Hard to Notice & Impossible to Ignore(the lesson)

OK enough of the political rants. PinF is back with more familiar observations.

In an attempt to respect the confidentiality and confidence of their remarks, I shall not use their names. However-- their input, observations, and advice I will share. PinF as many of you already know has been dealing with the continually spiraling health of his father from afar, certainly not something I'm comfortable with, though it's something I have no real control over. My day is spent in an office, with a major portion of it on a phone. Because I am my father's POA I am often called on by various Doctor's, social workers, and an occasional family member during my day as I monitor and and try my best to direct what is being done with regard to my father's care.

Whatever sense of responsibility I've felt to my daughter as a parent, I have felt an equal if not greater sense of responsibility as a child to my Father, as it is he who is now in distress. I have examined my motivations and loyalties and suspect that much of my sense of duty to my father and of course my mother is possibly tied into to an earlier shared experience of having faced a nearly fatal medical event in my life at age 7. It was through this experience that I viewed the scared, concerned, and loving looks of each of my parents as I looked back up at them from my hospital bed. This experience has had a much more profound effect on me than I ever really gave much thought to until I had to reverse roles and look down upon my father in his hospital bed.

Knowing this I have deliberately, slowly, and cautiously approached every request for another procedure as well as calls for "ending" the ordeal, a referance to considering hospice. My reasoning throughout has been that death is forever and so long as he shows progress I should afford my father every reasonable chance to "turn it around". This ordeal, as with any life challenging/changing event, often reveals the best and worst in all of us. Of course there have been fissures in relationships, mis-communications, and disagreements that unfortunately extreme pressures incubate. None of us knows how we will or won't react under these extreme pressures and situations until such time as we are called upon to do so in our lives. Having said this, I received an email from a friend who has felt this same burden, both with regard to the care and more importantly the decisions and the pressures they create. Her father passed away not too long ago and she knows what PinF is going through, especially with regard to the fact that I am separated physically from the situation. She wrote me: "Quality of life is something we take for granted daily, and when someone doesn’t have it, it is awful. Humans are selfish creatures, and would rather keep someone around to make themselves feel better, rather than considering that person’s quality of life."

Spoken truths are powerful.

I'm sure in hindsight PinF is on one level of sub-conciousness guilty of doing this too; it is afterall selfish human nature to "hold on" and "not give up", but the time is quickly approaching a point where I will have to. That isn't to say I have not made every decision as an informed (as best I could be) patient advocate, I believe have. Hence my decisions have been made after serious considerations of my expectations and the possible outcomes, and more importantly these decisions were made one procedure at a time. It would be very easy to view the present state of affairs and believe the course and/or decisions were wrong or could have been made differently---this is not a luxury I ever have or can afford myself. I have taken the best information I was privy to, and weighed it with what I believe my father would want and then factored in his propensity to fight coupled with his will for, and love of life.

I recently spoke with another person, one who herself has both firsthand and professional knowledge regarding end of life issues. This is a woman with a life's worth of experience and knowledge who has relationships with both me and my father; she too offered sage advice as to possible solutions to my father's dilemma. For she knows well that my father would never want to be "ware-housed" and most certainly would choose to be free of his earthly existance if asked to choose. Most importantly she offered calm support for what at times has seemed almost too much, especially at a time when I am still navigating my daughter and myself through the lingering emotional mindfields of our own lives.

As she spoke and mentioned recently seeing him and how his body weight was now down to 147 LBs. I began to have several thoughts rush into my head distracting me from what she was saying. The first was in remembering what a strong man my father was physically, and how he used his body working hard all his life. As a child his arms would almost seem as if they were "hulk like", much the same way Sophia thinks I'm Superman in her eyes, he was in mine. The other thought that rushed into my head was that of a novel I read a few months ago, The Confessions of Max Tivoli, strange I know--but this is how PinF's brain works. This is a complex novel that is in a nutshell almost metaphoric for how we all eventually leave this earth. It deals with Max who is born in 1871 a 70 year old infant who is fated to live his life in reverse, essentially giving him seventy years on this earth. Physically he appears elderly and deformed, mentally he is an infant, as he physically matures in reverse, he also mentally decreases backwards until 70 years laterwhen he is physically an infant, however he is so with a seventy year-old mind. Essentially when he becomes a middle age man, he is mentally that of a child (probably true of many middle aged men). It struck me that in many ways life ends in one form or fashion almost child-like, as you become frailer, weaker, lighter and smaller. Often times these changes can be accompanied by the mental deterioration reducing a once vibrant, strong, and independent adult to an almost child like state. Funny how that is.

PinF will obviously be coming to Philadelphia again soon, and will again confront both the reality and mortality of his father. Options are dwindling, though my responsibility remains clear, even if it means letting go. In many ways it would be easier if he would make that decision for me, but of course life's toughest moments are never easy. This fact illustrates why in life we humans draw the most meaning and best lessons from the biggest challenges. Still it remains the task of the living to understand the meanings and lessons of such events in our lives. PinF will, it'll just take time.