Tuesday, August 14, 2012

Urine for a bad time.

Ok, that has nothing to do with this post.  But it is something Amy told me as we were using the restroom one day.

Knock, knock.
Urine for a bad time.

You can tell we're sisters.


Amy called me after work and she was upset, but keeping it reigned in.  Are there updates from the other house, she asked.  You have to get me out of here.

Her chair as supposed to be fixed today, and she can home from work to find out it wasn't.  Then she asked a staff member if it was fixed about five times, at which point the staff member told her she wasn't going to answer her anymore. And a bunch of other things happened, but she was insisting on whispering because staff get mad and mean to her if she tells people about what goes on in the house, so I have no idea what she said, except that staff say they hear her tell me that staff suck.  I never said that.  I know, I said.  I say that.

She was so frustrated, and understandably, and I begged her to keep with the program and just keep talking the stress through.  I'm trying, she said, and she did.

We talked about how she has to accept that there is nothing that we can do about her current situation.  Nothing.  Nearly three years of emails and meetings requesting respectful care that meets the minimum care obligations set by the state.  We have to accept that the agency is not going to change.  We talked about how she has to try to let it role off of her and not let it eat at her, and not shape how she sees and interacts with the world.  You can't do anything about what happens at your house, Am.  The only thing you can control is you.  It's not right, and it's not fair, and I am working so hard to get you out of there, but in the mean time, the only thing you can control is you.

A few times she said "I should let you go", but I kept her on the line till she had to go, to try to eat up as much of that frustrating time as I could.

She called me again just before bed:

Guess what?  My chair is fixed.
What?!  That's awesome.
Amy, that is really great! So when did it get fixed?  What happened?
So earlier the staff member said it wasn't fixed but she was joking. [Long silence.]
[awkwardly] Oh, ha, uh, that's funny.  You don't really get that kind of, uh, humor...
Yeah... They didn't tell me till I was about to get in bed.
Wait, what? 
They didn't tell me till I was about to get in bed.
WAIT, was this so they wouldn't have to transfer you?  
That's what I'm thinking.
But they had to transfer you to use the restroom after work anyway.  Why wouldn't they have transfered you into the power chair?  
That's what I'm wondering.... I'm mad.
Don't be mad.  
I'm frustrated, I'm irked.
Yeah.  That sounds right.  Irked.  PO'd.  

So, let me just get this of my chest: OMFG.  No one has the right to deny Amy her power chair.  They left her "legless" in her bedroom for an extra five hours.  And uhhhh, a joke?  You mean a lie?  Teasing?  You mean withholding?


Regarding Amy's emotional mountain climbing and my constant pep talking: there was this episode of Mad About You where you see that Paul and Jamie's therapist is kind of bonkers and also goes to a therapist (omg, I'm referencing Mad About You).  I feel like that.  I feel like I'm coaching her to be a person I'm not even prepared to be.  On the other hand, I think we are climbing this mountain together, accepting things as they are... which, as I'd say to Amy, doesn't mean liking it, being ok with it and doesn't make it right, but you still just have to let it roll off.  God, I can feel the serenity prayer right around the corner.

I always had a problem with the the idea of "accept the things I cannot change", because, what?  Just because I can't change something doesn't mean I'm going to say oh, ok, sure, my mom is dead, NOT A PROBLEM, Life.  No worries.  

It means that that there are two columns.  Things I can change, things I can't.  I need to put the shit I can't change in the "can't change" column, and I need to keep it there, and stop coming back around to thinking I can change those things.  Doesn't mean I like it, doesn't make it right.  That I can do. That I can try to do.  

Last thing .  I have given up on Amy's house, and refuse to give them my mental and emotional energy.  I'm working on getting her out of there, and improving her life in other ways instead.  I'll be honest, I have no idea what I'll do if she doesn't get in to the house she's been visiting.  Let's not worry about that for now.


Monica said...

When do you find out about the new house? I don't know how you guy deal with this. I sit here, in a different country, and read this and I'm am SO angry for both of you. And I don't have to live with it day in and day out, but it makes me sick to my stomach to think that Amy is being treated like that, and even more so, that there are people who would treat her like that. You're doing a good job and I agree that focusing your energy on something that will make a difference is a great idea. I'm so sorry you have to deal with all of this.

Allison said...

We are chipping away at the new house issue. She'll do another few visits, and they'll keep working on figuring out how to renovate to accomodate her. I mean, it should work out... unless it doesn't. It didn't with the house last summer.

Amy endures some real BS. I'm so proud of the way she's reigning it in and staying in range of sane. I keep telling her: anyone can be patient and let things roll of them when things are good. It's the people who can do that when things are bad who are the awesome ones. You can do this! Think how great you'll be when things are good if you can be this great now!

Thanks for all your comments, Monica. It means a lot.

Also, it seems like yesterday we were sitting in choir. Holy moly, it's been 15 years.

Anonymous said...

It really is not acceptable that the house cares for her in this manner Al..and I'd be more than willing and would want to get involved in dealing with the staff there---totally your call. Pam and I will be there next week for a visit with Amy...can you give me some key names that I should tune into while I'm there please? Continue being strong. There are things one can't do...but OH so much one CAN do!!! Let Pam and I help achieve the CAN!!! ~~ Sheila

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