I'm back home, a thousand miles away from my father. But he had another setback, and he is back in the main hospital.
I am not expecting any miracles. I know that the clock has been ticking ever since his cancer diagnosis. My frustration is with trying to get the system to share my goals. It feels like when I fell for the rebate scam at CompUSA. At that point, nobody was empowered to give me what I wanted, which was fairness--even an apology would have made me feel better. Instead, everybody did their job, and I got nothing.
Similarly, what I want for my father is the best possible combination of dignity, lucidity, and absence of pain. The operative word is possible, because what is attainable is limited. Moreover, there are trade-offs among these goals.
But what you deal with are people who are doing their job. For example, the cardiologist's job is to make sure his heart does not give out, even if it means he lies on his back for so long that the prospects for restoring diginity recede. Everyone wants to shunt him around, giving him more Hansonian medicine, which detracts from his ability to remain lucid.
For the larger goal of trying to do the best with his remaining life, nobody is in charge and nobody is empowered. Particularly in that big hospital. I'll probably be back there soon, but I don't know what medical decisions would best serve our goals and I don't know how to get the system to work for us.