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.