What I and almost everyone had assumed is that he had gotten a cold. My father's lung capacity was so poor that a cold or a bronchial infection would likely result in needing hospital treatment. He had been housebound for the past 3 months in an attempt to avoid exposure to potential viruses. This was hard for him since my father was an active man, always puttering around, working on some project, often his car but just as likely doing some intense home improvement task. These were off limits now. When he was not sitting in a chair on oxygen, he was able to do some dishes... maybe some light ironing and clothes folding, but not much more. He had confided in me a few weeks previous that he hated this existence, but I simply encouraged him to wait for spring when things would be better.
Due to the hospitalization, Alison told me that the trip to Seaside they were taking was postponed and they would not be doing breakfast this Sunday with me and my family. I made plans to go see them next week.
Then came the call on Wednesday. My father continued to get worse quickly and was now in the ICU. We later learned that my father did not just have IPF, he also had a condition called Wegener's Granulomatosis. It had been undiagnosed since it also affects the lungs and all attention was focused on IPF, allowing it to slip under the radar. He was in renal failure and his lungs were getting worse quickly. They said the Wegener's could be reversed, but when Alison told me that my father was going to be put on life support, we blazed out of Portland just in case. I loaded a bunch of movies on my iPad for him to watch while in the hospital. We saw him Wednesday night but he was sedated, so H and I weren't able to really visit him until Thursday.
And Thursday was nice. I talked with my dad about Cleo, about H and I, soccer, how I felt aimless in my life lately, and about the book I've been writing. We watched most of The Hobbit. We could only watch it in five minute increments and then he would fall asleep for ten minutes. I didn't have the heart to tell him it was only part 1, since he likely would not live to see part 3 come out in 2014 and I figured I'd deliver that news at the end of the movie as a reason to keep living. He wasn't allowed to talk much due to how it would deplete his oxygen, and one of my fond memories during this time is a nurse coming in to scold him for talking. He looked appropriately chagrined from this, but when she turned her back he gave me that mischievous grin of his.
And we had the talk about the end of his life. He filled out paperwork about his his wishes and was insistent that he did not want to have life support except for temporary measures, which we didn't think would be an issue. Doctors had talked about putting a ventilator in, but had phrased it as a way so as to give his lungs a break while he recovers. So it was that on Thursday evening, when my father's oxygen levels had dipped dangerously low, that we consented to having a ventilator put in.
If I knew now what I knew then, I would not have consented.
I have issues many issues with how the medical system works, and one is that they are more concerned with "life" than they are with living. One of my favorite authors, Terry Pratchett who unfortunately is diagnosed with Alzheimer's, has a great documentary about it called "Choosing to Die" that I recommend. (Full documentary is available here for free on YouTube.)
I feel like what we faced over the coming days was constant pressure to push past what my father had decreed in his advanced directive. First my father was kept sedated since he would fight the breathing tubes if he woke up. Then his right lung collapsed, inflating his throat like a bullfrog. Then the other lung collapsed. Then they had a surgery done so they could start him on dialysis. The interventions kept coming and coming. Doctors who had told us that he would be on a ventilator for 2-3 days then told us it would be a week, then that he would have a tracheotomy done to keep a machine breathing for him and that he would still be sedated, he would spend up to 2-3 months on it, and that they would put tubes in his chest due to the lung collapse - a very painful and ridiculous procedure since the point of it was to allow his lungs, the same organs that were failing him and were struggling with two diseases, to heal from collapsing-, and on and on.
Thankfully, my father's best friend John flew in from Wisconsin. He was able to ask the hard questions that Alison and I were unable to; to put the doctors' feet to the fire and make them tell us what the real odds of things were and what "recovery" meant. We learned then that the odds were astronomically slim, that they hadn't factored in that it was recommended that he needed a lung transplant PRIOR to all of their interventions, and recovery meant he would spend what was left of his life in a state immeasurably more miserable than the last few weeks had been. Without John, a caring and invested party who was able to be more removed from the situation, we likely would have found ourselves miles off course from my father's wishes after having dragged him through a bramble patch of suffering and intrusive interventions.
And this is something I was genuinely worried about. Could it be that we would fight to save his life to bring him back... only to find out that he was angry to be back and sentenced to a life in a broken body, in pain, with no way out except to wait to die again? And who would we bring back? My father, the man I remember, would be sympathetic and understanding that our pain caused us to defy his wishes and keep him here. But a crippled man, suffering tremendously, propped up by machines and half conscious (at best) from sedatives... how would he judge us?
If I had one hope during this time, it was that he would recover just enough to let us know what decision he wanted. I kept asking him to wake up in the vain hope that he could give me a sign of what to do. Sadly, this was not the case.
I don't have the words for what it's like to have to fight to allow someone you love to die. Nothing about it feels righteous, in fact, it feels quite the opposite. You feel like a ghoul. The more I look at it though, the more I realize we fought the good fight.
You see, while none of us were willing to admit the finality of this, my father had been. John and I discovered that he had said his goodbyes to both of us over the last several days. He had said to John less than a week ago that he would prepare the other side for us. On Tuesday, he had said to me that the game was up and he was rounding the home stretch (which at the time I casually dismissed and told him to keep fighting). Asking around a little bit revealed he had said similar things to others as well, and one friend revealed that my father had been coughing up blood a week earlier but had asked him not to tell us about it.
My dad knew. He was ready to move on. It was just... I didn't want to let him go, and I know everyone felt the same. Despite the fact that we made the right choice... I kept wanting to change it. As they unhooked him, as he struggled to breathe his last... I wanted to scream out that I changed my mind... that I wanted a do-over like I was some middle schooler playing foursquare on the playground.
But as the machines were rolled out leaving just Alison, John, me, and my father's body in the room, it was reassuring to see how peaceful he was. No more struggling to breathe. No more machines beeping and clicking, pumping gasses and fluids into him. There was release for all of us, and slowly, it set in that he was no longer there.
I ran out to the waiting room, tears streaming down my face, grabbed my wife and child, and held them tight. As I stared sobbing into the confused face of my daughter, I knew somehow that things would be okay. Over the past week, I have often just broken down and started crying out of the blue; feeling myself slipping into darkness. But then I'll see Cleo, cooing on a blanket, trying to accomplish the ridiculous feat of stuffing both of her fists in her mouth and it brings me back. My walk down the path of life with my father is done. No, we didn't get enough time, but tomorrow at least, Cleo and I will go for a walk instead.
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