We are once again in the ... what were we doing 2 years ago today... phase. We are coming up on the 2 year anniversary of my father's death from brain cancer. Little things that most people would not notice as they go throughout their day stand out to me like beacons to remind me of that very isolating time in my life. I call it isolating because it is a time .. a 2 year period, where every event, every occasion is remembered by where we were in the continuous journey of my father's illness.
There is a very specific night that haunts me to this day. I remember it as if it just happened last night. Maybe not so much the details, like what was on the TV or what I was wearing, but the feelings are as raw today as they were 2 years ago.
Saturday, June 5, 2004
We knew things were not good. We knew we weren't curing anymore, we were waiting for the inevitable. His doctor told my mother that we were looking at weeks, not months. He had been in the hospital for awhile and everyday something faded away... first he couldn't pick things up, then he couldn't grab things at all, it eventually moved to him being unable to move anything without full assistance.
My mother called.
"We need to consider hospice...(she fades away in a muffled noise of total anguish)...I can't tell him...."
You see, at this point, no one has had the conversation with my father that his time has come. My mother had asked the doctor to do it, and his response was, "I am not sure what good it is to tell him..."
"We have to tell him, but I can't do it...."
This entire time I am sobbing silently. I compose myself and call my sister at work.
"We have to find the words to tell dad, and we have to do it together, can you come?"
"I am on my way."
She ends up having car trouble and I have to go and get her. We drive the very long drive back to the hospital with both of us exchanging masks of strength and utter despair.
We get to the hospital and enter the room in silence. I can't remeber if he was awake or asleep, because by this time he was pretty much always in and out of some sort of sleep. Mom loses it on the bench near the window... the bench was always a great place to lose it, because it was just behind his line of sight, and if your sobs were quiet enough, he had no idea how utterly lost and sad you were.
We left his room several times because the anxiety was just too great. Not one of us could start the conversation... we knew the conversation had to occur... but there are no words ...
The nurse walks in with his medicine, the new medicine that the doctor has ordered to "make him more comfortable." My mother resisted starting the morphine because we knew my dad's reaction to it from previous hospital stays and we also knew that it meant that his moments of conciousness would slip away entirely. The nurse starts to head for my father, "Mr. Randall, I have some medicine here for you..." and she sees us melt into a ball of tears..... one of us tells her, "Could you just leave it... we will give it to him......"
My mother was seated on the silent bench, I was in his recliner right next to him and Karen moved to sit on the foot of his bed. She hands him the pill cup and he loosely holds it in his hand, resting it on the bed....
"Ya know girls... it doesn't look like I am going to beat this thing......"
Oh dear God.... he is telling us. He is having the conversation with us. He is saying the words that could not come out of our mouth. He is comforting us.
We all cried... cried and cried and cried.....
He took the pill and settled in to once again find comfort the only place he could.... in sleep.
My mother had been keeping a constant vigil with him. She had not slept in days, if not weeks or months. I told her that I would stay with him that night. We had a very long and difficult journey ahead of us, and it wasn't going to end tonight.
So she left with Karen. Dad and I were alone.....
The most beautiful view out of my father's room was sunset and sunrise. It faced north, so you could see the sky turn beautiful shades of gold, red, purple and blue. The worst part of sunset was that my father suffered from sundown syndrome. The darkness of night made my father very anxious and irritable. He would phase in and out of irrational and incoherent thoughts. You very rarely got more than 45 minutes or so, of peaceful sleep. So this night, I was prepared to have another night of interrupted sleep between his and the nurses constant interruptions to "check in on us" and check vital signs.
I was not prepared for one of the worst nights in my life. The medication to help my father relax did the complete opposite. He was anxious, and very awake. He was in a lot of pain and could not get comfortable.
"Baby... please.. I gotta sit up...."
So I would get up, put his side rails down, shift him to his side, lower his legs to the ground, sit him up on the side of the bed, put his slippers on, cover him with his robe, place his arms around my neck...."ready dad"..."yeah"..."okay....1-2-3"....hoist him to as much of a standing position that I could, pivot him and place him in his chair, position him with pillows, cover him with blankets.
"Is that better?"
"yeah... thanks, babe...."
Lay back down on the silent bench, and stare up at the TV pretending to watch whatever was on....
15 to 20 mintes later
"Oh, God... it hurts.... I gotta lay down... I gotta lay down...."
"Okay, dad, okay... lets get you back into bed....."
We start the procedure in reverse.
I walk out ot the nurses station....
"He is in a lotta pain.. is there anything you can give him?"
"Well... it's not time for another dose for another 2 hours....."
"Okay.... I think he is better now that he is laying down...."
15-20 minutes later
"I gotta get up... I gotta get up...."
This cycle continued all night with each new change more urgent and desperate than the previous. I was pregnant at this time, 3 or 4 months. Early enough to think I was capable of staying up all night and continuously "carrying" my 6 ft father back and forth from the bed to the recliner. It was quickly becoming clear that by 2 or 3 o'clock, I needed help. I walked out to the nurses station...
"I need some help....He wants to get into the chair and I am pregnant and starting to hurt from helping him get up and down...."
One of the 3 nurses at the station tells me, "I'll get some one to come in and help...."
A nurses aid walks in and informs me that she can't do it alone, he is to big.
She walks out and returns with several people. They get him into the chair and leave. Of course 15 minutes later he wants back into the bed... I go back out to the nurses station... they sigh and return to the room....
"Mr. Randall, you are gonna have to get comfortable...."
They surround him with pillows under every elbow, knee, foot and up and down his back. He politely smiles to them and says thanks.
Within moments of them leaving the room, he wants up again....
This is the darkest moment in my journey and one I cannot seem to forgive myself for....He pleaded with me for 15-20 minutes to get him out of the bed and back into the chair....I could only respond with, "Dad....please... I am just so tired... I can't ... I can't get you up again.....
I remember thinking in that moment... Dear God, just - take - him..... take him soon. I just can't handle this anymore.... and I weeped....quietly on the silent bench.
By sunrise he had settled down, mostly out of shear exhaustion. I remember calling my mom and explaining the night and she said to tell the doctor to start the morphine. When the doctor came in, he said I looked tired. He turned to my father and started what sounded like the "we have no other options" speech, and I quickly put up my hand and said, "we have already talked about this....."
I followed him out of the room and told him to start the morphine. He said he was going to write the orders on the chart and cancel all vital checks and request a hospice to come and speak with us.
I left the hospital that nmorning and Mike came and picked me up. He was driving my father's van. I remember climbing into the passenger seat and crying. I remember crying all the way home. I cried myself to sleep once I got home.
I have cried the entire time as I write this post. I am haunted by my father's plea for comfort and my total inability to give it to him. I am tortured by the fact that this night was the last time he was ever able to stand and I was so angry every time I heard him speak and ask me to help him. I silently pray.. 2 years later... to be back on the silent bench again to have the opportunity to re-do that night all over again....
I have the most wonderful and compassionate people in my life... and I am thanking you in advance for any kind words that you wish comment here.... but I am asking you that you please not tell me... "you did the best that you could"... I know that... I know that the only person who can forgive myself for my thoughts and set me free from this night is me...I think telling my story here has placed my feet in the right direction.....
Saturday, June 03, 2006
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