Final Trip [Part 1]

dad finger

 

It is early afternoon on Thursday July 12, 2012.

It is a hot humid summer’s day. The type of day weather forecasters like to warn you to drink plenty of fluids, put on copious amounts of sunscreen, and not to go outside if you have any respiratory problems. Cicadas buzzing in the background and somewhere in the distance I can hear a lawn mower’s growl.

I am standing in my parent’s driveway, next to my sister’s car. She is just leaving and I have just arrived. We talk about my father’s medical condition. Over the past two years he has been fighting his body and time in a losing battle with the inevitable. For the last six months he has been fighting the failure of his kidney’s by undergoing dialysis three times a week. Four weeks ago he made a decision to stop his treatment which after a week sent him to the hospital with acute uremia. Three weeks ago we brought my father home to die.

When we had him settled at home and hospice care in place I left on a trip to Brazil to visit the woman I love.  It was not an easy decision to make. I recognized that there was a possibility that my father could die while I was away. But I knew that we were playing a waiting game and that my staying at home would not change any outcomes or that I would have any positive effect on his care. I also knew that I needed to be with my “namorada’s”, she had just lost her father and I knew that being with her would give me the strength I would need after my father’s last chapter was written. She would give me the hope I needed to carry me through the despair that was coming.

My sister had been taking up the slack in my absence. Looking at her in the afternoon sun I am a bit overwhelmed with how fortunate I am to have her as a friend, an ally and a sister. I ask “How he is doing.”

Marissa responds as she normally does, airily with a sense of humor. These are tools she uses as a shield against many things. Today I know she is holding off the grief and sadness she feels about my father’s impending death. Who can blame her. I wish that I had the same ability to replace the heaviness of my heart with humor. “He is doing fine. Goofy.  I am not really sure that he knows where he is but he is in good humor. Yesterday, he was chit chatting all day long and then recited from heart The Rubaiyat of Omar Kayem. And then he slips into long conversations about absolute nonsense but enjoying every word. He was not making any sense but he was very funny and charming.”

“And Mom?

Marissa raises a single eyebrow, a trait she picked up from our father, and replies simply “You know.” I do know.  My mother has been heroic in the past three weeks let alone the last two years but she also has an overwhelming need to control all that is going on around my father and has minor and major meltdowns over minor and major things when they go wrong. Who can blame her, it is her way of coping but her need to manage and edit every situation can add to the stress level of the household significantly.

“I love you M.” And I give her a kiss on the cheek and a hug that hopefully lets her know how much I cherish her. Just as she is about to drive away I lean in the car window and ask “If I see a significant change in his condition do you want me to call or would you prefer to just to call  in for updates.” I am asking the question not because I question her devotion to Dad but because one of the sad facts that I have learned over the course of the past 25 months is that people handle grief very differently. If she were like my brother she would bury her head in the sand and tell me to call her after the last act is written. Or she could be more like me with a need to be there in the end…to make sure that Dad’s passing is gentle, surrounded by all the love we feel for him.  I believe it is better to ask the question than to live with any regrets unspoken and destined to fester.

“Good question” and then after a minute of thought says “Call me.”

As she drives down the street that we grew up on, I make my way up the slate stairs to our front door. There is a part of me that can’t wait to see my father. I have missed him while I have been away. He always loves when I am on trips, especially recently. He loves the adventure and the stories I tell him of life on the road. This is the first trip in my adult life where I have not been able to call and talk to him and I have missed the connection. I also know what is inside awaiting me and dread opening up that door.

It is early in the morning on May 26, 2010 and I am a bit of a panic because I have slept a little later than I wanted to and I am rushing to my office to make a conference call with my Israeli teammates. Luckily, a cab was just passing my building as I emerge so I breathe a deep sigh of relief as the cab makes it way across town on 65th St.  I take the time to check my email. As many of the people I work with are in Israel they have been at work for at least the five hours and there is usually a surfeit of email at that hour . I am shocked when I flip on my phone to see there are six voice mails from my mother beginning at around 4 in the morning.

Nothing ever good comes from a call in the middle of the night from your parents and my mother’s message is no exception.  My father had fallen on a walk from the bed to the bathroom. He could not get up after his fall and had called my mother to help him. Even with her assistance he could not get up because his entire right side had been paralyzed by the fall. They were now at the hospital. I tell the cab driver to turn around and take me back to the building as my priorities of the day have changed.

Emergency rooms are not amusing places to be. They are full of desperate people whose lives who have taken an unexpected, horrific turn. Folks like me, who have been called with the news of their loved one’s plight, add to the general tension. A horrendous turn of event has transpired with a person they love, and they are caught cold and are struggling to keep up with events and make sense of a new reality. They arrive at the Emergency Room carrying their anxiety like luggage. I was guilty of this myself as I entered the Overlook Hospital Emergency Room. My anxiety compounded by the difficulty of trying to escape New York at the height of rush hour.  I am not a steering wheel pounder but I am surprised that it had survived the trip with all the abuse I had inflicted on it on my drive to Summit.

When I reach the admitting desk, I ask in a voice that is so angst ridden that I barely recognize it as my own “What room is Ernst Rothkopf in. The tone of my voice surprises me and I realize that I am not going to help my parents at all if I walk into my father’s room with that level of unease. When the attendant gives me my father’s room number I take a deep breath,  force a smile on my face, and will myself to notch it down.

Dad is laying on a gurney in an exceedingly small examination room towards the back of the ER. He is wearing a cervical collar and there is pain and some other emotion I can’t identify etched on his face. Mom, sitting next to him in a folding chair, is holding his hand. When she sees me she say’s to my father “Look who is here!” and  gives me hug that contains a choked sob that signals how relieved she is to see me.

My father growl back at me “What are you doing here.” This is not him being unfriendly or unappreciative. It is actually just the opposite. He has always put his children first and me being here is makes him feel he is taking advantage of me. It is also his way of saying to me “I love you and I am glad you’re here but I can’t be a tough guy if I admit to it. “ I lean over and give him a kiss on his forehead and say “I don’t know. Someone called me and told me that you were hanging out here and it sounded like fun so I thought I would drop by.”

He smiles at me despite his pain. We have both completed the ritual of two males who love each other very much but are more comfortable with code.  I ask him gently, “So how are you doing?” He tells me simply that he has felt better and after I acknowledge that I have seen him look better and then ask “Tell me what happened.”

He tells me that around 3AM he had gotten up to “take a leak” and had stumbled near the foot of his bed and then fell. When he tried to get up from his fall, he found he could move his arms or legs. Frightened he had called for my mother, who was sleeping in a different bedroom, until she had arrived. Together they had tried to get him up but to no avail.  Finally, they had called 911 and they had come and taken him to the hospital.

My father’s fall is not a surprise to me. He has been having problems with foot neuropathy (lack of sensation) for over a decade.  I first noticed it on our trip to Alaska almost a decade before when he could not maintain his balance walking in a lake. He had seen specialists in orthopedics, neurology, physiatry, and even chiropractic medicine’s but none, to his frustration, had provided him with an adequate explanation to why he had developed neuropathy or how to treat it. Some of his frustration was self-inflicted. My father is a man with an over powering intellect and in most cases he is the brightest guy in any room. And he is a scientist. The combination produces a healthy skepticism about any answer if the person offering that opinion could not adequately explain it. If a doctor offered him a solution that he couldn’t explain or justify my father would at best question it or ignore it all together.

For example, we had visited a physician at the Hospital for Special Surgery in New York who is considered the foremost expert in the world on neuropathy. The Dr. said he did not know whether he could help Dad, but he had some approaches that he thought would be worth trying. The first step (pun not intended) was my father having some MRI’s taken of his neck and spine. Dad told him that he just had MRI’s taken and in fact had brought them with him, but the physician had insisted that new ones needed to be taken otherwise he could not treat my father. My father had grumbled about this for weeks. Delaying and postponing getting the tests done because he just couldn’t or wouldn’t see the need in taking this tests.

I ask him if he is in a lot of pain and he says no as long as he remains still he doesn’t hurt that much. So, I say “A priest, a rabbi and a reverend walk into a bar and the bartender says What is this, a joke?” Pop grimaces and says “Carol, he is trying to kill me.” This is a part of our normal banter when he has been hospitalized. I tell him bad jokes that he has heard hundreds of times before and he pretends to be pained by them. It is our way of acknowledging each other and telling each other we love each other without getting sappy about it.

Eventually, a Dr comes in. He, like many emergency room Dr’s, is very brusque and to the point. He tells us that he is from the Summit Medical Group, a collective practice of physicians in the area that treats the old man. He says that my father’s x-rays have come back negatively and that his neck is not broken. That they can’t determine whether or not my father has had a stroke but for now they can remove the cervical collar because it is not doing my father any good. He also casually mentions to us as he is removing the collar that the likelihood is that Dad will never walk again. He either is completely oblivious to his patients comfort or distracted or both because he is very rough with my father removing the cervical collar resulting in my father screaming in pain as the collar comes off. I have never heard my father in pain before and I am stunned into silence by his pain and the Dr’s awful behavior.

After he leaves, I am so angry that I cannot speak. I don’t know how physicians are trained to behave around patients but clearly they should not drop bombshells like a person never being able to walk again casually as if they were describing a case of flatulence. They should never be in such a hurry to accomplish a task, like removing a cervical collar that they cause the patients to scream in pain. I am about to head out the door to find the physician and give him a piece of my mind when another Dr appears at my father’s bedside. She too is from the Medical Group, a neurologist, and she wants to test my father to see if my father has had a stroke. Where the first Dr. was brusque and abrupt, she is patient and gentle with my father. She completes her exam and lets us know that she doesn’t think my father has had a stroke but that there is likely some neurological damage to the neck and wonders why they have removed the cervical collar. When we explain that the previous Dr. has done so she just shakes her head and gently places the collar back around my father’s neck.

As she leaves the room I ask her if I might talk to her for a moment.  Stepping into the hallway I thank her for the kindness and then tell her that I want part of the medical record to show that the first physician is not to see or treat my father. His behavior and actions were outrageous at best and  I thought the Nazi’s had treated my father with more compassion. She asks who it was that treated my father and when I tell her, she gives me a look that tells me that this is not the first complaint she has received about this guy. She promises me that she will be guiding the case from now on and for me not to worry. As I go back to my father’s cubicle I realize that medicine in this time is more about process than the patient and that Pop’s treatment would depend as much on us as it will the Dr’s,  some of whom seem to care more about the amount of money they bill than how they treat their patients.

The rest of the day slides slowly past. It is taking time to find my father a bed on the neurological floor of the hospital. I tell my father jokes and we chat but he is pretty heavily drugged and so he sleeps most of the time. Mom and I chat but there is only so much we can talk about while my father is sleeping so we are most lost in our own thoughts.

I wonder whether the damage to my father’s spine is permanent. If he is paralyzed what will it do to the man who at age 84 still went to work every day, who worked out three times a week, and who been living an independent life since grammar school. I try to push thoughts out of mind that are negative but deep in my soul I know that this is the beginning of the end.

Mom is dozing in her chair. Even though it is early afternoon her day is already 12 hours old. I wonder what the consequences of the day will mean to her. It is not difficult to recall a conversation from a car ride on a hot summer’s afternoon, the last time Pops had been seriously sick. “I have never been alone” and the tears that followed echo in my memory.

The Henry Liss Neuroscience center is located on the fifth floor of Overlook Hospital. It is considered one of the best care facilities in New Jersey for those who are experience neurological disorders and it is named for a close friend of my parents who was a pioneering neurosurgeon. It is here they bring my father late in the afternoon. As the nurses examine my father and get him settled into the room, my mother gives Henry’s wife Amy a call. She is hoping that she can use Amy’s resources to find the best available physician to treat my father.  Amy, who takes her husband’s legacy very seriously, promises that she will call a surgeon that Henry trained, Dr. John Nightly and make sure that Dad is treated with the utmost care. We leave the hospital that evening knowing that we have done all that we can and hopeful that Dad will recover the use of his legs

I arrive at the hospital early the next morning as a member of Dr. Knightly’s team, Dr. Singh are beginning their exam of Dad. He is very arrogant and is wearing his lab jacket as if it is a ducal robes. I am instantly reminded of the old joke “What is the difference between a neurosurgeon and God? God doesn’t operate on the brain.” He is confident, brusque, and speaking so quickly you wonder if he is late for another appointment. He informs us that Dad has taken a profoundly serious fall. (Thanks) That if he had fallen a little harder or landed just a bit differently, he would either be paralyzed from the neck down or dead from his cervical spine being driven into the brain stem. He tells us that the only way for us to proceed is operate on Dad to stabilize his spine or even the slightest of spills could kill him.  However they cannot operate on him now as they need to reduce the swelling and give my father time “to rest” before the surgery.

Dad asks him whether he will regain the use of legs again he tells him, brusquely and with little apparent consideration that there is a 99% chance that he won’t. That is his parting line and it leaves us feeling far worse than when he walked into the room.  Mom, the daughter of a physician is outraged over his behavior and uses language to describe his behavior that is better suited to a rapper than a grandmother of four. We  agree that we need more medical opinions than the one that was just provided so my mother once again gets on the phone with Amy Liss and gets her to promise that she will get Dr.Knightly to examine my father directly.

We spend the rest of the day sitting my father. My mother reading the ink off the NYTimes and I working on my computer. My father spends the day shuttling between tests to further map his injuries and sleeping. In our own way we all are thinking of how bad the situation is and how much worse it could have been. We all secretly hope for some magic way out of this hole we have found are selves and worry about what the future holds for my Dad.

The only good news of the day comes when they start administering glucosteroids to my father. They are being given to him to reduce the swelling of his spinal cord but they have a wonderful side effect. They take a man who has been worrying over whether he would walk again and turn him into a confidence generator. My father has always been optimist, how else does one survive a holoacaust, a war to end all wars, and George W. Bush but now he is like a good vibe transmitter. His mood is so good that I take a picture of him to send to David and Marissa. It shows him in a hospital gown, cervical collar around his neck, smile on his face giving the camera a middle finger salute. At the moment, I thought it was a turning point…a moment where he made the decision that he was going to fight back against this piece of bad luck and perhaps even kick its butt.

We get further encouragement on his prognosis the next morning. Dr. Knightly arrives followed by an entourage of attending physicians and nurse practitioners. They huddle about him in much the same way as drone bees attend to a queen as she makes her way through the hive.  Normally, this type of entrance would leave me a little cold. A Dr. arriving with entourage is sort of like a man arriving on a first date with driving a Porsche, it makes you wonder what other type of deficiencies he may have. However Knightly is very personable. He charms my mother and father by saying lovely things about their friend and his mentor Henry Liss and then in very calm tones proceeds to tell us that from what he can tell from the various images that have been taken of my father’s neck that he very nearly killed himself in the fall. A little more energy one way and the spinal column would have crushed the brain stem; a little the other way and my father’s spinal column would have snapped. That at this point, Dad’s spine is severely unstable and that the only way to ensure that Dad’s next fall will not kill him is to surgically reinforce the spine by fusing his cervical spine.

My father asks him “Will this operation allow me to walk again?” Dr.Knightly responds without hesitation. He says” There is absolutely no reason that within six months after the operation you shouldn’t be walking again.” The relief felt by all of us at this point is palpable. Give this guy anything he wants, he is saying he can help my Dad walk again. We forget in the moment that he is a surgeon, who like a mechanic on a car can and will promise you anything about the success of the repair because he is not the one who will have to drive the car afterwards.

My father asks when he can have this surgery and Knightly lets him know that his body needs to heal a bit before they operate. Not only does the swelling around the spinal column needs to subside but he needs to regain his strength as the procedure he is suggesting is massive and will last at least five hours. Knightly also explains my father’s recuperation can’t take place at home…we need to find a facility that can care for him medically for several weeks while he heals. He tells us that there will also be scheduling issues that need to be worked through and some more images that need to be taken and the details will be handled by his staff. We thank him and he and his entourage disappear as if they had never been there.

{To be continued tomorrow May 15, 2020}

About 34orion

Winston Churchill once said that if you were not a liberal when you were young you had no heart, and if you were not a conservative when you were older then you had no brain. I know I have both so what does that make me?
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