Tag Archives: Elder Care

Courage at Twilight: Diabetic Amyotrophy

Dad’s eyes followed me as I moved about the kitchen preparing my breakfast. “Let me know what you think of those gluten-free no-sugar keto cereals,” he commented as I rummaged through cereals bought for him that he will not eat.  You could try them yourself.  “Not blackberry jam!” he gibed when I took the bottle out of the refrigerator.  “Are you putting blackberry jam in your peanut butter granola?”  No, Dad, I’m having toast with jam.  “And is that cream cheese?”  Yes, Dad, I like it with toast and jam—reminds me of Portugal.  “You’re putting milk on your cereal, right?”  Oh, my, gosh, Dad—stop commenting on my food!  I can feel his eyes on my every movement, and I want to scream.  But they are benign, innocent, aged eyes.  Why does the inoffensive become so irksome in people we love so much?  After breakfast would come the drive to the hospital for the NCV and EMG tests.  “You brushed the snow from the Suburban, right.”  Of course, Dad.  And I shoveled the driveway.  And the Terry’s driveway—he has been looking feeble lately—and Melissa’s driveway.  I had enjoyed marching the snow blower through four inches of new powder; it sparkled in the sun at it flew.  Clearing our own driveway was anticlimactic, so I moved to the neighbors.  I hoped they would now know it was me—I enjoyed thinking of their surprise and gratitude.  And, being anonymous, I would not have to face my clumsiness at being thanked and smiling and saying you’re welcome and other social engagement awkwardness.  I have noticed my happiness is greatest when contributing to the happiness of others.  There is joy in service.  So why do I spend so much solitary energy unsuccessfully pursuing my own happiness?  There really is something to that business of finding your life by losing it.  At the hospital, the doctor performed two tests.  First, nerve conduction velocity: he hooked up small electrodes above key nerves and administered numerous not-unpainful electric shocks to measure nerve conduction in Dad’s legs and arms.  Second, electromyography: he inserted a needle in key places to “listen to the muscles” as Dad flexed them in various instructed ways.  Dr. Hunter focused on his work as I focused on Dad’s grimacing face and jumping limbs and spots of blood dripping.  The testing shows you have severe neuropathy in both legs; severe nerve damage.  We now, finally, have a diagnosis.  Diabetic amyotrophy: rare condition…severe burning leg pain …weakness and wasting of the muscles.  Experienced by older patients with moderate controlled diabetes.  No cure; no treatment.  The pain may subside, but the weakness will remain: your strength and mobility will not return.  I am sorry.  “Well…that’s life…I’m 87 in two weeks…my body is falling apart…that’s what happens.”  I retrieved the wheelchair from the back of the faithful Suburban, helped Dad slide from the front seat into the chair, pushed him through the melting ice and up the slick salt-covered ramps and through the front door to his recliner, the salt crunching under the wheels against the cold white tile.

(Pictured above; our after-hospital dinner of lemon chicken on a bed of pesto couscous with white bean and corn salsa.)

Courage at Twilight: Bittersweet Good-byes

 

“I’m not doing my arm exercises today,” Dad announced with some belligerence. I had heard the CNA coughing and sniffling continuously as she helped him bathe and dress.  How ironic, and alarming, for a health care provider to bring sickness into our home.  Dad was none too pleased, and invited her to leave an hour early.  He asked me for the physical therapy supervisor’s name (we’ll say “PT”) and phone number: “I’m going to call PT and tell him not to come back.”  Dad could not walk, could barely move, the day after PT poked and pushed and stretched him, yet a new depth of debilitation.  He made the call and left a message.  He did not confront either the CNA or PT, instead just removing himself from the threats.  For days now, there has been no question of walking to the bathroom at night: the bedside commode has to do, and it is all he can manage to transfer from the mattress to the commode three fee distant.  Today he could lift neither foot over the four-inch lip of the step-in shower stall.  On a happier note, I installed the old steel banister, removed with the stair lift installation, in the basement stairwell, making trips to the cold storage room and the freezer much easier for Mom: a “piece of cake.”  This morning I brought up frozen chicken breasts to thaw.  Hyrum came over for dinner—his last, for a while, with Mom and Dad—and I transformed the raw bird into tangy Hawaiian chicken on a coconut rice bed.  Hyrum, at age 20, is leaving for Brazil to begin his volunteer missionary service, as I did in Portugal in 1983, and as Dad did in Brazil in 1956, for The Church of Jesus Christ of Latter-day Saints.  Two years he will be gone, and I will miss him.  He is my son and my friend.  Dad told him the old stories about eating avocados the size of grapefruits for lunch and being arrested at the behest of local clergy and inviting hard men to lead their families in kneeling prayer and about feeling the love of God for the people.  Hyrum said his farewells, promising to send Mom and Dad his weekly email updates.  “I may not be alive when you get back, Hyrum,” Dad mused, “but I’ll be happy to read your emails while I’m still alive.”  Hyrum and I were both poignantly aware of the real possibility of Dad’s passing before Hyrum’s homecoming, making sweeter and sadder this good-bye from a grandfather to a grandson.

(Pictured above: Hyrum with Dad and Mom.)

The basement stairs, before and after installing the steel banister, left.

Courage at Twilight: Dirty Rice

I informed Mom and Dad I was cooking southwest wraps for dinner: ground turkey, black beans, corn, and rice rolled in tortillas and crisped in an iron skillet.  He looked at me funny and asked, “Rats for dinner?”  “Wraps,” I reassured him.  Earlier in the day he had cut himself.  He had reached through the bathroom doorway for his walker handles, and the door’s strike plate had sliced the paper skin of his forearm.  The CNA wiped the floor clean with baby wipes, and bandaged his arm.  He sat at the kitchen table telling me about it.  My daughter Laura has sent me her ten favorite recipes—all winners—and I have made two or three each week to spice up Mom’s and Dad’s dinner time.  Tonight, we gobbled up Cajun chicken with dirty rice, which I learned is rice cooked in the fats and juices and spices from cooking the sausage and chicken pieces.  Dad praised the meal no fewer than six times before we finished eating.  I relish the experience of making beautiful and delicious dishes which people enjoy.  As we ate, Dad told me the results of his Mayo Clinic spinal fluid test.  The nurse had called to inform him that his spinal fluid is “completely normal.”  Completely normal.  “My spinal fluid is completely normal,” he sounded discouraged.  “But I am getting worse by the day.”  Once again, the good news was hard to take.  No diagnosis equals no treatment.  Here was one more possibility explored.  Here was one more hope disappointed.  Here was yet another beginning of searching for elusive answers while suffering unanswerable pain and weakness and while fighting for his life and for his quality of life.  I am powerless.  All I can do is cook dirty rice.  James the physical therapist stopped by after dinner to evaluate the effectiveness of therapy.  He asked Dad all the same questions everyone else has asked.  He poked and prodded and asked “Does that hurt?” a dozen times.  Yes, it hurts.  A lot.  After ten minutes, James had figured out what dozens of doctors and nurses and tests and therapists had not figured out.  The spinal nerves are inflamed, causing him pain, due to his age and his recliner sedentariness and his stooping over and due to his spinal joints not being moved and not circulating blood to the nerves which therefore are inflamed and causing him pain.  Simple.  Just do these exercises.  And don’t sit: sitting kills your nerves.  I am skeptical of any one person who has all the answers, and that quickly.  But, could he be onto something?  I will try to help Dad to the exercises.  Meanwhile, he is too tired and weak to anything but sit in his recliner and kill his nerves.  He invited me to turn on the Christmas lights wrapped around the bushes, and asked if they had come on despite the snow.  Yep, I answered, for I had wrapped every joint and plug with black electrical tape to keep out the water, as I did last year, and the year before.

Courage at Twilight: Old Man’s Lament

Can I visit with you for a second, Rog? I know you’re up to your elbows in dishes right at the moment.  Thanks for coming over to me—I couldn’t have come to you.  I see everything you are doing for us.  You are doing all the cooking and cleaning up after.  I feel bad about that.  I would like to help you cook dinner and wash the dishes.  But I just can’t.  And I’m getting worse.  My legs hurt so bad when I try to stand, worse every day.  I’ll call the doctor tomorrow and see if they have sent my spinal fluid to the Mayo clinic—it’s been two weeks already—and I’ve gotten a lot worse.  I hope they find something so they can treat me.  I can’t stand just sitting here and deteriorating and not knowing why, or what I can do about it.  I just can’t walk at all—even with a walker my legs are too weak to walk.  Look, my walker is three feet away and I can’t even get to it without you pushing it to me.  I can’t help you, and I feel bad.  I’m so very grateful for everything you do for your mother and me.  Your meals are delicious and healthy.  Tonight’s pesto chicken pasta, and that braised asparagus, were both superb.  Do you think Olive Garden makes anything like that?  You always have to pick up after me: when I drop something, I can’t bend over to pick it up, so there it stays, unless you pick it up for me.  I love working in the yard, but you do the yardwork because I can’t.  And you fix what’s broken, like the toilet valves and the sink stoppers.  This year, you put up the Christmas lights for me.  They look so cheerful, and I’m so happy they are up and shining and bright.  Aren’t you?  I just couldn’t do it.  Two years ago, I did the lights myself.  Last year, I helped you a little.  This year, I just watched from the sidewalk, from my power wheelchair.  I tried driving it on the grass, to get closer, but the wheels just sank, and I couldn’t go anywhere but back the way I’d come.  I’m very grateful to you.  Well, that’s all I wanted to say.

Courage at Twilight: Rack and Pinion

I arise at 6:00 a.m. (ideally), slip on my gym clothes, and slink down the stairs without a sound to sit on the stationary bicycle.  I must read when I ride or I go mad with boredom and from focusing on the discomfort of hard exercise.  But Dad’s room is immediately adjacent, and the light would strike him fully in the sleeping face.  My headlamp is the answer.  I puff as I push and as I read N.T. Wright’s New Testaments translations and commentaries, and Dad is none the wiser (though I certainly hope I am).  But today the headlamp became moot, and I flipped the light switch on.  We are poorer in the pocket, but enriched with new possibilities for mobility and independence.  The stair lift finally has been installed.  And the taste is sour-sweet.  As Dad held the lever in the “up” position, the chair he sat slumped in rose slowly to the landing, pivoted 90 degrees, and carried him to the top of the staircase.  He ascended with a vacant emotionless expression.  Dad has new independence, even with increased weakness.  Dad has improved mobility, even with increased paralysis and pain.  Dad carries a dual humiliation: the marathon runner who cannot walk; sitting hunched in a chair, himself motionless, being rack-and-pinioned to the second floor.  Not a time of celebration.  Rather, a time of adjustment to a new tool and to a new routine, a time of relief with the decreased risk of ending his life horribly by falling down the stairs, a time to confront the fact that he will never climb the stairs again under his own power.  I asked for the opportunity to talk through how bedtime would now work, not just for him, but for Mom and me also, and I thought we settled on moving toward the stair lift and toward bed at 10:30 p.m. after the nightly news.  But discovered that he had settled on reading until midnight and moving himself achingly with his not-a-walker to transfer to the stair lift and push the “up” paddle, to push his heavy-duty blue walker to his bed, where he climbed in next to his sweetheart for the first time in ten long weeks, without an ounce of worry from me because of the lift.  A cause for celebration after all.  Four-year-old Gabe joined me in my own celebratory ride by sitting on my lap as I held the paddle in the “up” position and we rack-and-pinioned our way slowly up the stairs.

Courage at Twilight: Not a Walker

Dad sat reading volume “F” of the 1990 World Book Encyclopedia—“I haven’t read ‘F’ in some time”—and later at the dinner table expounded to Mom and me about Fahrenheit and Faulkner and Freedom. I think volume “L” might be his favorite.  Whereas last week he had to ask Mom to bring this and that book or plate or newspaper to him—because he could not hold both the walker handles and the object he wanted—his new caddy allows him the independence of transporting things himself.  While I searched the Deseret Industries thrift store for exercise dumbbells, which I did not find, the walker fairly stuck out its handles and introduced itself.  Fifteen dollars later, I walked into the living room and declared to Dad, “This is not a walker.”  He seemed fond of his floral-pattern walker, and I worried he might not welcome an interloper.  I explained, “This is a food caddy and a book caddy and an anything-else caddy.”  Dusty from sitting neglected in someone’s garage, I cleaned every inch of the caddy.  Next day, Dad transported his books and his lunch plates without relying on Mom or me.  He liked the like-new not-a-walker.  In a related story, Dad announced to Mom and me in church that his wheelchair cushion was freezing his bottom—we keep the wheelchair and the memory foam cushion in the faithful Suburban, and the night before had dipped to 19 degrees Fahrenheit.  I grinned and encouraged him to find consolation in not feeling too hot, for a change.

(Pictured above: Dad’s new thrift store not-a-walker caddy.)

 

Dad’s stylish pink floral old faithful walker.

Courage at Twilight: A Leg Up

Dad always slathers one piece of bread with mayonnaise and mustard which oozes out onto his hands and clothes when he bites into his onion-ham-and-Swiss sandwiches, until one day he saw my son John evenly spread a thin layer of mayo on one slice of bread and a thin layer of mustard on the other.  That does not sound revolutionary or even noteworthy to me, but to Dad it was a revelation.  He had discovered “a better sandwich.”  But he was unhappy about the hand soap Mom had bought, grousing that it did not foam, but merely dribbled down the side of the bottle instead of onto his hand.  Well, put your hand under the nozzle, Mom grumbled under her breath, unheard through his dead-battery hearing aids.  He insisted he go shopping with us so he could pick out the “right” hand soap.  I did not give him the chance: I bought some very regular foaming soap at Wal-Mart for about $1.59 each, and gave him a choice: “Which one do you want in your bathroom, the coconut-lime or the vanilla jasmine?”  Buried in the New York Times, he did not reply.  Later, he off-handed, “Thanks for the soap, Rog.”  Fleeces are another complaint.  The fireplace will not be fixed for another week, and Dad feels cold in his recliner.  He quite eagerly wished to explore the fleece jackets at Big 5.  They had very few, but we hung an XXL of four different styles.  Dad seems incapable of buying anything for himself without insisting that Mom or I or whoever is with him first buy something for themselves, which is both sweet and annoying, Mom and I loathing shopping.  When we know what we want, we do not take long reconnaissance sorties, but charge in, buy the thing, and bug out.  Mom walked quickly through store, announced that the store had nothing she wanted, and sat on a bench to await the results of his fleece deliberations.  Dad did choose two nice fleeces, though when we returned home he stayed in my old torn faded hoodie because of the convenience of already being in it.    Dad cannot raise his foot to the running board of the Might V8, let alone to the floor.  I found how to lift his leg easily from behind the knee into the car, to give him “a leg up,” after which he can hoist himself into his seat.  We went through this exercise four times on our Big 5 outing, then four more on an evening jaunt to Smith’s grocery store, and again today for church, where on the last lift he discovered how to use his right hand to lift his own left leg—another victory for self-sufficiency.  I began to worry about the wheelchair ramps I had built of wood, which had warped and twisted just enough to form half-inch lips perfect for tripping already compromised walkers.  Being a lawyer, I was disappointed in myself for not having thought sooner of the risk management implications, and drove to Wal-Mart for a roll of neon green duct tape which now decorates the toe and crown of each ramp, nicely set off against the red-brown stain.  And I baked banana cream pies for Mom’s birthday party, and finished editing my Portugal trip journal, and repaired the bathroom sink trap, and carried ham and ice cream and lima beans to the basement freezer, and mounted a grab bar in the garage to help Dad up three steps, which might as well be three mountains, and cleaned the seated walker I found at the Deseret Industries thrift store for Dad to use as a meal caddy and book caddy and other-things caddy, and ordered dress ties and a belt for Hyrum who leaves soon for Brazil, and baked the Madeiran Bolo do Caco with sweet potato and garlic.  I am a doer, always moving briskly from one job to the next, getting a lot done.  But I rarely feel satisfied, and often feel irritable, rarely savoring the things accomplished.  The doing of the thing has become more important than the thing being done, it seemed.  After checking off an arms-length of boxes, I collapse, tired and tense and wanting to do nothing more.  I could stand to slow down, to enjoy the doing of the thing rather than the mere checking of the box.  I would, perhaps, relish each accomplishment.  I confess that the banana cream pies did look wonderfully delicious.

(Pictured above: Bolo do Caco, traditional on the island of Madeira, a flat cake with sweet potato mixed in with the dough, brushed with garlic parsley butter.)

 

Banana cream pie.

 

Risk-alert ramps.

Courage at Twilight: Haunted by Stairs

Eleven o’clock at night, and Dad’s reading light burned above his recliner, with Dad comfortably settled in, intently focused on a book. I felt very tired and wanted to be in bed an hour before, what with my 6:00 a.m. wake time routine.  Voiced echoes of “back to normal” and “climb the stairs” raced chaotically in my brain.  Daring to interrupt his reading, I asked carefully if we could have a conversation.  “Of course,” he said pleasantly, plainly happy to be home.  I explained to him how frightened I felt of him attempting to climb the stairs in the middle of the night, and how traumatized I felt from weeks of pre-hospital hauling him up the stairs with a gate belt and easing him down the stairs with the gate belt (he does not remember this), and I asked him, please, for his commitment to not climb the stairs tonight, and suggested now would be an excellent time to go to sleep, when Mom and I were going to sleep, being both so tired, so we did not need to worry about him moving safely around in the night.  He had come home just that day, after all.  “I am going to climb the stairs,” he asserted with confidence, “but I will not do it tonight.  I know my limits, and I am not going to be stupid.”  “Stupid” is a word that simply could never ever describe Dad.  “Super-intelligent,” yes.  “Super-determined,” absolutely.  But I have watched Dad dozens of times push himself beyond his capacity, with the predictable collapses that followed, and wondered if he really did know his limits, or rather knew what his limits used to be, or what he wanted them to be.  Still, physical therapists had been working him hard, and the idea of him being newly cognizant of his current limits was plausible.  With no further argument, Dad shuffled to his downstairs bedroom with a “good-night,” his book and a bag of mixed nuts in hand, while I stepped up the stairs.  The next morning, a Sunday, with the new CNA’s arrival, Dad expressed his understandable desire for a shower, which meant, of course, climbing the stairs.  I sat down with him again and practically yelled at him out of my fear of his falling down the stairs.  He deferred (after the CNA demurred), and accepted a sponge bath instead.  But on Monday, day three at home, after I left for work, the CNA helped him up the stairs to the shower—how wonderful and liberating that shower must have felt—and back down again, without incident, and I was glad I had not been there, and I was glad the CNA had felt sufficiently comfortable helping him, and that the story for that day had a happy ending.  True to his word, he indicated to the caregiver on Tuesday that he felt too weak to attempt the stairs.  And with all this my tension eased somewhat.  But I knew, as I have not known before, that now was the time to install the obscenely-expensive stair lift, and that only with the stair lift could we eliminate the issue of stair climbing and substitute constant dread and risk with comfort and ease and safety and freedom and independence, if not accomplishment.  As I myself plopped down the steps to discuss stair lifts with Mom and Dad, grasping the wood handrail, my hand suddenly slipped where the housecleaner had oiled the wood, and I caught myself without falling, and I pictured Mom grasping the railing and leaning out over the stairs to let her arthritic legs follow after, and I pictured Mom’s hand slipping on the greasy handrail and Mom going down, down, the stairs with nothing to stop her, and I knew the stair lift was her safe solution as well.  Straightaway, I ran for a spray bottle of kitchen degreaser and wiped the handrail squeaky grippy clean.

Courage at Twilight: Getting Ready

For a second time, United Health Care served a termination notice, ending Dad’s care the next day. Sarah scrambled to assemble her second appeal, bolstered by Dad’s nurse and physical therapist who averred he “would benefit from continued skilled therapy to maximize patient’s independence at home and reduce rehospitalization risk.”  And for the second time the appeal was granted only after Dad was to have been expelled.  But we only need two more days, and then he will be coming home.  Not to his own bed, sadly, but to a hospital bed on the main floor, in the office and library we transformed into a bedroom, still finding room for a computer—Mom’s wedding portrait sits framed on the desk these 60 years later—and a shelf full of his favorite books, with paintings of Jesus on the walls.  The bed will come in two days, and I will assemble the commode tomorrow.  In the meantime, Dad has worked hard pushing the walker down the hall and climbing up and down two railed stairs, after which he is exhausted for hours.  Still, he makes incremental progress every day.  With new hope, lost for a time, he has been hinting stubbornly that he anticipates settling back into his old-friend habits of reading late into the night and climbing the stairs alone at 3:00 a.m. to fall into bed, and arising at 10:00 a.m. to shower and dress and to brave the stairs and eat breakfast at noon.  And my mind shudders from the memories of pulling him up the stairs with a belt and lifting him off the toilet and hoisting him into bed, repeatedly, and his trembling and groaning and collapsing under me, and the thought of continuing fills me with dread and frustration and my own trembling, and I want to scream that I’m not doing this anymore!!! In my mind I have been rehearsing speeches to him about how his unhealthy night-owl habits not only weaken him but frighten and exhaust Mom and me, and how the thought of picking up where we left off the day of the ambulance ride, as if that ride had never happened, and thinking absurdly that I’m all better now when he almost died and he still barely can move and each step alone on the stairs is a tooth-clenching death dare.  The extent of Dad’s recovery is remarkable; I had felt the reaper breathing foully on me from too close.  Still, the thought of Dad’s homecoming has brought me no joy, only stress and anxiety and the phantom smell of raw onions, and visions of mayonnaise smeared on the kitchen counter, and the awful wait as Dad somehow pulls himself slowly up 16 stairs at 3:00 in the morning when I should be sleeping soundly but cannot for knowing how impossibly difficult each stair is to step up, and how easily he could misstep and tumble to the landing in a crumpled pile, mooting in three seconds the so-long month of pains and efforts, setbacks and struggles, fears and tearful longings, and the small but hard-won victories during four weeks of hospitalization and convalescence—all that for nothing, all that for the pride of doing it my way.

(Pictured above, Dad’s office-turned-bedroom awaiting his hospital bed, and him.)

Courage at Twilight: So Many Questions

Is this the end?  Will he get better?  What help do I ask for?  What help do I accept?  How do we get him to the bathroom, up the stairs, into bed?  Do we carry him down the stairs and to the car and drive him to the hospital, or do we call 911 because we cannot safely manage?  Did you bring his hearing aids?  What brought you to the emergency room today?  Is a lumbar puncture more dangerous than a spinal tap (or are they the same thing)?  What is the difference between meningitis and encephalitis?  Will he ever come home?  What do I tell the family?  And what do I not tell?  Is the occupational therapist single?  Why won’t he eat?  How do I manage multiple group texts, frequent updates wanted?  Why am I binging on onion rings and chocolate ice cream?  Why am I so tired?  Why am I so tense?  Why do I want to vomit?  Will I get through this?  How am I going to get through this?  What will I do when my brother goes home?  What are the visiting hours?  Who will take care of Mom when I’m at work?  Will you pray for him, please?  Do you want to watch TV?  A movie?  High Road to China or White Nights or Nacho Libre or The Scarlet Pimpernel?  Do you have a Galaxy S9 charging cord?  How are his blood glucose levels?  I wish I could retire.  What are their insurance co-pays, deductibles, and out-of-pocket maximums?  How can I get all my work done?  Will the mayor fire me?  Why do my colleagues keep sending me work when they know where I am?  Did the nurse sponge his back and give him his insulin shot?  Why is his knee pain so intense?  Why is the knee fluid brown?  Why won’t he take the narcotic?  Why won’t he swallow?  Can he swallow?  What do I do if he chokes on his food?  Who brought the pretty flowers, the red and white carnations wrapped in baby’s breath?  Do you have any questions, sir?  Will I know when it’s time to gather the family?  Did you bring his hearing aid batteries?  What did you have for lunch?  Where did we leave off with James Herriot?  Wasn’t that a lovely story?  How were your onion rings, Mom?  Does he have an advanced directive?  What is your name and what day is it and where are you right now and who is the president of the United States?  Do you consent to the procedure on Mr. Baker’s behalf?  How are you feeling tonight, Dad?  Can I raise your bed or rearrange your pillows or bring you another blanket?  Can I help you brush your teeth?  Can you see the mountains from your window?  How can I know the truth about anything?  What will fill the emptiness?  Are you with me, God?

(Photo from Intermountain Health Care used pursuant to the fair use doctrine.)

Courage at Twilight: Red Ink

When Harvey turned 80, I gave him an antique workman’s lunch box, with oil rubbed into the rust—he adores antiques, and has a knack for turning junk into treasure. In the lunch box I included a homemade card with flower petals and leaves, and on the cardstock insert I wrote in my best longhand a celebratory message to my dear friend, Harvey, the hero of Rabbit Lane: Memoir of a Country Road and a one-time tanner and rendezvous mountain man who wears quietly the name Many Feathers bestowed by Goshute and Navajo chiefs.  A therapist once told me that emotional writing should be done longhand, accessing distinct brain quadrants than when typing, so I write in careful cursive my personal messages and in my journal.  In solidarity with my son, Brian, I purchased from Noodlers Inc. a whorled resin fountain pen named Ahab for its whale-shaped clip, and filled its cartridge with a blend of ink called Black Australian Rose.  But the mix was off in my ink batch, more of a cherry red than a red-and-black.  But I had bought it, so I was going to use it, and began signing official city documents in bright red ink.  “Signed in blood,” I joked rather lamely, a tad embarrassed for the bright resemblance.  The ink even bled through the cheap copy paper.  I thought to darken the red with a few drops of Moon Dust, and now the ink really does look like fresh blood instead of cherry juice, though I am enjoying signing in blood.  My message to Harvey in his 85th birthday card was written in this ink-blood.  When I came home from work on his birthday, I found a box from him on my desk.  Before opening it, Mom wanted to show me the five new grab bars in the bathrooms, the most important of which was just inside the master shower door, there anchored securely now to help Dad step over the deep tiled lip of the shower.  He acknowledged that shower ingress and egress had been precarious with him grasping the soap dish for lack of a bar.  Now the simple act of showering will be far safer and more enjoyable.  And with a doctor’s order we paid no sales tax.  Mom was happy with the installer, Austin, who was so careful and thorough and kind, and upon inspection I, too, was satisfied.  Retrieving Harvey’s box—how characteristic of the diminutive man to send me a gift on his birthday—I found inside his antique lunch box, for he had moved out after losing his third wife, and had no room for antiques in the bedroom of his daughter’s house, and did not how long he would be around anyway, and knew I would appreciate it more than anyone else in the world.

(Pictured above: Harvey on his 80th birthday with the antique lunch box.)

The antique lunch box.

 

My Ahab fountain pen resting on a pen bed made by Brian.  See Brian’s YouTube channel “Down the Breather Hole” for fun fountain pen photos and videos.

 

Black Australian Roses “blood” ink handwriting sample.

 

The new grab bars are in!

Courage at Twilight: Adapting

As we left church, Dad half wheeled and I half pushed his wheelchair down the sidewalk toward the handicapped parking stall where waited the Faithful Suburban, the Mighty V-8. He looked up at me and enthused, “This wheelchair business is working out pretty good!”  I fell speechless with pleasant surprise.  Dad was adapting, and while his condition continues to deteriorate, the wheelchair has actually improved his quality of life.  Suzie came a few days later to give the house another look over for ways we could adapt the house to Dad, rather than Dad to the house.  I had already elevated his reclining rockers by three inches, which Suzie was thrilled to see.  Kindly and encouraging, she talked with Dad about how to dress more easily and safely, how to bathe more easily and safely, how to avoid falls and fatigue, and how to pace himself.  She has us ordering various items of adaptive equipment, like a sock aid (complete with six illustrated sock aid steps) to pull on his socks without him needing to bend over or pull his feet up to his knees, and like a dressing stick to pull on his pant legs one at a time, and like a long-handled shoehorn to slip his feet into his shoes, and like sofa risers to lift the sofa height so he can escape the soft cushions.  When the power wheelchair comes (I committed the unfortunate faux pas of calling it an electric chair), we will order 5:1 (five feet long to one foot tall) portable foldable ramps for the living room, and longer ones for the garage and front porch.  Dad does not want to do any of this, but desire has become irrelevant: functionality is now what matters.  These simple, inexpensive devices will help adapt his surroundings to himself, and himself to his condition.  Like a sailboat tacking powerfully into the wind, I hope Dad will be able to pick up some speed and better enjoy the race.

Courage at Twilight: Home Health Debacle

I seethed and I fumed as I trimmed and I shaped the bushes and as I pruned the tree branches back from the house and as I ruminated on our home health debacle. My shoulders ached from raising the twenty-foot-long pole high into the canopy.  I had been so excited to observe Weston spend three hours patiently gathering Dad’s medical condition data, kindly listening to Dad describe his growing paralysis, and giving us tidbits of helpful advice (like elevating the recliners).  I had been so excited to have a physical therapist and an occupational therapist come to coach Dad how to live safely in his home, how to become stronger even.  Knowing Dad liked his yardwork, Weston said PT would show him how to work safely in the yard and how to keep his balance.  But PT came and pushed him too hard to ride the stationary bicycle and pushed him too hard to circle the house behind his walker and for days he was nearly too weak to move and never took him outside to train him in yardwork techniques and balance exercises.  PT’s second visit contained no therapy at all, only computer problems, and an abrupt announcement that she was no longer needed and would not be coming back.  Dad was too genteel to report her rudeness and abrasiveness to Weston, partly because he did not want her coming back to boss and belittle.  And OT came and reported that, indeed, a few grab bars would be helpful, which Dad had in the first place informed her.  Case manager Weston came a second time, today, spent no productive time with Dad, offered no suggestions or course of action, stated PT would not be returning, said he (the home health supervisor) had no idea who Dad might call to have grab bars installed, instructed Dad to do whatever exercise he felt was right for him and to devise his own treatment and strengthening plan, offered to get out of Dad’s hair, and announced that home health’s role was finished.  He would not be coming back.  That was it.  That was the beginning and the end of home health.  They had done nothing.  I elevated the recliners (giving them full credit for the idea).  Mom will find someone to install the grab bars.  Nothing at all.  Except I’m sure they billed Medicare for every visit.  Dad felt diminished, belittled, abandoned, and disheartened, as if the great Home Health had decided he were a lost cause, too decrepit and paralyzed, too close to knocking off for home health to do any good.  The great Home Health left Dad with the advice to figure out his own course of treatment and strengthening and balance and activity, as if the sum of their meager efforts was, We can’t help you.  Figure out how to help yourself, if you can.  Maybe Weston thinks Dad does not need home health care, that I, Roger Baker, am the de facto home health care provider.  In 295 installments, I have not used this forum to vent anger or sarcasm or skepticism, but to find strength and tenderness and hope in the details of a very challenging experience.  But today I am beside myself with frustration and discouragement at the utter lack of home health or home help or home care and feel abandoned to stumble along do our best by ourselves.  But we still watch in wonder the hummingbirds from our dinner table, see the sugar-water level dropping, refill the feeder, marvel at their tininess and beauty, and contemplate agog their brave twice-yearly over-ocean migrations to warmer lands during our winter, and to know that the world is a beautiful and good place to be, home health be damned.

Courage at Twilight: Hummingbirds and Rot

Dad made the rounds on his riding mower, the single yard-maintenance task left to him.  He donned his straw hat and sprays his arms with SPF 100 sunscreen and vroomed rapidly around the yard, missing corners and spots here and there and not knowing or caring.  On his mower, he is master.  No driver license required.  No traffic rules.  He sat on the back patio, resting, after finishing the job, when a tiny Black-chinned Hummingbird zoomed across the yard but stopped and hovered one foot from Dad’s face, eyeing him closely, pointing a long sharp beak at him in an ambiguous manner, neither clearly malevolent nor benevolent, but clearly curious.  Then she veered away to land on the feeder and lick sugar water with a pink tongue through that long beak.  Did you know the Portuguese name for Hummingbird is Beija Flor, meaning Flower Kiss?  Appropriate and romantically sweet.  Dad found the up-close-and-personal hummingbird encounter endearing and exhilarating, and stumbled into the house to tell Mom and me.  Dad does not get to see the hummingbirds Mom and I are always heralding with “There she is!” since he cannot turn his head and stiff neck.  His encounter was thus all the more personal, far from routine.  Hummingbirds are a fascinating combination of aggression and cuteness, peevishness and beauty.  But Mom and Dad and I are just glad they have found us and keep coming.  Their olive-green wings seem drab until the sunlight catches them just right, revealing a jeweled florescence.  Three days later, a rotting stench filled the garage, and I remembered that Dad had mowed the lawn, leaving the grass to compress and putresce in the canvas mower bags.  Vile black liquid dripped from the bag bottoms like bile.  I steeled myself against a recurring gag and plastic-bagged the grass for disposal in the outside cans, where the grass will continue to rot in the hot sun for another five days before the garbage truck rescues us.  Driving off to the grocery store later, Dad ventured, “Hey, Rog, you can ride the electric shopping cart, too, if you want to!”  I tried to smile at this prospect that held no attraction for me whatsoever but that offered some insight into his initial lack of enthusiasm for the motor-assisted cart.  After parking, I finally responded: “I’ll be right back, Dad,” and ran into the store to commandeer a cart and scoot it out the store doors and across the parking lot to Dad’s car door.  “What did you think?”  I pretended not to hear as I rushed a push cart over to Mom.  But I think we found a new grocery store routine.

(Hummingbird image by Daniel Roberts from Pixabay.)

 

The spotted fawn in our back yard.

Courage at Twilight: PT/OT

Weston sent Sarah and Suzie, a physical therapist and an occupational therapist, to see Dad a few days after the intake assessment.  Sarah put him on the stationary bike and instructed him to ride until he was too tired to ride anymore, and to repeat the burnout every day.  And she had him do what he will not do for me—amble around the house with his heavy-duty metallic blue walker, a stopwatch in her hand—and instructed him to practice every day because she would be timing him at every visit to see if he is improving.  The day after Sarah’s “therapy,” Dad could not walk at all, and the therapy seemed obviously counterproductive to him.  Suzie, who has a dozen hummingbird feeders at her house, looked over Dad’s house for ways we could make his life a bit easier.  Dad’s most painful moments of the day, both physically and mentally, are standing up from his recliner.  His pain is an 8 out 10 on the grimace scale, so severe that he avoids leaving his chair.  She suggested we attach risers to the feet of his recliners so Dad does not have to rise from such a plush depth, but can slide out more easily to a standing position.  What a simple idea, I thought.  (Another Duh.)  So, I brought home from Lowes some quality 2×3 lumber, cut it to size, drilled pilot holes, and attached two 26-inch lengths to the 26-inch two feet, then two more, adding a full three inches of height to the chair.  He was quite excited to try his elevated chair, now much easier to stand up from.  Of course, the increased height puts greater pressure on his hamstrings, so he must keep his feet elevated, which is better anyway for his edema.  Dad came outside and watched me while I measured the lumber, and cut it with a crosscut saw, and drilled the pilot holes, with divots for the screw heads.  Before he made it back into the house, the lumber risers were firmly anchored and his “new” chairs were ready.  Such a simple aid for such a serious problem.  And as we sat at the kitchen table eating our chicken rice almond casserole, two tiny spotted fawns wandered into the yard, stopping to nibble generously on Dad’s potentilla bushes.  Both the mule deer and the potentilla are endemic to the nearby mountains, so go well together also in our yard.  Each pull at the leaves tugged at me somewhat urgently me to shoo the fawns away, but Dad said, “Let them eat the whole bush.  I don’t care.  Don’t shoo them away.  I like to see them, such darling creatures.  I’m glad they are here.  And I’m glad the hummingbirds come to the feeder.”

Courage at Twilight: Have I Done Any Good?

Dad hears better from the front church pew, which is cut out on one side to accommodate a wheelchair. Mom sits in the pew, and Dad sits in his wheelchair, the two holding hands with their faces lifted appreciatively toward the speakers.  One eighty-year-young friend of Dad’s observed, “It’s good to see you using a wheelchair, Nelson,” implying how awful it has been to see him leaning into his cane and hanging on my arm and still barely making it down the aisle.  In choir practice before church, we rehearsed the hymn “Have I done any good?” and at night I lay in my bed asking that question of myself, with dark and pressing doubts.  For today is day 365 since I left my life alone and moved into a life with Mom and Dad as an awkward caregiver in their waning—today is my first anniversary, our first anniversary.  Will there be any more anniversaries?  Even before moving into their house, I knew the experience would be intense and trying, not for any fault of theirs, but from the story’s inexorable ending, and from my own character flaws, and that I would tend to lose my sense of self, my sense of direction in life, my sense of fatherhood in my renewed sonhood, my sense of the future and self-purpose, and I knew I would need to write about my experience, daily, to work things through in my mind, to keep from being swallowed alive.  I felt compelled to write, and indeed I did write daily entries for 265 consecutive days before faltering in fog and fatigue.  This is essay #290: 290 shards of shattered glass through which to examine and strain to comprehend my experience in all its complex facets.  If I have not done much good, that failure has not been for lack of arduous effort.  If I have done some good after all, that good was worth the effort.  This post is not pandering for praise or angling for affirmation, and is not focused on self-flagellation.  This post simply poses the question, and makes a way for me to move on in the mission of doing what I can to bring comfort and safety to my parents as they careen toward their end, that the end may be comfortably and safely in their beloved home at the foot of the great snow-topped aspen-clad mountain.  But, still, and always, I shall ask myself that question, and sing the hymn quietly in the darkness to myself at night.

 

Have I done any good in the world today?

Have I helped anyone in need?

Have I cheered up the sad and made someone feel glad?

If not, I have failed indeed.

 

Has anyone’s burden been lighter today

Because I was willing to share?

Have the sick and the weary been helped on their way?

When they needed my help was I there?

 

Then wake up and do something more

Thank dream of your mansion above.

Doing good is a pleasure, a joy beyond measure,

A blessing of duty and love.

Courage at Twilight: Practicing Balance

“I can’t walk!” Dad began as the home health case manager began his three-hour assessment. I felt proud of Dad for facing forcefully the reality of his condition.  “And I’m going downhill fast.”  Weston listened to everything Dad had to say as he inquired about every aspect of Dad’s health, from medications and mental health and mobility to bowels and balance.  He invited Dad to stand up from his kitchen chair, which required all Dad’s strength and induced level-8 pain in his legs.  “One gets to the point,” Dad explained, “where the pain induces one to not get up from the chair.  But I’m still getting up.”  Weston invited Dad to walk from the kitchen to his living room reading chair, using his cane and the kitchen counters and the piano top to surf to his destination and to point and fall in his chair.  Medical professionals measure balance on a 25-point scale, with 25 being the ideal, and, say, 9 being very concerning.  “The goal is not to get you to the ideal of 25,” Weston explained, “but to get you to from 9 to 10, or 12, or 15, to achieve improvement.  Improved balance always leads to increased safety.”  Dad was not confident he could improve, but promised to give it a try, to do whatever works.  I have talked often with my children about improving their life balance, between work, school, church, play, social life, health, exercise, nutrition, and family, and that our balance shifts constantly with our life changes.  I balanced my life as well as I knew how when I felt utterly crushed by work and responsibility and church and duty and sickness and keeping food on the table and clothes on their little backs and the bills paid.  And at times I teetered and did not balance well.  But not for lack of effort: I worked at balance, practiced it, and grew and strengthened and improved.  So, I teach them today about balance.  Weston taught Dad how to practice and improve his balance by standing in the corner against the walls of a room, with a walker in front, and letting go of both the walls and the walker for seconds at a time, seconds of being supported by nothing but his own balanced strength, knowing he could lean onto the walls or into the walker, wheels braked of course.

(Image by wal_172619 from Pixabay)

Courage at Twilight: The Time Is Six Months Past

I could hear a new voice from upstairs, a raised voice that began with “Hello!” and I knew that Sarah was giving Dad a long talking to. Through Marco Polo I had told her I needed professional advice on how to help Dad, and she had come with resources and with the right tone of voice, the tone of voice Dad learned years ago not to argue with or fight against, the tone of voice that said, This will happen!  When I thought the most important declarations had been declared, I thought I ought to join the conversation.  “Dad, you won’t ever get better.  Getting better is not the goal.  That’s the reality of where you are.  You should have begun using the walker a year ago, not never.  You should have begun using the wheelchair six months ago, not last week.  The goal is to keep you safe.  It’s time you ordered a motorized wheelchair.”  And he did not want to discuss an electric wheelchair.  “But Dad, when people see you zipping around in your motorized chair, they will think how young and active and motivated you still are, and how smart.  When they see you hanging on Roger and leaning on your cane and stumbling all stooped, they think how old you are and how you’re going downhill and how decrepit you’ve become.  The wheelchair is not a humiliation.  What you’re doing now is a humiliation.  The wheelchair is a tool of triumph, and will extend and improve your life and give you new energy and independence!”  And I agreed with every word she said, because they were all true.  She was not angry or rude, of course, just insistent that we face our reality and adjust our strategy.  She softened her voice: “We’re not ready for you to go, Dad.  Your mind is still laser sharp: you read several books a week.  We don’t want you to fall.  We don’t want you to break an arm or a leg or a hip.  We want you to stay safe so you can live in your home for years.”  And I agreed with every word she said, because they were all true.  Dad knew, too, that she spoke truth, insistent and intractable and loving truth.  And he assented.  “I’m not ready to go,” he declared.  “I will do whatever works.”  Home health is coming next week.  Physical therapy is coming next week.  Occupational therapy is coming next week.  Dad’s a fighter, and is not ready to yield the fight.  Dad has time yet, years of time, and we are determined to help him live those years.

(Pictured above: Mom and Dad in 2008.)

Courage at Twilight: Carpets, Canes, and Wheelchairs

You can imagine cream-colored carpets gathering dirt during regular big-family events where my siblings and their children and their children’s children gather to eat and talk and sing and eat more and tell stories and play games. Certain high-traffic areas are especially prone to pollution: passages between sofas; recliner curtilages; where the little ones play.  Dad has always enjoyed keeping the carpets clean, with his own carpet shampooer that begins with clear water and soap and ends with water dyed black.  He brings the carpets back to clean newness.  When I came home from work on an evening, I found him pushing the machine with one hand, barely balancing with his cane in the other, grimacing and red, and awkwardly bent at knee and hip, seeming ready to sink at any moment.  Seeing a crisis in the making, I stood with my back against the wall, waiting for him to collapse, my body tense and taut and my mind stressed and focused.  I do not take over and I do not chide or boss.  I wait and watch.  But this waiting is far from a passive, peaceful exercise: while the body is poised and still, the energized state of preparedness to pounce in advance of disaster takes a toll.  And at church he leans so heavily on my arm as I tip-toe stoically past the pews, waiting again for the trip and fall, or the spontaneous collapse.  Whether or not he was ready, for me the time for the wheelchair had come, so we had a talk.  I explained that our church mobility method was too stressful for his body, leaving him weak and fatigued for days, and was too stressful for my mind, with his every step an imminent disastrous fall.  I confessed to not being mentally sufficiently strong to stop my life’s orbit to stand with my back against the wall and watch him struggle and anguish over once-easy tasks, to stand tense and taut waiting for him to fall, at which moments I want to scream at my impotence and the agony and futility of his struggle.  I gave the kindest gentlest ultimatum I knew how: “When we go to church tomorrow, I would like you to use your wheelchair.”  It would be much easier for him and for me both, and I would appreciate it.  He looked at me, emotionless, then looked into some unseen distance, without a word, and I knew he was wrestling with overwhelming feelings of uselessness and obsolescence and whether the fight were worth the effort.  Dad has told me a hundred times, “I’m a fighter!” and his fighting spirit has seen him through many an adversity, has kept his family and his own life going in spite of terrible obstacles.  Assaulting Dad’s dignity and dousing the hot ember of his fighting spirit would hasten his demise and would be perhaps my life’s greatest sin.  So, I left my ultimatum-turned-plea floating heavily in the silent room, hoping he could find the mental niche that would allow him to use his wheelchair and to still fight on for life.  The next morning, he greeted me from his bowl of Cheerios and blueberries with a smile and called out, “Rog!  It’s time for church!  Grab that wheelchair and start up the Mighty V8!”  Hallelujah! sighed my spirit.  Glory Hallelujah!

Courage at Twilight: Temple Quarry Trail

We were here!  At the Temple Quarry Trail, for a new adventure, the adventure of the rolling immobile, Mom and Dad guided by myself and my sister Sarah pushing their wheelchairs.  I discovered the short asphalt trail when finding my hiking/biking trail which starts from the same trailhead.  Availing ourselves of the handicapped parking, and knowing the restroom was there just in case any of us needed it, we set off on the trail, Mom and Dad debuting their “new” used wheelchairs.  The trail was paved, but there was nothing flat about it, and I strained, my body slanted to 45 degrees, to muscle the chair and its occupant up the incline.  This was the place where a century and a half ago the newly-arrived Latter-day Saints chiseled by hand enormous granite blocks from the mountain as foundation stones for their new Temple in Salt Lake City, Utah.  The men worked in pairs, one holding a pointed steel bar, the other striking it with a sledgehammer, the bar man turning the bar a quarter turn, and the sledger striking the bar again, and the turn, and the strike, slowly drilling a hole six inches into the rock.  I cannot help but wonder how many arm bones and hand bones and finger bones were shattered by errant blows.  After a line of holes had been “drilled,” the mason inserted steel wedges and hammered until the granite broke with a “crack” in a neat line.  We could see the wedge holes in the giant slab of rock before us, and we shook our heads in awe at how the rudimentary techniques and tools of the time nevertheless resulted in a gloriously beautiful and sacred structure, a monument to the Living God and a tribute to his humble stonemasons and carpenters and plasterers and painters and tinsmiths and goldsmiths.  We pushed on, the river cascading in our ears, the granite mountain soaring overhead, the trees closing in gently over the trail where we pushed our parents.  There were their childhood canyons and rivers, their playgrounds and adventure grounds, and now here they were at the ends of their lives able to enjoy again, though differently, the sounds and sights and smells, because of wheeled chairs we all wish they did not need but which make these nature walks possible and pleasurable and safe (presuming one always engages the wheel breaks when letting go of the handles, which as a novice wheelchair facilitator I was careful to do).  Then the darkening clouds opened and baptized us with a gentle warm summer shower, and we turned our faces upwards and embraced each raindrop.  The Salt Lake Temple was completed and dedicated in 1893, a full forty years after its commencement.  The temple foundations stones weighed dozens of tons each, and broke the wagons and exhausted the oxen and foundered the canal boats and finally came more easily when the railroad spur reach the quarry.  But these remarkable people built that stunning thing which we call The House of the Lord.  The Temple stands strong and tall on its old granite foundation stones, not granite at all, actually, but quartz monzonite, a pretty white with black specks.  “White granite” they called it, and I am happy to call it granite, too.  We all thought we should roll the Temple Quarry Trail often, to get out of the house, to get into nature, to see the canyon as the seasons change and the gambel oaks and mountain maples and boxelders and wild cherries lose their leaves and the stream slows and freezes and the granite mountain stands as strong and as tall as ever.

In Little Cottonwood Canyon on the Temple Quarry Trail.

 

(Granite stonemason photo from Getty Images, used pursuant to the Fair Use Doctrine.)

 

Salt Lake Temple

(Salt Lake Temple photo from The Church of Jesus Christ of Latter-day Saints, used pursuant to the Fair Use Doctrine.)

Courage at Twilight: Getting the Socks Started

Every day at noon, Dad’s breakfast hour, he calls “Lucille!” for her to help him start his socks.  He can no longer reach his toes to start pulling on his socks.  When Mom was away one day, he called for with, “Hey, Rogie, will you help me get my socks started?  You mom’s not here.”  I scrunched the left sock up and covered his toes.  “I can get it from there,” letting me do only what he absolutely could not do for himself.  Next the right foot.  I have offered to help at other times—chagrined, he responds that he wants Mom do help him.  I understand.

(Image by bernswaelz from Pixabay.)

Courage at Twilight: The Permanence of Canes

Dad’s aluminum cane is covered with blue-and-white flowers.  Its use around the house is no longer optional.  I thought he might like a more “manly” or “classy” cane, and suggested we procure a genteel wood cane.  “I don’t think so,” he declined.  Later in the evening he explained, “In my own mind, a wooden cane embodies permanence, and I am not ready for this to be permanent.”  I suddenly understood, and apologized, not having meant to suggest his permanent need, only the enjoyment of something refined.  Thus esteemed, he acknowledged that he is not likely to turn back the clock and not need his cane.  I admire his courage to look the future in the face, to stare hard at its reality.  I admire his long fight for a flourishing life.  His fighting spirit has not dimmed.  He will win the prize—indeed, has already won.

(Image by julianuc from Pixabay.)

Courage at Twilight: The Hated Walker

Dad loathes his walker. His walker is a royal blue, heavy-duty model, quite nice looking, I think.  I kept it for weeks in the back of the faithful Suburban, then moved it to a corner of the garage, and finally retired it to the basement.  Dad simply refuses to use it, and scowls at even a hint of a suggestion that he ought to use it.  Hatred is not too strong a word for his feelings for that walker.  On the other hand, Dad loves his garden tools, of which he has dozens of all shapes and varieties.  I have tried to cast his walker as simply another tool for him to use for specific tasks, when only that tool will do.  He was not persuaded.  And I have not pressed the point.  I think he feels embarrassed that even the simple act of walking is almost too hard for him, when he once ran marathons (yes, the 26.2-mile kind, 13 of them).  He did remark to me recently, “I know a wheelchair is in my not-too-distant future, Rog.”  I thought admitting that eventuality was remarkably brave of him.  I hope before then the dreaded walker will become his fast and long-term friend.

Courage at Twilight: Don’t Hover

“I don’t want you to pamper me!” Dad barked.  I thought I was just being courteous, delivering his dinner, carting off his dirty dishes.  “I can do it myself.”  Watching him do it himself is painful for me because it is painful for him.  The effort to do the simplest things is enormous and exhausting.  But I respect his desire to not want paternalistic pampering.  I respect that he does not want to feel old and feeble, that he does want to feel strong and capable, despite knowing that “I’m going downhill fast, Rog.”  My opportunity is to affirm him discreetly, to help him with subtlety, to step quietly in without implying my help is needed.  So, when Dad is ready for seconds, I get up from the dinner table for an ice cube or the salt, and say with nonchalance, “I’m already up, so can I bring you something?”

Courage at Twilight: Leg Squeezers

When I awoke from foot surgery—removing neuromas in both feet, again—I heard a pump and felt a squeeze, first on one calf and then the other.  Unbeknownst to me, the surgical center staff had strapped me in leg squeezers (aka air compression leg massagers), to assist blood circulation and minimize the risk of blood clots.  I was surprised at the need for leg massagers, because the operation lasted only 45 minutes, and people sleep much longer every day without anything squeezing their legs.  When Dad’s feet started to swell, I thought maybe my leg squeezers might help his circulation as he sits reading in his chair until 3:00 or so in the morning.  But having one more thing to strap on to one’s hard-to-reach extremities and to keep track of and to not trip over is a hassle.  When he permits, I strap on the compressors and push the blue start buttons, setting the devices to inflating and squeezing and deflating and starting again.  He often straps them on without my aid, and says the leg squeezers help.

Courage at Twilight: Walking to the Mailbox

“Mom,” I whispered to the cute lady napping in the plush recliner.  Would you like to come get the mail with me?”  “Sure,” she nodded groggily, such a good sport.  We small-stepped arm-in-arm out the front door, past the pumpkins and mums, and toward the brick mailbox.  Almost there, I suggested, “What do you say we first walk to the corner?”  She would rather have not, but came along without protest.  At the corner, I ventured, “Should we walk to the next corner, or turn around?”  We had done what we both knew was helpful and enough, so we turned around, my arm crooked to fit hers, and tottered together to get the Church News, the bills, and the junk mail.  Having exercised, we were ready for a French soup of pureed potatoes, carrots, and onions, mixed with chopped spinach and mushrooms sautéed in butter and salt, enriched with heavy cream, rosemary, salt, pepper, and a bit more butter.  Très délicieux!

Courage at Twilight: Supraventricular Tachycardia

During gym class, playing volleyball—that’s when it happened. My heart started to flutter and I became weak and light-headed.  Sitting on the sidelines with my fingers pressed to my jugular, I managed to count 300 beats in a minute.  Then it stopped, and I was fine.  I was 17.  My doctor trained me to stop the runaway heart-beat using vagal maneuvers, bearing down while holding my breath.  Normally, lying on my back was all it took to slow the beat.  Fully 40 years later, the vagals would not work, and my friend took me to the emergency room after two hours at 180 bpm.  My cardiologist explained SVT—supraventricular tachycardia—a condition in which the electric circuitry of the heart becomes confused momentarily and takes an unintended and incorrect short cut, sending the heart racing.  He thought low-dose Metoprolol would do the trick, and it did.

The roofing inspector had come to examine the 25-year-old shingles, and Mom watched from the back yard, seated on the rock wall.  She began to feel funny in her eyes and head, stood up, became dizzy, and collapsed.  The mortified inspector helped Mom to a chair.  Her lip had glanced on a rock and was swollen and red.  A brain MRI showed no stroke, no tumor, no inflammation, nothing but a very healthy brain.  But the halter heart monitor revealed repeated episodes of rapid heart rate.  Mom’s doctor, a neighbor, called me to explain the test results, the textbook symptoms, and the treatment.  Knowing all about SVT, I jumped in to inform him of my condition and treatment.  We chuckled in astonishment and excitement at the genetic coincidence.  “Looks we know now where you got it from,” he said, amused.  Chuckling felt appropriate, because Mom’s condition is not a heart defect, just a minor electrical short, and easily treatable, and because after four weeks of tests and consultations and worry, we both felt so relieved to have the answer, and such a positive one.  Mom took her first dose tonight, and is already back on the stationary bicycle, albeit slowly and carefully, her fear ebbing, on her way to renewed strength.

Courage at Twilight: The Gaping Jaws of Hell (or That Damned Window Well)

Dad rode off on his mower as I began my gut-tightening planks.  (Thank you, planks.)  At rep 5, I heard a muffled clang and noticed the lawn mower engine was not running.  Outside the window sat the mower without its rider.  I knew instantly what had happened.  Bounding out the back door, I found Dad on the ground, one leg and half his pelvis in the six-foot-deep window well, where the welded-rebar cover had collapsed from under him.  He could not move, despite body-shaking effort.  All he could clutch was bark chips, which had shredded his forearms.  This notorious window had previously swallowed my sister Sarah and her three-year-old son Gabe (see my story Angel Gabriel).   An extrication procedure quickly became apparent.  1) Grab sweat pants behind hamstring and pull, lifting leg and shifting pelvis out of window well.  2) Grab sweat pants behind hamstrings and haul straight legs into kneeling position. 3) Embrace back and chest, and hoist body to hands and knees.  4) Grip under armpits and pull to a standing position.  Thank God it worked.  The nearest seat was the lawn mower, which Dad shakily resumed, turning the ignition key.  “Do you promise me you are safe to ride?” I yelled above the roar, careful not to further bruise his already battered pride.  He nodded and sped off.  It occurred to me then: this story had a multitude of bad endings, and only one good ending.  Mom’s first fall taught me never to minimize a noise or an impression.  As a result of learning that lesson, I was at Dad’s side in seconds—but only because I was home early from work and was exercising in the only part of the house from which I could have heard the well cover collapse.  How grateful I felt for circumstances to have aligned in such a way to allow my presence and awareness.  I would never debase the occurrence with the words coincidence or luckMiracle will do nicely, thank you.

Courage at Twilight: I Wasn’t There

I am wallowing in self-reproach.  Mom fell in the shower.  She does not remember falling.  She remembers only waking up on the floor, the water sprinkling down on her, the door flung open.  And I did not know.  And Dad did not know.  I asked her at breakfast about the scratch on the bridge of her nose, but she did not know where it came from.  As she sat in her Sunday dress, ready to go to church, Dad asked her how she felt.  “Not so good,” she said, seeming very tired.  I passed it off as a symptom of the sinus infection she is getting over.  She told me later about her slumping from her chair.  That morning I had awoken with a start when I thought I heard a bang.  I could hear water tinkling.  Remembering how the shower door clangs when it closes, I thought nothing more of it.  We went to church like normal, moving a little slower.  I cooked all afternoon to give Mom and Dad a nice Sunday dinner: tilapia poached in white wine with green onions, sauced with creamy mushroom-clam sauce.  For dessert I made crepes stuffed with vanilla-cream sauced apples.  It all tasted divine.  But all I could think about as I cooked and ate and washed dishes was not being there when Mom needed me.  I was there, in the same house, on the same floor, in the room next door, with Mom lying unconscious on the shower floor, being drizzled with warm water.  But I was not there for her.  I could have revived her, helped her up, given her care and attention.  But I was not there.  All this fancy French food and the effort it took and the palatable pleasure it brought meant nothing.  What would have meant something was following through on the waking start and investigating assertively and helping my mother when she needed me.  The bruise on her cheek bone is starting to show.

Courage at Twilight: Building Boxes

I didn’t go to Wal-Mart for boxes.  I went there for snacks, including cheddar fish crackers, for a day trip to see Disney’s Beauty and the Beast with Hannah at Tuacahn.  But there was the cheerful Pepperidge Farms lady collapsing boxes by the dozen, happy to give them to me when I asked.  Packing is always a daunting task, and it starts with building boxes.  With Ken Burns’ 20-hour Jazz playing b-bop and avant-garde, I started folding and taping flaps, and tossing the boxes in a heap.  I feel so sad for genius Charlie Parker, playing sax music from heaven while drugs dragged him down to a living hell, with death at 34.  At DVD’s end, the living room was a heap of empty cracker boxes, about to be filled with books I may never read but yet carry around by the decade.  My life feels about to be reduced to a stack of heavy boxes marked “books.”  But mine is a good life: I will have a safe, loving place to live with, and care for, my generous parents.  Safe places—that is what we should be building.  I guess it starts with building boxes.  Forty down; so many to go.

Courage at Twilight: The Proposal

#5.  My sister Sarah bought Mom and Dad a Facebook Portal, although they struggle with technology and do not want “a Facebook.”  The Portal sits like a small TV screen on their kitchen table.  Having my siblings’ blessing, I felt an urgency to talk with Mom and Dad immediately about my proposal to move in with them—so many puzzle pieces would need to fall into place in the right order—but I did not want to have such an important conversation on the phone, and right then I could not drive the hour each way to visit them in person.  Why not use the Portal?  When Mom and Dad answered, I saw them sitting big as life at their kitchen table.  They lifted their heads slightly from looking through scalloped bifocals.  They could see me at my desk in Tooele with my law certificates, plants, books, family photos, and Van Gogh paintings around me.  For me, too, the bifocal tilt.  I explained my concerns about their welfare and my proposal to move from my home to theirs, to help them live comfortably and safely in their home for as long as they wished.  I mustered my most persuasive presentation, anxious about how they might react.  Happily, Mom seemed relieved, and said simply, “Thank you, son.  That would be wonderful.”  Dad seemed grateful, but concerned—for me.  We talked things through—my move, my commute, my work, my parenting with Hannah—and they agreed to the proposal.  The plan was now in motion.