Bill's PCP is a gerintologist - primarily because of his complicated medical history I feel very comfortable with him caring for my husband. The glitch is that when Bill goes to the hospital his doctor follows him through a system of "hospitalists" - a specialty where the physician works only in a hospital, following patients and communicating with their PCP. Bill's doctor doesn't make rounds in the hospital since he rounds in nursing facilities.

I'd been very adament about one particular hospitalist NOT following Bill because of a very bad experience we had with him during Bill's 2004 stroke. I'll not go into it here, but it involved a nasty encounter at ER. Our wishes had been respected. Since the hospitalists work a seven day rotation and Bill was in the hospital 15 days it went like this - #1, four days, #2, seven days, #3, four days. #2 doctor told us the name of #3 and I felt comfortable because he had followed Bill before, but guess who came to rounds...the doc I had explicitely told the doctor before that I did not want covering my husband's care...I was speechless, however, I summoned my courage and confronted the doctor about how I felt. Of course, he couldn't remember any of the ER situation and promised to look into it and get back to me so we could discuss it further. He did scramble to the computer where another doctor had admitted Bill to ER and discharged him so he felt I must have made a mistake.

During doctor #2's coverage arrangements began to be made for skilled nursing. Bill would be receiving PT, OT and ST for swallowing issues (he was diagnosed with silent asperation). He was placed on nectar thick liquids. OK - seems reasonable??

The orders written by doc #3 did not call for ST and he ordered honey thickness liquids. I had a devil of a time getting the liquids changed because a spouse doesn't know what the doc does...I waited and waited for the ST to begin...it hadn't been ordered.

Yesterday morning I received a call from the social worker advising me that Bill was being discharged because PT had determined he was at his base line. If I wanted him to stay I should bring a check for X dollars that afternoon before 4 p.m. At this point I responded with - why no team meeting like I was told would take place? Well - I did meet with them yesterday afternoon. WITH the social worker. Yes, the PT had determined he was at his baseline, however, his spasticity in his right leg and arm have increased dramatically over the week-end and she is having second thoughts. The OT was there and she will not be ready to release him until next week. They had no idea about the swallowing issues, and when I mentioned it both the OT and PT looked at each other and said they had no idea and that silent asperating is a very serious condition. Meanwhile the social worker sat looking like a deer facing my high beam lights.

I explained my concern about the spasticity because the only time he has experienced it this way was right before he went to the hospital with anemia. I was instructed to speak to a nurse about my concerns. When I stopped by the nurse was in a meeting, but the ward secretary promised she'd give her the message. After an hour I went to the desk and the nurse (whom I'd not met yet) was there, and looking at her name tag and in response to her query about whether she could help me I told her who I was and that I had been directed to speak with her about some concerns about Bill's condition. The secretary piped up from the background, "oh yeah, I was supposed to tell you....but you just got out of the meeting....." Anyway, another hour passed and she came in the room saying she'd asked the director and assistant director of nursing to stop by since she had some meds she HAD to get out but she guessed they were too busy writing notes about what the nurses were to do than to get in to see me. When I told her my concerns she said the OT had already filled her in. She said he'd had blood drawn yesterday already. I asked what it had been drawn for - she didn't know. I suggested it may have been for his INR/PT, and oh yes, that was what it was for. Then I requested she contact the doctor for an order for another CBC.......After all this (and alot of chit chat) she did so and came back to tell us the doctor had ordered some other tests as well.

Whew - this has been long...but I needed to get it out and this is where I can do that. I get so tired of having to be so vigilent in an environment I have always expected to be competent. If the caregiver doesn't constantly check on things what would happen to the survivor? I'm frustrated that a system can call and tell me my husband is going to be discharged when one of the therapy disciplines has intentions of discharge, while another hasn't and yet another hasn't been ordered. I will continue....my Bill may not be home with me right now, but my caregiving is not over, it has just taken a little detour. And that's the lesson I'm learning in all this. We may feel guilty at the thought of our loved one not being in our home, but we are still the primary caregiver...We care the very most about the well-being of our beloved and we must not forget that, whether they are home, in the hospital or in a skilled-nursing facility. I am my beloved's the primary caregiver.