Good News, Bad News

Jim’s been home one week.

We saw Jim’s GI yesterday. Friends helped us get him out of the house and I got him back in myself.

The GI seemed surprised to see Jim still alive. (Nothing said; just the look and tone.) The good news: Jim’s liver values are surprisingly good and that the state of Jim’s kidneys and other biological function are “not too bad.” The bad news: Jim is not sick enough to qualify for a transplant.

I tried to talk Jim into doing all the advance stuff one must do to determine transplant candidacy—heart stress test, pulmonary function test, interview with the transplant team and psychologist, and so forth—so that once he does get sick enough to qualify that those “to dos” are already “to done.” He refused. He seems to want to be content with the statement that a transplant is not in his future.

The DR is weaning Jim off prednisone, and is putting him on prophylactic antibiotics for the rest of his life. This is because Jim, having had one bout of spontaneous bacterial peritonitis, is prone to having repeat bouts. The DR said the mortality rate for that peritonitis is 50%, so that Jim was very lucky on the first one but we really need to try to avoid recurrences.

A return visit to the GI in 5 weeks.

Jim has a great in-home physical therapist. Jim is working really hard on his exercises, and the therapist is training him on steps. It is possible Jim may regain some independence, but right now his biggest challenge is his mental confusion. We have had two horrible nights in a row as Jim is incapable of taking direction when he is half asleep and needs to use the bedside commode. Luckily, he can sleep in and rest, but I have to get up at 6 to get to radiation. But only two more treatments.

At the insistence of Deb (Gizmo) and Robin (Peri) I called a non-insurance home health care provider today. We are working on getting a sitter in here 3 nights a week so that I can get some rest. It’s not cheap, but Jim has agreed to pay. If Jim improves, we can cut back or curtail later. The sitter will do incontinence care, personal care, light housekeeping, and meal prep. During the night, I can have him or her prep some meals in advance for Jim, like cleaning and foil wrapping potatoes for baking, making tuna salad and Jello, washing vegetables, and making fresh fruit salad. Laundry. Cleaning the night’s dishes. Mopping the kitchen floor. Feeding the hungry critters at 3am.

We may get our first sitter tomorrow night. Thank you Deb and Robin. I owe you big time for pushing me. The insurance-based home health care just isn’t cutting it. We might get an aide tomorrow, and she won’t do anything but bathe Jim and make his bed.

The baby monitor should get here soon, I hope. I ordered one from Target. I need it during the day and the sitter will need it at night.

The PT wants Jim and me to go up and down the stairs tomorrow. So I told Jim he would have lunch at the kitchen table. He loves the kitchen, so that will be special for him. It’s been over 3 months since he saw it.

I talked today with Medicare and Social Security. I need Jim to sign forms that say it’s OK for me to talk with them on his account. What a bureaucratic nightmare. I’m sure there are other places I need to talk to—his financial institutions and pension payers. I’ll get to that as the situation comes up. I almost couldn’t get Medicare to talk with me because Jim could not tell the guy his zip code. The guy finally accepted me telling Jim the numbers one by one, and Jim repeating them. How bogus is that?

I cancelled my therapy yesterday and tomorrow, but I am determined to go on Friday. I may need to ask a friend to sit, but I need to go. After the home health schedule gets a little more settled, I can schedule my therapy on top of their times, so that Jim is not alone too long.