The last couple of days have been rough for my dad. He’s been a fiercely independent man for about 78 of his 84 years. Maybe 79. So, being wheeled around, asked how he slept, asked if he’s hungry, does he want the bed up, or down, does this hurt, do you have pain, and on and on and on … It bothers him. I don’t want to say it drives him crazy, but that’s how he’d put it.
When I was here a week and a half ago, I wrote this post. It was hard to know how to approach them. Now, there’s no difficulty. He needs: we (my brothers and I) give. Simple formula.
As far as hospice life goes, h e just wants everyone to leave him alone. But he needs people to help him. So he’s stuck. It’s very tough for him to deal with.
Today I went with him for the first of five radiation treatments. They put him on a gurney, drove him 10 miles to Englewood Hospital, made him wait for hours while they figured out what the hell they were doing, then took x-rays and generally “cared” for him, or tortured him. My brothers and I are mad about it, and need to take some steps to make sure that the rest of his time is better than this afternoon was.
A host of well-meaning doctors and nurses are out to care for my dad and others in his situation. There’s the very professional and charming radiology/oncology specialist we dealt with today. He impresses me to no end. So kind, sort of suave in an earnest way, obviously well meaning. His nurses, their nurses, the other medical people with letters after their names … all good people who want to ease pain in the only places they identify it: X-rays, bones, bodies.
But it’s getting hard to discriminate between care and torture. Whatever kindness the radiation did to his leg, the trip and the wait took from him through his emotions. He’s going to suffer, as most of us will. Choosing your suffering from a set of options is obviously far from easy. Choosing someone else’s suffering seems impossible. But dad, brothers, and I have to get together and pick the right pain. We’re all talking about it in the same way, so we’ll get there soon. But in the end, we want dad to say what he wants, when, and how.
We’re figuring it out, and hopefully will know what he wants and what’s best very soon.
Parkinson's Disease Diary 
What I learned from my RN sister, who did some hospice care, is that palliative care is the best option for people your father’s age in the sort of no-win situation he’s in. Pain-relief can actually prolong a life by relieving the physical and emotional stress. She and I agreed that should my mother end up in pain, that there would be no useless treatment that really makes the doctors feel better, not the patient. All of these are hard decisions but I think you all are doing the right thing to bring him home and stop the “torture.” He no doubt really means it when he says he just wants to be left alone (by medical staff) in peace.
I agree. But it’s so hard to know what’s palliative and what isn’t. In my dad’s case, radiation was supposed to help him, but GOING to radiation gave him so much anxiety that he lost days as a result. You can’t see that in advance. A good, well-meaning doctor tells you something and you want to believe him. My dad’s cancer doctor’s enemy is cancer. He’s a warm, intelligent, impressive man, and he makes you want to believe. But like I said, his enemy is cancer, iIn all forms and all places. That’s a worthy foe, and I honor him for taking it on. But my dad’s enemy is pain and discomfort. It’s hard to assert your will against what a doctor thinks is best, because they have so much knowledge and institutional backing. But we had to stand up and say: “Your care, however well intended, is more damaging than just letting him be.”