heavy breathing and a surprise

Last Saturday, I noticed that my brother had a cold again, and after just a few steps, he was breathing pretty heavily.  I dropped him back off, resolving to call the nurses station, and then felt better of it, got out of my car, and went back up to the seventh floor, where he lives.  I asked the nurse to listen to his lungs.  She took his oxygen levels and they were pretty good, 99%, which I found pretty strange, given how his breathing had been so laborious. 

Then an odd thing happened. He whispered to her to tell me about his autism.  I had no idea what he was talking about, and then he mentioned he was no longer taking "the happy pills".  He was referring to a pediatric dose of Risperdol.  A doctor had put him on the medication after his roommate of 30 years passed away.  He had suffered with anger management problems all his life and it got really bad.  The Risperdol really helped.  Frankly, I don't know what I would have done without it, I probably couldn't have gotten placement for him anywhere.  It was odd how such a small dose could have such a big effect.  As his heart problems got worse, I worried that the Risperdol was causing an adverse health effect, but all his doctors assured me that it was such a small dose and not to worry.

So I was really surprised to hear that the nursing home psychiatrist had taken him off, and actually pretty angry myself that no on had bothered to tell me.  But it turns out he has been off of it for more than a month, and he doesn't seem that much worse for wear.  I had noticed he was not as mellow and jolly as usual, but I had figured that was because of the holidays.  Both he and my father had gotten very depressed during the holidays since my mother died.  It's going to be interesting to see if there are any mood changes.

I am hoping that his living conditions have changed and that his major sources of frustration at work and living independently are no longer a factor.  But I plan to call the psychiatrist and talk about it tomorrow.  I can't believe there was no consultation with the family on this decision.  I know the nurse assumed that the prior nursing home had been the one to initiate treatment because he must "have been a problem". 

The nurse asked me if I expected to be informed of every change in medication.  Frankly, I don't see why not.  A doctor is supposed to tell you when medication is changed, and since my brother can't handle it, I don't see why I shouldn't be informed so I can advocate for him.  It would be very unlikely I would challenge anything a doctor decided, but I still believe in informed consent.  I plan to ask several of my doctor friends what they think about all this.

I also need to check in on his breathing.  I plan to visit the nursing home a day earlier than I usually do.