The beginning of care

Will this ever end? I thought to myself as the cool November win stung my face.

It was near my nineteenth birthday as I pushed my father's wheelchair towards my compact car. It had been almost two weeks since he had been out of the hospital. After near begging his previous primary care physician to admit him back into the acute care hospital, he had been admitted and received treatment for the blood clots in his legs. Afterwards, having no other choice, he was re-admitted to the rehabilitation facility. He was there no longer than a week when he was taken to St. Josephs for the suffrage of another blood clot.

While being evaluated at St. Josephs my father because more verbal. We began to understand that the damage he had suffered was not only damage to his brain and legs in addition to a broken jaw...but he could no longer see out of his right eye.

After a week stay at St. Josephs he was released home into my care, requiring 24 hour supervision. My grandmother, boyfriend and myself began taking shifts.

Thanksgiving would be here soon...we left the eye surgeons office. Depressed and pessimistic about the future. How could we not be?

"So what are they going to do?" My Dad asked lighting a cigarette as soon as we exited the building.

"They are going to re-attach the retina in your eye so you can see again," I stated, leaving out the "hopefully" at the end of that sentence.

"Oh, they're gonna put me under, right?" My Dad asked, "There is no way they are doing it unless I am OUT of it!"

"I am sure they will put you under for the surgery," I said taking a deep breath.

"And they're gonna give me pain medicine?" My father asked, "I'm gonna need a lot of pain medicine after something like that!"

"I am sure they will give you some pain medicine," I stated firmly, beginning to grow weary of this line of questioning that was all too common and frequent with my father.

"And I'm not staying the night in the damn hospital," he started, "I've spent fourteen weeks in the hospital already," he continued.

"Dad, you spent seven weeks in the hospital and seven weeks in re-hab and if they need to keep you overnight for observation or something it is probably best that you..."

"I'm NOT GOING TO DO IT" He yelled as he exhaled cigarette smoke in my direction, "I'm NOT staying in the hospital! Those squarely ass doctors can just forget that!"

I drew in a deep breath. My father was defiant at best, and while I was grateful he had been released from the hospital and was recovering beyond anything the doctors expected, his recovery at home had been exhausting at best and at times pure torture.

He argued with us constantly. He refused his medication when it suited him. He needed 24 hour care and supervision and he fought us every step of the way. Every doctors appointment yielded an argument. Every suggestion about what he can or should do turned into a battle of wills and every step towards recovery was met with obstacles beyond anything I could possible comprehend.

I was exhausted. At times I was grateful. At times I wondered if he would fully recover and be able to live alone, and then I was reminded day after day- that thinking about anything more than what I had to contend with on that day, was fruitless.

The truth was none of us knew what lie ahead in the coming weeks, months, years...

There was simply know way to know.

My father had defied all odds. He spoke with a full-range vocabulary, although often times he confused words and suffered from Broca's aphasia; a patent's inability to comprehend language or speak with appropriately meaningful words. So he often became frustrated when the meaning of a word that was used was "just out of his reach" and he often confused similar words for others. For example, when asking for water he may use the word "mouth" or "cup." He was able to make connections but when we would suggest "do you want water?" He would become confused and agitated because he didn't seem to remember what the word "water" meant?

Verbal conflicts were frequent and physically he required a lot of care as well.
He had lost nearly 50 pounds during his stay in the hospital. He was weak, his muscles had atrophied and he was in constant pain. Leg pain, headaches, jaw aches and the inability to see out of his right eye caused him to run into things and have difficulty seeing at all...especially at night.

I was so, so grateful that he was alive and home and here with us. But, as the care giving began to take its toll I wondered- would it be like this forever? Would I feel like a slave to my father's every mood, every whim and every problem for the rest of his life?

I had no idea what lie ahead- and that was the scariest part of all.

Venom

"You let him do WHAT?" I screamed at the nurse as my mother pulled me back towards the elevator, "The damn man has a blood clot, a fucking blood clot in his leg, and YOU....YOU let him WALK AROUND this fucking hospital?" I seethed, "What kind of incompetent, incapable, dumb fucking nur..."

The elevator doors slid shut on my words as my mother pushed me into the back of the elevator.

"CALM DOWN!" She yelled, placing her hands firmly on my arms, "this isn't going to get solved right now, in this way."

"What a bunch of fucking incompetent ASSHOLES," I screamed, "he could die, they could ruin his legs, his circulation, it could cost him his legs!!!" I yelled, "all because it is too much fucking trouble to keep him in bed!!!" I screamed. "I'm getting him THE FUCK out of here, NOW!!!"

I stormed out of the elevator and stomped across the lobby slamming my fists against the glass doors, near breaking them, out into the hospital parking lot.

"Rachel!" my mother yelled after me, "just listen to me...yes, I think we should get him out of here, but you have to..."

"I have to WHAT?!?" I screamed, "what exactly do I have to do NOW, because I am quite sure I am the only one around here doing what the FUCK I am supposed to do!!!"

I was shaking, I was screaming, I had NEVER been this mad in my entire life.

An hour before, I was perfectly calm, collected, actually having a good day for once...

___________________________________________________________________

"Oh, Lin's daughter," the nurse said picking some food out of her back molar, "yes, he's right down the hall..." the nurse gestured.

"Down the hall?" I asked confused, "did you move his room?"

"No, no," the nurse said, "he's walking down the hall."

I looked and to my shock I saw my father shuffling down the hallway, holding onto his bedroom food tray for support. The back of his gown open and twisting behind him. He wore no underwear, no shorts, just the dirty hospital gown swayed on either side of him...and his legs were the size of tree trunks, swollen and red as a tomato.

My mother, who was coming up to the unit behind me, stepped off the elevator and upon looking at my face asked, "what is going on?"

I glanced at my mother, and back to the nurse, furious.

"You are aware he has four blood clots in his legs, arn't you?" I asked through clenched teeth, "you are aware that letting someone walk around with acute DVT's can cause stroke and severe venous damage, are you NOT?" I asked as my voice grew louder.

The nurse took a step back behind the nurses station and set her jaw, "Well, um, yes I am but you know your father has a Greenfield filter in and...well, he just doesn't want to stay in bed..."

I cut the nurse off, "OH I SEE," I began to yell, "so because he has a filter and can't have a stroke you think its ok to compromise the circulation in both of his legs just because you can't manage to KEEP.HIM. IN. BED!!!!" I bellowed.

"Miss West," I heard a voice to my left say as I saw the hospital administrator round the corner, "we let your father walk around the hospital because we thought it was preferable to restrains and you see, he is really strong..."

I exploded.

And now, I have to find a way to go back up to that floor and not get myself arrested.

"Karen, what do I have to do?" I said into my cell phone. Karen was a social worker from St. John Hospital, she was one of the only people who ever gave the situation with my father to me straight, no bows, no lightly-veiled optimism, just the facts, just reality- and I could not be more grateful to her for that.

"Well honey, you'll have to get a doctor to assess him and be willing to admit him back into the acute care hospital, " she continued, "then he'll get the care he needs for both the brain injury and the DVTs."

"Ok," I said, "I think I know a doctor who might help with that," I exhaled, "unless he is absolutely at this breaking point."

"Well Rachel," Karen said, "no one can be at that point more than you."

Nine Eleven

A few days had passed and my father had been placed into a step-down facility. Adjacent to a nursing home and close to an acute care hospital, I was assured that not only was this a good place for my father to be, it was THE place for my father to be.

The facility was furnished with toys, and therapists and rooms- all designed (I was told) to feed the minds of the brain injured- to nurse them back into the best condition possible. What the transferring hospital, social workers, and liaison for the facility failed to mention was that this hospital seemed to only be designed for the brain-injured. Not the brain injured who happened to also have multiple other conditions, like a life threatening blood clotting disorder...

But, I digress...

In between classes I had been spending day after exhausting day trying to communicate to the staff that in addition to care for a brain injury, my father also had to be watched for serious signs of a deep vein thrombosis. Swelling, leg pain, changes in temperature (skin temperature, not body temperature)- the fact that I had to actually explain the signs of a DVT to these medical staff exacerbated my dwindling faith in them and their abilities to care for my father...but what other choice did I have really? Take him home? Care for him on my own? Yeah, like that was even possible, let alone feasible.

I'm sorry college, career...life- but I have to take a short pit-stop in "I have no money or way of doing this- ville..." It just wasn't happening. Not to mention my father had no money coming in, social security had yet to go through, and I was, at best, making $150 a week...

My fear, apprehension and exhaustion was beginning to show in my homework as well. While I had managed to survive the first month of this ordeal and manage four classes at the near-by community college- it soon became evident that something needed to give. I was doing well in most of my classes, but I simply could not keep up with four classes any longer. I could not attend class 15 hours a week, spend equally as much time on homework, working part time and spend my nights and weekends in my father's hospital room- dealing with Recovery Scales and pulling tubes and infections and random screaming outbursts...it was just all too much.

So, I dropped one class- the only class I have ever in my life dropped- ironically enough it was biology. And, contrary to most cases, the college actually refunded my money when they had heard about the circumstances of my withdrawal. I was both relieved and saddened that my situation was in fact dire enough to warrant a full refund for my college course.

~ ~ ~ ~

It was a calm September day when I return to class after a very long and exhausting weekend at the rehabilitation facility. My father had been particularly draining and as I excited my English course I kept thinking it was going to be a miracle if I could stay awake for my twelve hour day of classes.
Today, as on most Tuesdays, I was meeting up with my boyfriend for brunch in between my English and Math courses. As I walked to my car I looked around the parking lot, oddly noticing that many other students seemed to be in their cars listening intently to the radio.
Hm, that's odd, I thought. Maybe there is something going on with sports or a concert coming to town...

I slide into my 1992 Ford Tempo and started the engine. As usual I had a Metallica CD already in the player and as "Master of Puppets" blared through my speakers I pulled out of the parking lot and headed to Big Boy or brunch.

"Hey there, baby cakes," Mike cooed as he came up and lifted me into the air in a giant bear hug.
"Hey," I said, slightly nauseated from not eating, "I'm starved, let's get a table."

As we slide into a booth in the back of the restaurant and began to look at the menu, Mike said, "So did you hear some pilot drove his plane into the World Trade Center?"
"What?" I said, half-confused, half in non-belief, Mike was famous for telling me things that were exaggerated at the least and a down-right lie at best, "What kind of idiot could miss the World Trade Center?" I said waving my hand dismissively and looking back down a the menu.

"No, no, seriously," Mike insisted, "some other plane also flew into the Pentagon."
"What the hell?" I said, still confused and not really sure of what I was hearing. It sounded too surreal, too major, to well...unbelievable.

Mike and I continued our brunch and hugged good-by in the parking lot. He departed for work and I headed back to the community college for my second class of the day.

As I pulled into the parking lot I noticed even more students listening, even more intently to their radios. I ejected Metallica from the CD player and began to listen.

"Reports are unsure at this time exactly what is behind all this..."
"We have confirmed reports that two planes did actually strike the World Trade Center and the buildings seem, at least at this moment to be holding strong..."
"A plane, landing near a large generators and in between construction trucks at the Pentagon..."

What the hell is going on?
I heard a loud noise as a plane from Selfridge Airforce Base, 5 miles away began to circle the sky.

I walk tentatively to my class and heard students talking, and crying and whispering as I approached the door. As I entered I saw the professor sitting on the desk explaining to the students, "the college is closing immediately, we are all told to dismiss our classes to be home with their families. It has been confirmed that two planes have struck the World Trade Center in New York and a third plane has touched down into the Pentagon..."

The professor looked around the room, concerned, scared, in disbelief..."go home to be with your families," he stated and walked out of the room.

I walked back to the parking lot stunned as I heard the students passing...

"They're evacuating my Dad's plant near Detroit...."
"Do you think something will happen here..."
"What about the Ren Cen..."
"I have family that work in the Trade Center..."

My eyes began to fill with tears as I realized, as well as I could at the moment, the true impact of what had happened. The World Trade Center was filled with thousands of workers each and every day....a plane crashing into that building...it had to be on purpose...but why...but who...

What is happening? I thought to myself.

Driving to the hospital to check on my father, my mind was filled with thoughts of him. Perhaps it is good he will not remember this day, I thought.

And as I drove towards Mt. Clemens, jets soaring and screaming above my head, I began to sob.