TURNING OFF THE FATHER

My father was dying.

Essentially, he had been “dying” for years.  He had a litany of medical problems that seemed incompatible with life—kidney failure, dialysis, prostate cancer, bladder cancer, lung cancer, skin cancer, five heart attacks, two strokes, atrial fibrillation, hypertension and high cholesterol.  You would think a man with all these problems would have been wasting away in a hospital bed, but he was still an active, functional, feisty son-of-a-bitch until about a year ago. 

I got the call from my mother while on vacation with my family in Bangkok.  She said that my father was dwindling.  He could barely muster the strength to get out of bed twice a day, eat a meal and then fall asleep at the kitchen table.  He was relying on nightly kidney dialysis. This was keeping fluid from building up in his body and filling his heart and lungs with so much water that they would certainly stop.  He’d been on home dialysis for nearly five years.  He had a portable electric machine by his bed that attached to a tube in his belly while he slept.It was disconnected every morning.   Every night two liters of fluid would flow into his body, suck out deadly toxins by the morning .With this he could function, think clearly, keep active, drive and live a normal life. He even traveled with his dialysis machine on vacations.  Now the dialysis had stopped working.

He had gone as far as a tough old Brooklyn Jew could go. Now it was really happening.  He was dying.

The adorable couple

He and my mother had been married for fifty-seven years.  She cared for him with the passion of an Intensive Care Unit nurse. In the past ten years his life had become my mother’s life.  He had nearly died more times than I can remember.  It was only the quick interventions of my mother in these times that brought him back to a reasonable quality of life.  She couldn't let him go. I came home from Asia three times to say my final good-bye to him--sure that each would be the last time I’d see him alive.  God didn't want him yet.

My mother’s voice was shaky and forced. She was sleep deprived.  She’d not had more than 5 hours  straight sleep in the last two years.  She spoke like someone who did not want to believe her own reasoning.  While she didn't want him to suffer, she also didn't want him to go.  Though he could be a major pain in the ass at times, they’d been together a lifetime. Three children, six grandchildren and him – a package deal.Now that fate was asking her to change all of this she could not make that decision.  She asked for my help.

The process of dying was nothing new to me.  Since 1989 I’d been doing work almost exclusively with victims of cancer and AIDS.    My specialty inadvertently became “palliation”--helping people die with as little suffering and as much dignity as possible.  It was a horrible and exquisite view of life’s last breath that only few get to see.  I’d seen so many patients pass away that the act of dying became a relatively predictive medical process.  The fact that I can think of it this way personally and morbidly disturbs me.  It makes me question my own damaged emotional walls and boundaries—the separation between job and life.  I  admit that this part of my job has led to a few extra stress-drinks and a few extra stress-cigars at times.  As I was the reluctant expert in this process, my mother wanted my verification that it was time to let go.  She was too close to the situation.  She’d kept him alive for so long that she couldn't make the decision to stop.  This was a family decision. If we did make the decision, she wanted me to be the one to make sure it was done right.  It was going to be a calculated decision to make as a doctor and a terrible one to make as a son.  It was going to get intense,but I owed it to him.  He’d been a good father.

I headed to the airport to start the twenty-four hour trip home.  At the airport I called my father’s doctor, Dr. Mark. He would give me the real clinical scoop on dad’s condition.  Dr. Mark and I had been classmates in medical school and had been friends for thirty years.  He’s not only one of the best doctors I know, but also has one of the biggest hearts known to man.  He’d usually make a housecall to see my father after ten hours of seeing patients in his own office.  Also, two months earlier he’d buried his own father in similar fashion.

Mark confirmed that dad was suffering.  His quality of life - except for watching daytime New Jersey TV - was nil.  His kidney failure was progressing and leaving him confused and disoriented much of the time.  Mom was suffering too.  She was stressed, sleep deprived and not looking after her own health. I’d heard enough to make up my mind before landing in New York. Soon enough I’d see for myself.

It was noon when I arrived at dad’s house. He was sitting at the kitchen table over a full bowl of lentil soup.  He was slowly and purposefully negotiating the spoon from the bowl to his mouth,controlling the shaking in his hand as best as possible to avoid spilling the soup.  My mother had tucked a thin white towel into his shirt to catch the drips.  He was dressed in white long-johns and a white thermal long sleeved shirt.  He had a thick red fleece robe wrapped around him, secured with a red fleece belt.  He had lost nearly fifty pounds and had become so anemic that he never felt warm enough anymore.  His hands, once the beautiful, delicate hands of a doctor, had shrunken and withered and become darkened with brown spots of aging.  His face had become long and expressionless, but his eyes still glowed.  He still had dark, buoyant eyes that had instilled confidence in thousands of patients during his forty-some years as a doctor.  I stood and watched him from the living room for five minutes before entering the room.  I wondered if I’d cry, but no tears came.

Finally I stepped into the kitchen and caught his eye.  It took a few seconds for him to put it together and then he smiled.  I leaned down and hugged him.  He put his arms around me and squeezed gently.

‘How are you feeling?’ I asked. 

His voice strained to push out sentences in a whisper. “I’m...still…here.  Where’s the…kids?”

“Couldn't make it this trip, Dad. Next time.”

Then he just stared at me for the longest time and smiled--like he was taking in every second possible before they ticked away.  I've looked at my boys this way, though I've never considered what it would feel like for the very last time. 

A lovely Jamaican woman named Lyn had moved into the house to help mom care for dad.  She’d only known him for a couple of months, but cared for him like patient daughter.  She looked at him with love and respect, smiled at him and helped him with his soup.  Dad was like that with people.  When you met him, you just wanted to love the guy.  He’d piss you off, but you never stopped loving him.

Mom and I de-stressing as best we could.

That night we sat down and had “the talk.”  Mom and I discussed the inevitable.  Dad was a vibrant guy who treasured life.  He loved to travel and see new things and embraced adventure.  He never wanted to be the guy withering away while the hospital equipment piled up around his bedside.  He’d told me several times over the past six months that he had no life and just wished he could die. But he was a character so full of life that when he actually got to that crossroad, he could not look down the lane any further.  I understood this.  We all say we are ready to die when it’s our time, but what will we say when that time comes along?  In a conversation that I pray I will never again have, we spoke to each other—my mother, myself and my brother and sister on the phone.  We spoke to Dr. Mark.  And finally we spoke to dad.  It was decided.  I wondered again if I would cry, but still no tears.

We stopped the treatments that night and decided to keep only those things that would make dad comfortable—oxygen, pain medicine, anti-anxiety medicine and medicine to slow down his pulse if his fast heartbeat was making him uncomfortable.  The dialysis machine sat on a cart by his bedside like a monolith with a full sterile bag of fluid on top, ready to be infused.  I switched it off and pulled out the electric plug to keep the flashing lights from keeping dad awake at night.  Kidney disease isnot the worst way to die.  As the kidneys fail, toxins fill the body and the brain.  In the early stages disorientation and confusion occur and then the brain essentially goes to sleep slowly and passively.   No one can predict how long it would take, but with barely any inherent kidney function left in dad, I guessed it wouldn't take long.  Then we all went to bed with anxiety, anticipation and a lot of self-questioning.  When you do the right thing, you expect a green light to shine as a sign of confirmation.  But the green light never comes.

Dad had never missed a night of dialysis in five years.  He awoke the next day groggy and weak and asked for help sitting up in bed. As I lifted him I took his arm in my hand and surreptitiously felt his pulse.  It was strong and fast.  He had the heart of a warrior.  It was becoming clear that he was not leaving--as anybody knows who ever waited for him--until he was damn well ready. His right big toe had become red and painful in early stages of gangrene.  I accidentally bumped it. He took a swing at me and looked at me with daggers.

“Sorry dad, it was an accident.  Do you want a pain pill?”

“What are you trying to do?  Dope me up?  I’ll go when I’m ready!  Now get me my blue shirt and black tie.”

Classy until the very end.

“Okay, in a second,” I humored him, and we kept at our custodial care of him. We stacked pillows behind his back and around his body to keep him upright.  Mom cleaned his face. He waited twenty seconds.

“Why the fuck is it taking so long?  Did you hear me?  I want my blue shirt and black tie.”  I looked at mom. 

“Best do what he says, mom.”  My mother went into the closet.  She knew which one he wanted.  She brought out a soft, light blue button down oxford and a jet black tie already knotted.  My father kept all his ties this way.  He despised retying them.  As we put the shirt and tie on over his long johns, mom asked him what he was getting dressed up for.

“I’m heading to the Iranian embassy to meet the representatives,” he said to us--like we were idiots.  With the shirt and tie in place he looked as alive as ever.  Then, dressed for success, he asked to be helped back into bed and fell asleep.

Mom and I went outside to the porch to smoke.  She lit a cigarette and I lit a cigar.  I took a deep draw, turned my face up to the spring sun and closed my eyes.  We talked about the future and a hundred what-if’s.  She couldn't bring herself to think of the day after dad would die until that day.  She was exhausted physically and now facing the emotions of losing her partner of fifty-seven years in, at most, a matter of a few days.  She was struggling with herself.

“I don’t know what God wants,” she said, “but I hope this is right.”

“I think it is, mom.” I said, “What would you want if it were you?”

“I know, I know.”

By this time my sister had arrived from Australia.  She crawled into bed with dad, hugged him and cried.  In the late afternoon he woke up and was hungry.  One thing about my father:  come Hell or high water, he never missed a meal.  I helped him sit up in bed and he motioned me to come closer to hear him.  He whispered that he wanted a Philly cheesesteak.  I told him I could make that happen.  We put his red bathrobe on him, put him in a wheelchair and moved him to the kitchen.   This was the last time he would ever get out of bed.

The next morning I awoke and went to his bedroom.  He was lying still propped up on several pillows to make his breathing easier.  He was breathing shallowly through an open-- a sign in medicine we callously refer to as the “O” sign.  It usually means the end is not far away.  I turned to walk out of the room, but he woke up.  He asked me to come closer to hear him.  I brought my face close to his and could smell the ketotic odor on his breath from the toxins building up in his body.  He whispered that he wanted to sit up.  I called my mother and sister in to help.  With my sister on one side and me on the other we lifted him by the shoulders.  His muscles had become stiff and inflexible.  His arms, once those of a bodybuilder, had become thin and boney and shook as he tried to use them to sit up.  Once at the edge of the bed my mother pushed pillows all around to support his weight.  He grimaced and moaned no matter how gently we tried to move him.  He was out of breath as though he’d just run a marathon.  The extra fluid in his body was beginning to build up in his lungs and heart.   I desperately wanted to make sure he did not go into painful cardiac failure or suffocating lung failure.   I sat down in front of him.

“Dad, I want you to take some pain medicine. We’re not trying to dope you up. The medicine will help you breathe easier.  It can dilate the blood vessels in your lungs and slow down your heart. It can make it more comfortable to breathe.”

“What’s the name of the drug?” he asked me.

“Dilaudid 2 milligrams.”

“What’s the generic name?” he asked.

“Hydromorphone.”  He stopped to consider this for a few seconds.

“Does mom agree with you?”

“Yes she does, dad.”

“Okay, I’ll take it.”

He, much like I probably will when my time comes, needed to hear it like a doctor.

That Saturday was the first time in five years that my brother, sister and I were in the same country at the same time.Old friends and cousins flocked to the house to see us together as a family.  Everyone wanted to see dad before he left.  I had called a home hospice agency to see if we could get some extra help in the house for my mother.  The nurse arrived at the house and sat at the dining room table with us getting information and signing papers.  She said they’d send a hospice package over with the medications and supportive items that dad might need.  Then she asked if she could visit with dad.

When we walked into the room dad was talking to himself and becoming agitated.  He was reaching forward like he was beginning to panic and desperately trying to sit up.  He had pulled his oxygen cannula from his nose and threw it off the bed.  My sister and brother went to the bed to help him.  I took a half milligram of Xanax, crushed it quickly, put it in water and loaded it into a syringe.  My brother pushed the liquid into my father’s mouth.  Dad tried to turn to the left, then to the right—like he was trying to get away from something.  Then he gasped once and lay back down.  His mouth was open.He was no longer breathing.  I reached down, took his hand and checked his pulse.  It had stopped.  My instinct as a doctor was to “do something”, but there was nothing left to do.  I looked over at my mother.

“He’s gone.”  I said.

The next thing I felt was my legs buckle and my body shake.  My face hit his mattress and I cried harder than I've ever cried in my life.  It was an uncontrollable, uncomfortable cry that came from no place I’d ever experienced.  My sister hugged my father and said ‘I love you daddy.’  Mom took his hand and said good-bye.  She said she’d see him again soon enough.

I left the bedroom to tell our friends that he’d passed.  The room went quiet and those who could handle seeing him lifeless went to say good-bye.  I found a bottle of Avion Tequila on the kitchen counter and poured two glasses for my brother and me.

 

“To the old man,” I said.  I poured a second one, drank it and went into a corner shaking and crying again. My doctor job was finished - it was time to be one hundred percent a son.

My sister and I stayed around for another week to help mom.  Soon enough we’d have to go back to our families halfway across the world.  Visitors would come to the house every day to bring over food and pay their respects.  In short time we had more food than the local grocery store.  My sister brought it to the local family service office near our house to be given away.  Dad would have liked that.  When the people came in, I generally left the house.  I can handle a man dying.  Apparently I can’t handle the conversations that follow.  

It is nearly four weeks since dad passed and each day is still a bit of a struggle. I go between sad, numb and stuck in neutral. I’m back at work in my Jungle Clinic in Indonesia. Plying my craft seems to lift my spirits or at least defer the feelings for a few hours at a time.  Emergency cases, more than anything, help me to feel normal and engaged—if that makes any sense.  I’m not sleeping well.  Each morning my body wakes up at 4:43 AM.  I think that was around the time on that Saturday, on the other side of the world, that dad passed away.  The body remembers what the brain longs to forget.  There are a lot of unexpected emotions at play.  Everyone says it’s going to take some time.

I have time.

From Boys to Men