that They undergird and protect and teach and strengthen in all moments of endless time, all moments, though Their reality is inscrutable and undiscernible and vague.  Ultimately, I choose to believe They exist and care—infinitely—because the alternative is insuperably sad.    And I do not want to be always pissed off.  The dead turtle watches over us stolidly from the dining room table.

(Pictured: Hyrum’s little wooden lamp named Joia (gem or jewel, in Portuguese), which Dad uses for a night light in his downstairs hospital bed office/bedroom.)

Courage at Twilight: Night Lights and Shadows

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“Help him pull up his pants,” Mom instructed.  I responded that I would help Dad if Dad needed help, but I wasn’t going to stand there waiting for him to need me, standing and waiting for something bad to happen.  “I can’t just stand there waiting to see if he needs me, hovering, waiting, waiting, worrying for the next hard thing to happen.  I can’t do it anymore.  I can’t.”  Twenty minutes later, Dad finally needed help pulling up his pants, and I was there to help.  But I hadn’t hovered and waited and worried and worn myself out over it.  I have to say, I don’t care, which, of course, means I care a great deal, but am weary of the worry of caring.  After three accidents the next day, Dad admitted to me that he might have to start wearing a brief.  The only way he will wear a brief is if the brief idea is his idea.  I don’t bother suggesting.  “Whatever you think you need, Dad.”  So tired, I’m often in bed by 10 p.m., and often wake up at 11 or 12 feeling hungry, or I awaken for no apparent reason.  To get past the master bedroom, I must traverse the light field cast by the outlet night light, sending daddy-long-legs shadows into their room, and as Dad lies in bed rehearsing to Mom the family’s challenges and blessing, he never fails to detect my quick passage, calling out without fail, “There goes Roger down the stairs to get a snack,” and I roll my eyes in the dark.  Some nights I stand at light’s edge, wondering if the snack is worth being discovered and commented on, again.  This morning, Dad rose from bed and strained to stand at his walker, at 8:30, and he immediately collapsed to the floor, too weak to move.  Mom was in the shower.  When she discovered him lying on the floor, she put a blanket over him and waited for an hour for the CNA to arrive.  She phoned no one, not even me—she said Dad would not let her call.  Instead, she sat in her chair watching her husband immobile and paralyzed on the bedroom floor.  At 11 a neighbor texted me, “Hi, my wife mentioned that she saw some activity at your house this morning.”  Some activity?  What the hell did “some activity” mean?  “Some activity” meant an ambulance and a fire truck pulled up to the house with flashing lights.  The paramedics and firefighters—it took five of them—managed to hoist Dad off the floor.  Dad will sleep is his recliner tonight.  He is too weak to get himself to the chair lift.  I have set him up with large absorptive pads underneath him and on the floor, with a urinal, with a portable toilet that he likely is too weak to reach, with blankets, with his feet raised and his body laid back, and with the very real question in his mind of how he will get through the night.  Well, I can’t piss for him, or stand up for him, or walk for him.  I can just give him what he needs, or try to, and respond to whatever happens.

Courage at Twilight: Garden Dreams

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The Facebook event, I found out, showed the wrong address and the wrong map for the tree planting activity. I searched for over an hour, growing furiously upset to an extent unusual even for me and out of proportion to the circumstance.  All my focused mental strength brought me slowly to self-talk and deep breathing and prayer, and the dissipation of rage, and acceptance of the disappointment and failure.  Driving home from being lost, I saw a sign for Sego Lily Gardens, and pulled in.  Decorative rock covered an enormous round buried drinking water reservoir, and the waste strips and corners had been turned by the city into pleasantly meandering paths within groves of pines, and grassy gardens with blooming flowers, and creeping groundcovers.  A downy woodpecker did not mind me standing only three feet beneath his piney perch as he pecked.  This sudden immersion into quiet living beauty counterbalanced my earlier distress, and I felt almost grateful at having gotten lost.  In these gardens, my dreams reawakened, of a pollinator garden buzzing with bees and graced by lilting butterflies, birds singing overhead, flagstone paths winding among tangled native flowers, a bench here and there.  I love the beauty of Dad’s and Mom’s manicured yards and turf lawn, and I work hard to keep them immaculate.  But I yearn for more natural surroundings, unmanicured and authentic, not forced into shape, but emerging from evolution’s own DNA, with some gentle shaping of garden form from me.  A week later I brought Mom to the garden, and pushed her in her wheelchair around the garden paths, twice.  We soaked in this suburban jewel, unknown to us before, touched by it now, feeling for the moment blessed and graced and whole.

Courage at Twilight: Noises in the Night

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Bowing to the carpet—to investigate the yellow streak.  I have come to hate the stench of urine.  I don’t judge or malign the fact of urine—I hold no personal grudge.  Urine is universal.  But I loathe the smell.  And entering the house today, acrid yellow vapors rushed up my nose.  I hurried to mitigate the offensive odor by filling the carpet shampooer with soap and hot water and getting to work.  The shampooer stands ready in its convenient corner for tomorrow’s use, for I will need it tomorrow, and the next day, etc.  Noises, too, are triggering panicky heart beats and sweats.  The squeals of school children running to the bus stop seem the screams of my mother in distress.  The “thunk” of Mom’s magnetic shower door becomes the thud of my father falling.  This morning’s Tchaikovsky bass drum booming might be, I wondered weirdly, Mom’s grief reaction to finding Dad dead in his recliner.  Getting Dad situated in his new hospital bed, I felt zero confidence he could navigate the urinal in the night.  I keep my bedroom door open at night now, listening for sounds I hope not to hear, lying awake in the quiet.

Courage at Twilight: A Heel and A Moron

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Mom startled me with a sharp rap-rap on the door of my home office, where I sat focused on my laptop screen, lost in classic rock. She cried and squeaked out her Sunday afternoon plea for me to push her for a walk around the block.  I detest being started, and reacted involuntarily harshly.  “I don’t think it will rain,” she hoped.  Thunderclouds thickened and lighting sheeted over the neighborhood—and the rain began to fall.  With each passing car, I thought, They must think I’m such a moron for taking my parents in their wheelchairs in the rain.  But we actually loved the gentle shower.  Mom tilted her head back and spread her arms wide to the sky.  All three of us wondered if I would be struck by lightning.  In the moment, I didn’t care.  Returning home, I saw that the porch lights were on, three hours before sundown.  With such irritation, I have been snapping the porch lights off, for months.  Why does she turn the lights on so early every day, I finally asked her.  “I turn them on for you, to welcome you home from work.”  Finally I saw the early-afternoon porch lights for what they were: a mother’s welcome home to her little boy who has been away all day.  I such a heel, I thought.  A moron and a heel.  Before situating Dad back into his recliner, I studied the multicompartmentalized cushion he sits on, designed to avoid pressure sores.  The cushion had flattened over the months.  Mom watched me intently as I tried and failed to use the tire pump, the bike pump, and the ball pump, struggling to inflate the cushion.  The stem closed with clockwise turn, but by the time I quickly closed the stem, the cushion had lost all my hard-blown air.  I sat on a stool with the stem between my teeth, still blowing, and spinning the cushion around to close the stem.    “Thanks for doing that, Roger.  I have a pressure sore on my butt, and a full cushion should help.”

Courage at Twilight: Family Reunion

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Dad’s brothers and sister decided to host a family reunion, the first in perhaps 20 years. I barely had energy to show up for the event.  But I love my Baker-Formisano aunts and uncles: Bill, Louise (deceased), Howard, and Helene.  I warmed to the occasion, happy to see my cousins and their families after so many years.  One cousin I once knew well approached me and hesitated, “Now…you’re….”  In fairness to him, I had a full head of hair the last time he saw me.  When it came Dad’s turn to speak to the assembled hundred family members, I winced at the incoherent story-ramble that might emerge.  Perhaps that was unfair of me, because he delivered a string of delightful stories about his direct ancestors, starting with Niels Bertelsen.  Niels was a Danish fisherman who converted to our Church in the 1850s, a scant two decades after its founding in Palmyra, New York.  The Bertelsens had no money to emigrate as a family, so Niels and ___ sent their children across the Atlantic Ocean, across the North American continent, one child at a time, without chaperone, as they could afford.  Nicolena, only 10 years old, crossed the ocean without family, and worked as a maid in New York City for two years, without a family, until she had enough money to join a company of Church members walking the thousand miles west to Utah Territory.  Needing to support herself in Richfield, a married Lena opened a store selling beautiful dresses she sewed.  Her son Nelson became the engineer and foreman of the Prince silver mine in Pioche, Nevada.  Nelson’s mining machinery manufactured steam, and he invented a clothes-washing system attached to the machinery, washing all the family’s laundry.  His wife Natalia Brighamina, from Sweden, baked bread weekly, and fried sugar doughnuts from the extra dough for the mining town’s children.  Natalia was Dad’s grandmother, and he knew her and loved her.  She played a pump organ and sang the old cowboy songs with the family.  Her doughnuts, her organ, and her lovingkindness made her popular and well-liked by the community.  As a small child, Dad whispered to her one day that he was hungry and would like a slice of bread with jam.  “Speak up, Sonny,” his father mocked, embarrassing the boy.  “We can’t hear you, and we all want know what you have to say.”  Natalia stood up her full 5-foot 2-inches and said sternly to her son, “I heard him perfectly well,” and led little Dad into the kitchen for his bread and jam.

Courage at Twilight: Block Party Four

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Darrel and Mary Ann brought the half-page flier to the house, inviting us to “please come” to their annual block party.  This would be my fourth since moving here.  Why not roll the wheelchairs over? I thought.  I could push Mom’s, and Dad could roll his own.  Dad almost agreed to go, but an urgent and unpredictable bladder discouraged him and convinced him to stay home.  But Mom rolled eagerly in front of me to the back-yard dinner party.  I know her tastes, and served her a hot dog with ketchup, dobs of rotini salad and coleslaw, a triangle of watermelon, and a chocolate chip cookie. She gabbed happily with the neighbors, old and new, each so friendly.  “Where does the name of Hughes come from,” she asked one neighbor, then launched into a discussion of her own ancestry.  Still in my shirt sleeves and tie from work, the new neighbor asked me if I were just coming from work, or my formal business attire was “just how you roll.”  I felt accepted either way.  An evening breeze tempered the September heat as the sun set again over the Great Salt Lake, mirrored in the water, early enough to feel like fall.   This is nice. I thought.  I made Dad’s plate and set it in a mixing bowl: burger patty with melted Havarti, a fried egg, bacon slices, a tomato slice, and the house mayonnaise-ketchup-mustard sauce, with dog in mustard on the side.  Mom carried the bowl on her lap as she rolled happily home.  “Is that for me?” Dad enthused, accepting the mixing bowl and launching into the burger.  The homemade chocolate chip cookies were to die for, and I brought home three for myself.

Courage at Twilight: Blocking Pucks

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Rob McClanahan Hockey Miracle

After dinner, I showed Dad the conference program from Utah League of Cities and Towns convention, an annual gathering of elected municipal mayors and city councils and their appointed senior staffs (e.g., me). I told him how much I enjoyed the keynote presenter, the goalkeeper from the 1980 U.S. Olympic gold-medal ice hockey team, which defeated the Soviet team for the first time ever—the “miracle” team—and who translated the principles of his athletic success to management.  On the rink, he had blocked 63 puck shots with his body armor and stick, allowing only two goals.  Dad perused the program and asked, “Did any of these classes have to do with your job?”  What I heard him say was, You didn’t belong there.  It was a feel-good waste.  You should have been in your office working, not out hob-knobbing at some irrelevant conference.  Perhaps that was not fair of me to mind read in this manner.  But I have worked as the Tooele City Attorney for more than 30 years.  I know my job.  And I don’t need his approbation to go to this or that class or conference.  I decided to answer his paternalistic question with my own humiliating fealty: “Of course, they have to do with my job, or I would not have gone to them” and by identifying the law-related sessions (which was all of them) and reminding him of the importance of making myself a valued member of a municipal team which includes six elected officials, all of whom rely on me, all of whom expect me to be the smartest person in the room, and all of whom can fire me.  I felt annoyed with myself at having answered him at all, when what I really wanted to do was say Whatever.

Courage at Twilight: In the Mirror

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Image result for butterfly shrimp

Puzzling over the contents of the deep freeze, fridge, and pantry, I announced to Mom and Dad, “I think I’ll bake your favorite crispy butterfly shrimp tonight. Okay?”  Mom nodded her smile.  “Yes!” Dad exclaimed.  “With rice!”  I had thought to steam cabbage and slice cucumbers, I told him, and he called back, “Whatever.”  What does “whatever” even mean?  His “whatever” sounded to me like a passive-aggressive wishing for rice, which I would feel guilty for not cooking, and would, of course, now cook.  But what did I care what “whatever” meant?  I cooked his rice and steamed cabbage and soaked cucumber slices in salted vinegar.  Dad met his plate with his standard sincerity, “What a beautiful-looking dinner, Roger!”    When I arrived home from work at 7:00 p.m. that evening, he held a personal mirror in one hand and a tiny scissor in the other.  As I cooked his rice, I heard him inform Mom, “I can’t see any more nose hairs in the mirror,” indicating he thought he was done.  “Well, they’re there!” Mom called back gruffly, indicating she thought he was not.  He guessed he would have to look again, he confessed meekly.  I did not want to know about his nose hairs.  Whatever.

Courage at Twilight: Sorting Dad’s Nuts

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Mom takes care of Dad as good as she can while I’m away for work 50-60 hours a week, and after I go to bed.  She assembles his ham, Swiss, and onion sandwiches, leaving mayonnaise and mustard smeared on the kitchen island, smears waiting for me to come home and shudder and reach compulsively for the washcloth.  She brings him the newspaper.  She types his emails.  She brings him snacks and nuts, deluxe mixed nuts, i.e., with no peanuts.  Growing hungry on my homeward commute, I daydreamed about enjoying some of Dad’s deluxe mixed nuts with a cold Gossner boxed chocolate milk.  I found the nuts in a new plastic container logically labeled “Nuts.”  Mom commented on my having found the nuts, and wasn’t I proud of her for sorting through them to pick out all the nuts Dad doesn’t like, throwing them away so only his favorites remained, throwing away all the almonds?  All those delicious, crunchy, roasted, salted almonds.  My favorites.  Without speaking a word of pride or censure, or explanation, I returned the nut container, unopened, to the pantry.  I had never known anyone to purchase expensive deluxe mixed nuts (i.e., no peanuts) only to cull half its contents, the almonds, and discard them.  I decided to remind her how much I love roasted almonds.  “Oh rats,” she sighed guiltily, saying she guessed she should have put the almonds in a separate container.  Labeled “Roger’s almonds,” perhaps.

Courage at Twilight: Three Cups of Bleach

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Sitting on a bar stool at the kitchen island, Mom showed me the Smith’s coupons, and showed me her shopping list, including vitamins costing their weight in platinum, including bags of Jelly Belly beans and individual Snickers snack-size bars, including two large bottles of bleach.  It seemed to me, I observed carefully, that we had bought two bottles of bleach concentrate not so long ago, and I asked with feigned disinterest how much bleach she uses.  “I use three cups of bleach for a load of whites.”  I blanched.  My nonchalance gone, I blurted to her that three cups of bleach for one moderate load of whites seemed like a lot.  “That’s just what I started doing a long time ago,” she shrugged.  I hear that observation too often at work in city hall: That’s just how we’ve always done it.  The time often comes when a different way becomes a better way.  But I still put two new bottles of brand-name bleach in the cart, and, meeting her one aisle over, she glanced over the cart and gave a quick approving nod.

Courage at Twilight: I Will Let You Know

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Hospice nurse Chantelle knows I have grown weary and knows I tried to have the “hard conversation” with Mom and Dad about possibly needing “other living arrangements”: gentle code for moving permanently to an assisted living center or nursing home.  And she knows the conversation did not go well and that I gave up and have resigned myself to taking Dad’s lead on “accommodations.”  Still, Chantelle sees he is definitely getting weaker, and she thinks the day is not far off that he will lose the ability to walk as he does now (albeit only between his recliner and the bathroom), if one can even call that walking.  She has broached the harder conversations with him about what he will want to do as conditions continue to “change”—his condition—to deteriorate.  He simply does not want to talk about it.  She brought up the potential of a urinary catheter, about switching out his recliner for his reclining wheelchair, about just staying upstairs in his bed.  Questions that need to be asked and answered.  Possibilities that need to be considered.  He just repeats, “I will let you know when that day comes.”  When that day comes.  Sarah told me a year ago: That day came and went two years ago.  When that day comes.  I appreciated knowing Chantelle appreciated my situation and was trying to support me in at least having these important conversations, even if nothing changes.  I have not given up so much as I have altered course.  These hard conversations will be had fully and immediately when Dad cannot deny their essentiality, such as, when he falls out of bed or slips naked off the toilet.  When that day comes, the conversations will no longer be avoidable, awkward, offending, taboo.  The conversations will be had when his is lying immobile on the floor or tangled up with the toilet bowl.  The questions will be asked, and answered, somehow.

Courage at Twilight: Like It Never Happened

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I sat astonished, dry-mouthed, heart pounding and face flushed, sweating, casting about for an exit.  I could not win this round.  I had opened myself to them, and had been denounced and belittled and gaslighted.  “Well,” I tried, “my purpose was just to tell you how I am feeling, not to threaten to move out, no to threaten to move you out, and now I have told you, and you have told me how you feel, and you think I’m just crazy and depressed and over-sensitive, a worrier, anxious over nothing, because all this pressure is in my head—I have made it all up—you obviously don’t need me the way I thought you did—and I think we’ve talked enough for one night—never mind—and I think it’s time for ice cream and Star Trek.  Don’t you?”  I retreated—escaped—with my ice cream and my shame—for he had shamed me soundly—to my room—for two rerun episodes, good ones from season four, and I took a sleeping pill and went to bed.  The next morning, I cooked French toast, sprayed the weeds, pruned the bushes and trees, wiped the kitchen counters, took out the garbage, and shampooed the living room carpets.  We both acted as if nothing had happened.  For dinner I made my favorite Julia Childs chicken fondue with curry cream sauce over steamed basmati rice.  “This is sure a delicious dinner, Rog,” remarked Dad.  Mom particularly liked the sauce.

Courage at Twilight: I Don’t Need You

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Difficult conversations targeting personal inadequacies and vulnerabilities seem to lodge choking in my throat for days, or weeks, or years, and sometimes forever.  But my distress pushed me into a chair to try.  I began by telling Mom and Dad how my physical health has been in decline, with the nurses recording my blood pressure—four times—at 200/100, thinking, surely, there must be a mistake with the cuff.  Google announced I was at risk of death, and ordered me to proceed immediately to the emergency room.  And then there is the exhaustion, feeling too tired to sit upright in a chair, and curling up on the concrete floor of my office every day, behind my closed door, waking always to the timer I set for 20 minutes.  Next, I recounted my worsening mental health, the depression, the mental fatigue, the hopelessness, feeling trapped and stuck, feeling the pressure every day of Mom’s and Dad’s conditions, of their very lives and deaths, waiting every moment for the next fall, cleaning up the messes in the kitchen and bathrooms, shampooing the carpets, the rusty weight of 100 things needing doing daily for their comfort and safety.  The third anniversary of my moving in with my parents, on August 1, has just passed.  The journey has been long and traumatic and exhausting, and I have felt desperate for a change.  But I am caught in this in-between world, living for them instead of progressing in my own life.  That change may be moving them to an assisted living facility and me finding a place to live, creating time and space to pursue my own dreams, to get married, to retire, to travel, to visit my children and cuddle their children.  For this particular difficult conversation, it seems, I chose the wrong approach.  They would hear nothing of it.  “You do nothing for me,” Dad declared.  I am doing just fine by myself.  The CNAs come every morning to bathe me and dress me and feed me and settle me for the day in my recliner.  Your mother applies the creams and powders at night for infection and fungus and pain.  I brush my teeth and use the bathroom by myself.  True.  All true.  “I don’t need you to do anything for me,” he said with iron will, becoming again the heavyweight fighter, the champion, pummeling every challenger.  Feebly, I jabbed back with a dozen or two tasks I do for him regularly, and he left-hooked and upper-cut each one.  Unfairly, perhaps, and desperately, I quoted Sarah, who told me before she died that Dad would have been in a nursing home two years ago if not for me.  “Sarah was wrong!” he denounced.  “I do not need to be in a nursing home, and I’m not going!”  And in a rib-cracker he told me I had manufactured all these pressures in my own mind, that they were fake.  “If you think you would be happier on your own, then move out.”  But you will find yourself more alone than ever, he said.  The only reason you’re alone here is that you retreat to your room.  You could socialize with us if you wanted, but you don’t want to socialize with us.  You run off to be alone in your room.

Courage at Twilight: Giving a Tug

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“I want to go by the bushes and trees,” Dad insisted at the end of a wheelchair walk around the block.  “Put on your list, for whenever you get around to it , to trim the junipers back from the sidewalk.”  I was reluctant to do so, I said, worried I would cut off all the green and leave only the bare ugly inside sticks.  “Do it anyway,” he said imperiously, admitting no discussion.  And I bit out a stiff, “Yes, Sir.”  Mom invited her doctor (and neighbor) over to see her needlepoints that adorn every wall.  He politely wandered the house, exclaiming, “Oh my gosh!” at each frame, and she beamed.  Quinn quizzed Dad from a paralegal coursebook.  As 9:30 p.m. came, and Quinn asked Dad if he wanted to discuss another legal scenario, I bristled at the late hour and Dad’s flagging energy, but Dad answered “Absolutely!” and they kept at it, Dad’s legal mind as sharp as ever.  I fled the house for a Saturday hike, a long hike, the longer away the better, and before the midpoint my phone dew-dropped with Mom’s text: Will you be home soon?  I need you to take me on an errand. I responded, No, I will not be home soon.  No, I will not be home, ever, I wanted to type.  As I nursed my bottle of Gatorade after the hard hike, Dad randomly asked if I knew a particular song, and began croaking out “Sunny Side of the Street.”  One of my favorite Frank Sinatra covers.  Mom soon added her higher-pitched screech, and the melody flattened into a gravelly two-tone monotone.  After the song, Dad struggled and shook to stand tall enough to push his walker toward the bathroom, dribbling along the way, muttering desperately, “Oh, God.  Help me, Abba!” and cursing his routine “Damn!” as he worked to coordinate the walker, the door, the handrails, his pivot to sit down, and pushing down his sweat pants.  “Rog, give my pants a tug,” he called on his journey back to his recliner.  “I couldn’t pull them up by myself.”  Yes, Sir.  Oh, God.  Help me, Abba.

Courage at Twilight: When You Come By

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A grimy sticky streak arced across the kitchen’s polished wood floor, tracing a track from the kitchen recycle bin to the garage.  Though I knew the answer, I pointed out the streak to Mom and asked her if she knew the answer to how it got there: my passive-aggressive encouragement of altered behavior, without offending an aged mother’s soft feelings clouded and tenderized dementia.  But the streak remained a mystery to her.  “When you come by” seems to be the phrase de jour.  When you come by, turn on your dad’s lamp.  When you come by, pick the newspaper up off the floor.  When you come by, close the blinds behind me. And my indignation finally overcame my obsequiousness: “No, Mom.  You can close the blinds yourself, like you have always done.  You’re not helpless.”  “No, Mom.  Get up and turn on the lamp yourself.  You need to move more.”  I have gently told her I will not do for her things she is perfectly capable of doing for herself.  Dad (bless his heart) said humbly one night, When you come by—not now—when you feel like it—will you bring my table a little closer, please, so I can reach it?  The “table” was his TV tray, on which I had already set his plate of streaming cheddar frittata with roasted cauliflower and broccoli.  “Of course, Dad.”  Doing it for himself, in this instance, was impossible.  “I love vegetables, Rog, every time.”  Nice people at church smile and say to me, “I’m sure your parents are so glad to have you living there.  They are so sweet.  Say hello to them for me.”  And I want to scream at them, Why don’t you stop by and say hello to them yourself!… Yes! Mom and Dad are indeed very sweet, and I’m drowning in their doting!…Yes! They are so glad to have me there, and want me close all the time, and in fact, could not live there without me.  “You are so beautiful!” Mom calls to me as I come downstairs in my Sunday best, ready for church—and I want to disappear.  Good sweet people.  I am choking on good, sweet, old, deaf, forgetful, sweet, bossy, piddling, good, sweet people.

Courage at Twilight: A Sort of Ending

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At almost 89 years, Dad just keeps waking up every morning, day after day after day.  His t-shirt garment tops are too tight around the neck and try to strangle him in his sleep, so he sleeps without a top now, or a bottom.  Life is simpler that way.  Mom pulls the shower door closed regularly at 8:00 AM with a bang which I have learned is not a body falling to the floor.  This morning, I needed to escape the comfortable incarceration of home to seek beauty on nature’s trails.  That seems to be my life’s aspirational pursuit: finding beauty.  The twisted canyon where two glaciers once ground away at each other seemed unusually lush.  On their steep meadows, cut gently by a meandering snowmelt stream, the wildflowers grew in excess of three feet tall, all of them: yellow-flowered strawberry, white columbine, lavender lupine, sticky geranium, both the pink and the white, firecracker penstemon, powdery blue bells, the unfortunately named beard tongue, larkspur, paintbrush, sweet pea, catnip, purple and yellow daisies, and blue flax.  On this day’s journey to Desolation Lake, I climbed one slow step after another, steady.  One just keeps going, on and on, up and up.  Pretty middle-aged faces passed me, in both directions, and I said Hello to each, and each became the last in a long, knotted thread of lost opportunities to connect with another human being, for my lack of skill and courage.  At the lake, feeling very tired, I stopped and sat on a log, for there is nothing wrong with stopping to rest on one’s journey.  A small flock of hairy woodpeckers, almost a foot long each, graced me by landing in the ponderosa pines and quaking aspens, very near to me—one of them looked over at me, I am sure—and hammered at the trunks in rapid staccato.  I wondered if the dasher’s one-hundredth-of-a-second stopwatch would still tick too slowly to measure the motions of these birds.  They flew off, and I moved on to the mountain’s descent, not without growing pain from a swelling Achilles tendon.  Never without pain on these trails, never without loss, and grief, all wrapped up in tenderness and love and the beauty of wildflowers and butterfly wings and birdsong and the burbling of water over rocks.  Mr. Rogers and Kermit the Frog both have taught me that every ending is a new beginning, that every good-bye points to the next reunion.  Forever.  When does a story find its end?  How does a writer know when to put down the pen?  When, perhaps, it is springtime in the Rockies, and the swallowtails fly very close and bob their hello, and the stands of bluebells and columbines waive their petals against the canvas, and a bird I have not met sends her voice to echo through the trees with the loose embouchure air of a reedy flute.