Sunday, May 06, 2007

Rehab Wants Him Out

The social worker from rehab called me on Friday afternoon saying that based on the doctor's opinion that there is no further treatment Jim can have on his brain tumors, our insurance company is going to stop paying for his stay in rehab.

They're going to have someone from Cabrini hospice come over to evaluate him, possibly tomorrow.

I also paid a visit to St. Rose's Home yesterday with my sister-in-law. It's a beautiful, quiet place overlooking the East River, in a part of the Lower East Side that's home to various middle- and lower-class housing projects that are morphing into million-dollar co-ops. The problem is, it's a small facility of only 35 beds and there's a waiting list in the men's ward. And it's not like I can grease a nun's palm and say, "Uh, Sister, there's a little something extra in this for you." So it may have to be Cabrini, which I have not seen. Or it may be Cabrini and then St. Rose's if he still is around to need a place.

Needless to say, Jim is the opposite of thrilled at this development. But the rehab has been the wrong place for him all along, except maybe for the first week. Then the disease started getting worse, his legs started getting weaker and he became too tired to do the exercises, and then he started catching every flu bug that runs rampant through your average health care institution. He needs supportive care more than he needs rehab, and a rehab is set up to get you on your feet and back home, and they don't have the staff with the skills needed for someone in Jim's condition.

"So now I'm never going to walk, is that it?"

"I don't know. Never hasn't happened."

"I'm never going to go home again, right?"

"I don't know."

"I'm going home. I'm going to lie down and close my eyes and die peacefully, tonight."

Hooray for magical thinking.

"Jim, if you went home you wouldn't just lie down and close your eyes and die. You know what would happen? First of all, you'd be in agony without all these medications."

"I don't have any pain."

"That's because you're on all those medications. And then...You know last night when you told me and Gilda that you heard wheezing in your chest and we went down the hall and got the nurse and you got oxygen and they checked your blood oxygen and gave you an ex-ray? If you were at home and said you had wheezing, I would have to make a snap decision whether to call 911 and have the paramedics take you to St. Vincents or just watch you all night to see if you developed pneumonia and died. I certainly wouldn't be able to get you oxygen and a blood monitor."

Not to mention the 50,000 other symptoms I would have to continually evaluate at home or from phone calls at work until I felt like a triage nurse in a big city emergency room, except it would be the same patient over and over every ten minutes and the stakes in being wrong would be more than just my job.

I feel responsible for him getting kicked out of rehab, since it was my idea to have the oncologist reevaluate him. I'm the one who said "What good is rehab when the cause of the disability isn't going to be treated and the symptoms will just get worse?" So now he won't walk again because of my big mouth.

But rehab as practiced in a rehab unit is for people who've had surgeries or accidents, like Governor Corzine, who practically became a human accordion. It's for otherwise healthy people who are expected to recover. It's not the type of physical therapy given to preserve whatever function a terminally ill person has left. So hospice probably is the best idea.

And I really wish the insurance company would stop screwing around with my sense of acceptance, or swear I'll turn around and go right back to "denial" and go shopping. So there.

So now he won't walk again because of my big mouth.

I hope you don't really believe that.

No, I really don't. Maybe some of his unreality is rubbing off on me, or I feel like a troublemaker right now for making the nursing home staff do their jobs.
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