Monday, May 21, 2012

Back to the bottom.

I woke up this morning and looked at my phone and there was the  email --  THE computer was finally being released.  YAY!

More good news is maybe coming.  I got an email last week saying "please call so-and-so about an opportunity for your sister."  Many conversations followed, and I'll hopefully have more to say later this week.  Good things on the horizon maybe.  YAY!

But Amy doesn't know about these things.  She'd be impatient for the computer... and it is her birthday present.  We need to know more about the opportunity before we let ourselves get excited about it.  And it wouldn't matter with the situation she's in.  She's always seeing good on the horizon, but so very rarely good right in front of her.

She's lonely.  She's mistreated.  Her house sucks on a good day.  She is grieving her mom.   Her phone stopped working this week.  Without communication, things have gone from bad to worse.

On Friday, a staff member refused to provide care to Amy, and that is a novel in and of itself.

On Sunday, the same caretaker who doesn't feel she can care for just Amy alone took the whole house to a nature center -- alone.  At some point Amy told her she was going off on her own to clear her head, and drove off down a trail.  Next think Amy new, the police were looking for her.   Amy "drove off" and got lost, according the caretaker.  Amy was told she was gone "for a long time." In 25 years, we have NEVER lost Amy.  She is tethered to 250 of pounds wheelchair that can only move so fast.  How far could she have gone?  How long could she have been?  Did the care-taker even look for her before she called the police?

Amy called to tell me about this -- from the house phone. She was under the impression she was in trouble. I tried to calm her.  I told here there was no way she was in trouble.  This was an overreaction and a misjudgment on the part of the caretaker.  Everything was ok.  No one thought she was bad.  And if she was in trouble, we'd deal with it.

Afterward, her staff accused her of lying.

She freaked out, started crying, she felt "the bomb inside about to go off".  And so the staff drove her down the hall to her room, and shut the door on her.  Driving Amy's chair without her consent is picking a person up and carrying them away.  Closing a door is the same as locking it.

Then, they threatened not to shower her if she didn't calm down.

You need to tell your Q (case manager) about this the next time you see her, I told her (I'm not a total asshole, btw, we are working really hard to transition away from me being Amy's bullhorn).  "I saw her today", says Amy, "but I didn't tell her".  Of course she didn't.  The staff will say, what?  None of that happened.

Ok, Amy.  We will write an email to your Q tomorrow, together.  Ok?  "Ok... but Al, I did lie."  What do you mean, you did lie? What did you lie about?  "I don't know, but they said I did."  But about what?  "I don't know, they didn't tell me."

Insert here me swearing, damn them all to hell.  And then we sang for a while to blow off steam and get the feeling of needing to cry out of the back of our throats.

"Al, I started reading A Prayer for Own Meany today." Oh, Amy, you are going to love it.  "I know I will, it reminds of me of Simon Birch*...  I don't deserve to be treated this way!  I have to get out of here!"  I know, babe, but don't go down this road again right now, it doesn't help you.  I'm really working hard.  I'm really trying to get you out.  "I know.  But I don't deserve this." I know.

*This is the same thing she told me the first time I tol her about the book.  Today I looked up Simon Birch.  It's a movie from 1998. based loosely (very loosely) on the last half of A Prayer for Ownen Meany and with a different ending.   If she can make these kind of connections from memory, think what she can do with a computer?


Monica said...

Your poor sister! I can't believe people get away with treating her like that. That's got to be legally wrong or something. I hope you can get her out of there and whatever the opportunity is you're talking about works out!

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