88 y/o in four days, stage IV base of tongue cancer w/ lymph node involvement both sides of neck, just finished week five of radiation with weekly Erbitux chemo
He has not lost too much weight throughout treatment so far, but only weighs 139.6. He was in the hospital when we got there, as he had tried to swallow his pills with water but they were aspirated into his lungs. He is on the PEG tube full time using it for 100% of his nutrition and meds.
He had what they thought at the time was aspiration pneumonia but turned out to be an upper airway obstruction causing almost constant coughing. He is not being medically compliant in some ways, i.e., he refused to fill the prescription for the pneumonia antibiotic. It is only coincidentally fortunate that it turned out he didn't need it after all.
However, he also did not fill the script for Diltiazem (heart med) to be taken as smaller tablets than what he had, several times a day. He was without this medication for seven days while he tried unsuccessfully to crush the larger one, use a capsule of it, all to no avail.
Finally yesterday he got scared that he was without it for so long. His cardiologist prescribed a smaller amount that can be crushed more easily and taken through the tube.
It was a most difficult visit. He is so angry and mean that it was unpleasant (understatement of the year) to be around him. Having cancer has only aggravated his already-negative personality. He yelled, he screamed, he swore, he commanded people do this or that, sit here or there, telling us when to come, when to go, acting like a dictator.
He said he knows more than the doctors except for his oncologist and his nurse. SCARY! He decides what instructions he will follow and what he won't. When I tried to gently suggest something he would have NONE of it. I got yelled at as if I were a child. He only tries something if HE thinks of it. Then he wants all of us to help him. But we dare not suggest anything.
The irony of all this is that he doesn't really know what he's doing. He has all his doctors and nurses calling me so I can receive the information, then call him and interpret it for him. I don't mind doing this, but he doesn't even try.
I guess I am wondering how much of this is cancer talking and how much is just him. He has always been like this, but during his treatment he has become waaay worse.
I personally doubt that he is going to die of cancer. I think it will be of some other glitch, like not taking his heart medication for a week, or not filling an antibiotic for what was thought at the time to be pneumonia, or, who knows.
He has now begun to accuse his housekeeper of stealing things. Always those things have been found in the exact spot where HE left them. He pushes people away at exactly the time when he needs us most. We are all willing to be there for him, but he acts like a bully king, and it is most awful to be around him. His house is a house of fear and tension.
My husband told me this morning that I was talking in my sleep last night, something about feeling so much guilt. I don't remember that at all. So this is all penetrating even my subconscious, and it's hard to shake free of it. My husband told me, when we were there, after he heard my father verbally abusing me, that I am going to have to find some way of allowing him to die on his own terms. A good friend has said, "He's going to die the way he has lived--trying to be in control, and accepting feedback from no one." It's all really sad.
You can tell that I am in an emotional quandary, and I could really use some words of encouragement.
Thank you.
Maggie