Tag Archives: End of Life

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: Just Let Me Rest

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Raspy, distressed breathing, not a loud thump, alerted me to something wrong, and I found Dad lying on the floor quivering with total futility to move.  I verified he was not injured, then rubbed his back and encouraged him to just rest for a few minutes until he regained some strength, code for, relax while I figure out what to do, and draped a blanket over his bare legs and bottom.  Rising from his bed, he had taken two steps with his walker and collapsed, utterly spent.  “I have no strength at all,” he croaked, frightened and suddenly hoarse.  “I wonder if this could be the end?”  After his first fall two years ago, I bought a padded sling to wrap around his big chest and help me lift him, which I did now, hoisting him to his hands and knees, and I held his weight as he crawled to the couch.  More heaving brought his arms onto the couch, and my knee leveraged a hip onto the cushion.  From there I fine-tuned his position with awkward pushings and pullings.  The operation took all my strength.  Nick, the strong young nursing assistant, arrived and bathed Dad with a sponge.  He managed to bring Dad downstairs—Dad insisted on it—but I almost wished he hadn’t, wondering how I would manage to get Dad back upstairs and in bed.  He grew weaker during the day, croaking and coughing.  I served a dinner of baked squash, steamed spinach, and organic apple-wood chicken sausage, sliced for him into single-bite portions, and I watched dismayed as he stabbed his fork eight times into the plate, missing the sausage.  He began sentences only to slip into confused nonsense, and I wondered, Could this be the end?  At bedtime, I did not succeed in transferring him from his recliner to the walker seat, and he sank again to the floor, helpless.  “Just let me rest here,” he whispered, wheezing.  My morning strength failed me, my muscles ached, and I knew absolutely I could not get him up.  Our neighbor Josh is a big man who knows how to hoist big disabled men, and he ran over at my phone call.  Together (mostly Josh), we got him into the walker seat, onto the stair lift, back into the walker seat, and into bed, a pad tucked under him.  Mom is beside herself with worry and fear, and wondered to me whether this were the beginning of the end.  We will see how he fares in the night, and what the morning brings.  In the meantime, I am on call: Mom has instructions to wake me with even the smallest need.  Calm during the day’s crises, my own silent distress compounded during the day’s uneventful hours, and has grown in the quiet and dark of my room.

Courage at Twilight: Phases I Never Knew

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Every day, it seems, Dad laments, “This is my worst day yet, Rog.” Every waking walking breath is an audible grunt or groan—no normal breathing in this house.  He fights for life with all his energy and might, both of which are diminishing—he knows it, and he is disheartened.  And so am I.  In my 14 months living here, I have seen Dad progress through late-life stages I did not know existed, from the two-foot-shuffle to the hand surf, from the hand surf to the clickety cane, from the clickety cane to the walker, from the walker to the so-slow stair lift, from the stair lift to the wheelchair, pushed, then self-propelled.  The recliner is an ever-greater presence in each successive phase.  So is the pain.  My worst day yet.  What am I supposed to do with that statement, that fact?  How am I to hold and examine and process that reality?  Why, of course, I am to be a fathomless fount of patience and love, of smiles and good humor.  And, of course, I am not.  I am a shallow pond of brine, with fresh water trickling in here and there.  His reality creates mine, and I find myself more irritable and impatient, symptoms, perhaps, of feeling powerless, and empty, and tired, and stuck.  I began this experience as a consecration, a mission of providential origin, I thought, and still think.  But a mission’s initial glamor always attenuates and turns into a long hard slog.  One’s initial intentions, however sincere, begin to quiver and equivocate.  Only then can I see, do I know, the kind of missionary I am.  No saint, to be sure.  No hero, certainly.  Just a laborer who shows up day after day, whose contentment is not to be found in his perquisites but in the solitary knowledge he is doing what must be done.  That alone is ennobling, I suppose.  And will this mission, this story, have a happy ending?  As with all true stories, the answer is both yes and no—both the joy and the sorrow.  How I feel when the story ends will be my choice.  Before it ends, however, I can choose to listen with a smile, to cook and clean with good cheer, to do the honey-dos with zest instead of a sigh and a roll of the eye.  Time to stop writing.  Time to get to work.

(Pictured above: the javelina guards the varnished ramp, slippery from last night’s snow.)