Can I have my brother please? Please?

New Home is starting to really get on my bad side. That’s not a good side to be on (just ask my hubby!) . :-)

We got through the medication issues and New Home seems to be giving Robert his medicine when he’s supposed to have it. I haven’t seen the extreme seizure activity that he had and that’s the best way of confirming what they’re telling me.

I also think I have finally convinced them to change his bed everyday and to make sure he puts his wet pajamas in the laundry and not back in the drawer. I thought I was doing them a favor by telling them BEFORE HE MOVED IN that he is incontinent and wets through his “brief” Every. Single. Night. I explained BEFORE HE MOVED IN that he tends to think since wet (um, urine soaked) clothes will dry by the next time he needs them, they don’t need to be washed. I didn’t just tell one person this, I covered my bases and told the Regional Center counselor, the Director of the residential care program, the house manager of Robert’s New House and a couple of aides.

A few times when I visited, his bed was wet. I changed his bed and changed the pads. I put an extra mattress protector cover on his bed. I checked his drawers and pulled out the wet and/or smelly pajamas. One weekend morning I was visiting and an Aide was ready to do Robert’s laundry. I pulled all the pajamas out of the drawer and put them in the laundry basket and explained that Robert puts wet clothes back in his drawer. The Aide told me that was good information to know.

Yes, yes it is. Gee, I really should have told someone about this habit of his.

A few days later, I get a phone call telling me that they’re trying to track down the source of urine smell in Robert’s room. Hmmm . . . I don’t know. . . maybe CHECK THE FREAKING DRAWER???

I think they’ve caught on to the wet sheets and pajamas now.

My latest beef (and, really, I am not that difficult to please) . . . okay, I’ll wait for my hubby to stop laughing . . . Anyway, my latest beef is that it is so difficult to pick Robert up and take him out of the home for a few hours. Last weekend, I called New Home in the morning and told both Robert and an Aide that Robert would be leaving after lunch and would be having dinner out but would be back before bedtime. I came by after lunch to pick up Robert and I picked up the necessary medications. I returned Robert just before bedtime (it was later than I had expected but this was the day Rob had all that seizure activity so I wanted to keep an eye on him as long as possible).

A few days later the House Manager told me that I need to notify her when I take Robert out of the house. Well, okay, but I did tell someone that I was taking him (and even if I hadn’t, I’m pretty sure someone would notice us walking out the door – the boy doesn’t walk that fast). “You need to tell me.” I need to call you when you are not at the house if I want to take Robert out of the house? “Yes. But it’s no problem to take him. You just have to tell me first. But it’s not a problem.”

Okay. I can follow rules. Tell me the rules and I’ll be happy to follow them (well, they have to be reasonable, of course).

Yesterday, I called to tell Robert that I would take him out for a couple of hours. He wasn’t going to miss a meal at New Home but I wanted to get him out for a while. He hasn’t started a day program yet and he’s bored. It’s not good for him to sit all day long watching television. He needs to do something. I called the House Manager and left her a message on her cell phone. I called New House and told an Aide my plans for the afternoon. “You’re taking Robert out? Um . . .you can’t do that.”

I can’t have my brother? Really?

Breathe. Breathe. Breathe.

My patience was definitely wearing thin but I like this Aide and I could tell she was just “following orders.”

I explained that I had called the House Manager and left her a message. She audibly sighed with relief but said she would have to call her too. And someone else (the co-House Manager?). That’s fine, call whoever you need to but I’ll be there in 30 minutes and we will be going out for a few hours.

Goodness, I think I would have had an easier time getting a few hours with Charles Manson.

I arrived and was “allowed” to take Robert out. We left and went shopping for slipper socks (he’s missing one – not one pair – and it’s driving him crazy) and we got his new watch fitted properly. He enjoyed himself and I brought him back to New House in one piece.

We obviously have a few bugs to work out still . . .