illness

Hard Wisdom

/ momsequitur / 4 Comments

After continued flirtations with death, multiple surgeries, and lengthy hospital stays, there came a point when Petey was stable and recovered enough to come home for good.

And the life which we’d known before his illness was gone forever.

The months-long fight to stay alive had taken a toll.  His strength was such that returning to nursing, or any type of work was now impossible—the simple effort of bathing and dressing exhausts him like twelve hours of nursing used to.

Petey had to come to terms with the fact that his life had become something he didn’t recognize, and never wanted.  He was forced to deal with the anger and shame of being “the invalid”.  He was a carer that now needed someone to care for him.

It wasn’t an easy transition, not for any member of the Matthews Family Band.

The Kid existed in a constant state of terror.  But my stoic child presented to the world both a face and demeanor carved from stone because loss of control meant a volcano of embarrassing and unwanted emotion would crash down in a never-ending pyroclastic flow of feelings.

I coped by indulging in a form of optimism so extreme as to almost be magical thinking; rejecting facts and the situation at hand and substituting a belief that absolutely everything would be fixed by the coming treatment/surgery/medicine/doctor, and our former lives would be restored to us.

When things were too precarious for even my almost hysterical optimism, I would go to my fallback position; numbness. 

When no one with an MD could offer any hope, and returning to that empty house every day made me think I’d die from fear, stress, and loneliness, I’d shut down. 

I’d do and say the appropriate things, but for days at a time, nothing penetrated and I sleepwalked through life. 

It was while living within this continuous crisis that friends and family stepped up or let us down.

My parents?  They burned up the highway between Greensboro and Duke.  They visited almost every day and came in with Starbucks, took us out of the hospital for meals, never left without slipping cash into our pockets, and always presented a stout shoulder and unwavering encouragement.

Other relatives treated Petey’s illness as a personal affront.  They demanded we manage and massage their feelings about the situation.  They offered nothing positive and always had a carefully curated reason why they once again were unable to make a visit to the hospital.

We had friends that carried us away for a respite from HospitalWorld.  They would tease, cajole, and fill us with what, during that dark time, passed for happiness.

And we had people with lots of thoughts and prayers, but very little else.  One neighbor asked me daily if I needed anything.  I hesitated, but finally weeks into our hellish ordeal I asked him to clean up a few piles from our dog because I was never home during daylight hours so was unable to.  He declined.

But the very next day he asked again if he could do anything to help me out. 

Thanks but no thanks.    

Our lives aren’t the lives we inhabited before the illness.  This is our normal now and we’ve had to accept that.  Is it the life we would have chosen for ourselves?

Before.

Not a chance.

But Petey’s still home and is currently sitting on the couch next to me.  And though we have tough patches, every day I hear his laugh that sounds like warm caramel and see the same twinkle of  mischief in his eyes that I fell in love with thirty-eight years ago.

Thanks for your time.

Contact debbie at d@bullcity.mom.

Hard-Won Wisdom

/ momsequitur / 2 Comments

It’s been almost six years now, since Petey came home from the hospital the last time.

For months, his back and legs had been in terrible pain that every day, got worse.  He was regularly seeing an orthopedic doctor and had had a medical text’s worth of treatments.

Nothing helped, and the pain grew worse.

The pain eventually got so bad it was becoming almost impossible to work.  Finally one day, he left the unit he’d worked in for more than twenty-five years in a wheelchair.  That shift was the last time he ever worked as a nurse.

Two months later we noticed his feet were the color of a new bruise.  He had an appointment to see our family doctor for another matter and I asked him about Petey’s feet.  He took one look and ordered us to the emergency room—he’d call and let them know we were on our way.

It turned out, the artery that supplied the blood below his waist was so blocked, it was practically non-functional. 

He needed a synthetic replacement artery.  But he might still lose his feet which had an unknowable amount of damage because for months had gone without anything close to an adequate blood supply.  The surgery, which was supposed to take three hours, took seven.  Afterward, he spent days in intensive care, on a respirator. 

The good news—his feet were okay.

The bad news—his kidneys had shut down.

This began a nightmare of dialysis, further complications and more surgeries.  He’d get stable enough to come home, only to be rushed to the E.R. in a few days for more surgery and another extended hospitalization. 

Dialysis took a heavy toll on him.  He had it twice a week, usually as an inpatient but occasionally he was at home and would visit a dialysis center.  Each session lasted four or five hours, and battered him physically and mentally.  By the time he regained a portion of strength, it was time for more dialysis.

The treatments kept him alive, but as each week passed he grew weaker and less able to bounce back.  The doctors frequently reminded us that kidney disease went in only one direction—downhill.  It was entirely likely he’d eventually need a transplant.

Petey’s world shrank to the few feet around his hospital bed.  His days spent in anxiety, pain, and uncertainty.  Our lives lurched between worry and the boredom of the sick-room, with brief flashes of abject terror. 

In less than a year Petey had gone from cheerful, active nurse, husband and father to a patient.  To many of his doctors and a few of his nurses, he became a “case”; his humanity replaced by symptoms, treatments and prognoses.

My days were spent at his bedside, acting as companion and advocate.  Petey was too sick and demoralized to take a stand, so I was the one whose foot was regularly put down with doctors and hospital staff on matters ranging from timely test results and procedures to diet and discharge.

At night I returned home to walk the dog, eat, shower, do some laundry, and go to bed.   Wash, rinse, and repeat.

Finally, in March, he was well enough to come home for good and defying kidney soothsayers, went off dialysis.  But in 160 days, he’d spent almost 120 confined to the hospital.

It’s been just about six years since the illness, and I have thoughts.  Next week I’ll share them with you, Gentle Reader, and also tell you what a good friend looks like to the person going through a catastrophic illness and the person who’s taking care of them.

Thanks for your time.

Contact debbie at d@bullcity.mom.