I Want Jim Home and Jim Wants to Come Home

Jim and I met with his case manager today. This woman was completely unempathetic to the feelings Jim and I are having.

Her point was that Jim was brought into Select to rehab to get him well enough to go home. We completely agreed with that. But we were hoping for more.

We expressed concerns that we are scared and frustrated because we don't understand the nature of his disease, what his current condition is, and what his prognosis is. She wouldn't even address those concerns.

We said we thought it was the DR's place to talk with us about those things, but that he doesn't spend more than a couple of minutes a day with Jim, and that I have never talked with him but once. She said that with the DR's patient load of 30, we couldn't expect anything more than that from him.

We told her that we wanted to understand the nature of "secondary complications" Jim is facing (like sepsis), so that we could treat him better at home so that he wouldn't end up back in ICU with a serious condition. She scoffed that we were unaware than any organ failure could lead to sepsis.

We asked her whether she could direct us to a support group about liver failure so that we could learn more. She said that wasn't her role.

We told her we wanted to understand whether we were facing more nursing home time or perhaps hospice or whether there was a better home health agency than we had used before. Again, not her role. Her role is to make sure he gets rehabbed and back home. Those were the "conditions" under which he was accepted into the hospital and all she is concerned with.

She didn't even say goodbye when she left the room. She seemed to see the conversation as confrontational. I guess it was, given she could offer nothing in the way of relief.

Jim and I just sat there stunned. I came home to search the Internet for resources for his care. But I ran into the problems with Julie and Smokey on the FDMB, and have done little other than watch that problem progress all afternoon.

Jim and I agreed that I should call and try to talk with his outside GI. That GI doesn't have privileges at this hospital, but maybe we can get some guidance.

After my observation yesterday about Jim's mental status and lack of bowel movements, the DR increased Jim's lactulose and his mind was more clear today.

Radiation 14 tomorrow. That will be 1/2 way through.