Monday, September 6, 2010

Honor Thy Father and Thy Mother

At the end of May 2006, my father was diagnosed with stage 4 lung cancer: it had metastasized to his brain and his kidneys.  He died on July 31st.  

In January of 2009, my mother was diagnosed with osteomyelitis of the sternum.  In 1973, she received extensive rounds of cobalt radiation after a radical mastectomy.  One of the potential long-term effects of cobalt radiation treatment is what is known as "osteonecrosis" or, literally, "bone death."  In my mother's case, the bones in her sternum began to mutate sometime in the mid-1980s, creating what appeared to be bone spurs.  These continued to grow and eventually broke through the skin on her chest.  When one of these spurs subsequently fell off, it became apparent that a chronic bone infection had eaten a hole right through her sternum.  There is no cure for this kind of infection.  She died in March of 2010 of congestive heart failure brought about by acute infection.

My father received in-home hospice care in the last two months of his life; in my mother's case, this was simply not an option, given the nature of her condition.  I sat alone in my parents' living room with my father when he died and, three and a half years later, I sat alone in my mother's hospital room when she died.

To watch someone who has been an important part of your life deteriorate and die is an incredibly painful and ugly process.  In his final weeks, my dad frequently suffered from hypoxia (lack of oxygen to the brain) which caused him to experience panic attacks and hallucinate.  He coughed up blood, experienced referred pain in his right shoulder, and became incontinent.  

My mother became extremely paranoid and also experienced hallucinations: she died insisting that I had caused her death by putting her in the hospital.  She was also incontinent and, as a result of the infection, her skin became mottled and her hair fell out.  She allowed herself to starve and become dehydrated because she believed that her food and water were poisoned.  

Both my mom and my dad suffered from edema, or fluid build-up: when they slept on one side, the fluid would pool up on that side, and their faces would become abnormally swollen, distorting their features.  Both of them had a strange, nearly unbearable smell that seemed to come from deep inside of them when they breathed.  In their final hours, they experienced what is called Cheyne-Stokes breathing: at times, they would stop breathing entirely, sometimes for almost a minute, only to resume.  Because the air is traveling over membranes that have become congested, a dying person sometimes sounds as if they are drowning, trying to breathe under water--in my dad's case, this sound lasted for two days, in my mom's case, for about 12 hours.  In both cases, their mouths became puckered and fish-like, their limbs turned blue and the skin became swollen and mottled and cold.  When a person dies, their bladder and bowels empty. 

In both cases, my parents were given every form of medical attention possible (morphine, oxygen, etc.).  What I have described are simply the physical facts of death.  It is part of the story of my parents' lives: it is not the entire story, obviously.

After my dad died, I went through a phase of extreme anger, which I think I (more or less) successfully tried to suppress for well over a year.  Eventually, I simply stopped speaking about what I had seen, felt, and experienced.  When my mom was dying, the nurses repeatedly asked me whether there was anyone who could come sit with me.  I thanked them for their concern, but I told them there was no one.  In the movies, no one is ever alone at the end.  In life, sometimes we have to bear what we have to bear on our own.  That's just how it is.

I have never questioned the goodness of people's intentions.  I question the way in which we, as a culture, represent and conceptualize death and dying.  Americans don't like the idea of dying, and in many ways, we have constructed a culture that refuses to consider it.   We don't want to see it, if it isn't gentle and serene and peaceful (and it isn't, ever) and we don't want to hear about it unless we're at a safe and comfortable distance.  

We live in a culture of medical miracles, and we all want to believe in them, regardless of the circumstances.  Death can always be avoided, except when it can't, and when that happens, we would all prefer to look the other way.  

In Tolstoy's short story, "The Death of Ivan Ilych," the narrator summarizes the servant Gerasim's reaction to his dying master, Ivan Ilych: "Once when Ivan Ilych was sending him away he said straight out: "'We shall all of us die, so why should I grudge a little trouble?'-- expressing the fact that he did not think his work burdensome, because he was doing it for a dying man and hoped someone would do the same for him when his time came."

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Ralph Waldo Emerson once wrote, "Life is short, but there is always time for courtesy."