Gurgle

I saw my brother yesterday.  I stopped by to take him out for breakfast before I left for an overnight weekend with friends of mine at Starved Rock, an Illinois State Par.  We have been doing this for more than 20 years.  We go with about 10-15 families.  This is the first year we have gone without kids and I was feeling a bit melancholy. 

Truthfully, I really didn't feel like going to see my brother.  I have a cold and my head is stuffed and I was tired, and it would have been better to sleep in, not expose my cold to him, and not go.  But I didn't want to spend my day off doing it (Monday is a holiday), and he looked so happy when I mentioned to him that I would stop off to see him before I left for the weekend, so I went.

It was one of the shorter breakfasts.  The waitress was extremely efficient, and the whole thing from door to door, took about 45 minutes.  No big deal.

My brother mentioned to me that one patient had died (he didn't seem to know him, but it was someone on his floor) and one patient had gone by ambulance to the hospital.  This was the first time he had mentioned something like that since he has been at the new nursing home. It's hard to tell how this effects him because of his autism, he is rarely going to identify any real sadness.

But it hit me kind of hard.  As I dropped him off, I felt depressed that he is stuck inside this building so much, and the except for a few excursions during the year, I am the only person (or my husband) that takes him out of the building.  That's no way to live.  And I also thought about how hard it is to entertain him because he can barely walk, his mobility is so limited, and he can't access so many buildings easily.  That's depressing.

This week I was also informed that his lungs had been checked out and they were clear.  But it is pretty obvious he has a permanent gurgle.  I think that's because his heart is too weak to clear his lungs completely.                                                    

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.

new years and emotional distance

I called up my brother on New Years to wish him a happy new years.  My husband, daughter, and I had taken him out for New Years Eve lunch and it had been a pleasant experience.  I really appreciate it when someone else in my family deals with his walker and folds it up and puts it in the car trunk.  I know it's a little deal, but it just feels so luxurious not to have to do it, it becomes much less of a burden to take him out.  It's just psychological.

Anyhow, when he came to the phone he was his usual self.  Barely a hello, just pretty much an ok, thanks for calling and then he hung up.  I remarked to my husband that it would be nice once and a while to actually have a real conversation with him on the phone.  My husband remarked that it some ways it makes it easier to deal with him because he keeps his emotional distance.  I believe this is part of his autism.  By not connecting emotionally, it's easier not to get sucked into his problems.  Actually he never really talks about having any problems at all any more.  He used to talk about his need to live with "regular" people, not people with developmental disabilities.  But now that he is, he doesn't seem to have very many issues at all.  It's just kind of a flatness.  I suppose I am used to it, but as I said, it would be nice if the relationship wasn't just all one way all the time. 

I do get some things out of the relationship and I do love him.  But it's not the same as loving someone without autism.  It's really very bizarre.