Tuesday, March 3, 2009

An Investigation

I was sitting in my recliner, finalizing this morning's funeral service, when the phone rang. It was Daughter's Case Manager (CM) from the workshop. She had heard that Daughter was in the hospital and wanted to talk to me. I put her off until after the funeral, but in our brief conversation she told me that there would need to be an investigation into Daughter's insulin overdose, since she did it at the workshop (with an insulin pen she wasn't supposed to have at the workshop).
I had to pause and pray and ask a colleague for prayers so I could put all of that out of my mind until after the funeral. The funeral went well, and I have spent time this afternoon on the phone. The insurance company has given authorization for Daughter to remain in the hospital through Friday. CM now knows the whole sordid tale. There will be an investigation, and law enforcement will be notified as well.
Here's my issue with all of this. I knew Daughter was taking an insulin pen to the workshop, and I knew she wasn't supposed to carry one with her. I have often felt like the workshop and I are working at cross purposes. I'm encouraging her to take responsibility for her own health, they're telling her she's complicated and doesn't understand her own disease. I'm encouraging her to keep going even when she doesn't feel good, they're allowing her to stop work anytime she wants to for whatever reason. I'm telling that diabetes is her disease and her diabetes care is a normal part of her day and nothing to hide or be ashamed of, and they are telling her that she can't keep her meter with her and that she can't test unless there is a supervisor standing over her to make sure she's doing it right.
When she was in school, she carried all of her supplies with her at all times, and tested and took insulin wherever and whenever she needed to. When she got to the workshop they told her that was too dangerous and her disease was too complicated for her to treat on her own. Her doctor and I tell her it's her disease and she needs to speak up for herself and let people know when they're doing something wrong, they tell her to shut up because she doesn't know what she's talking about.
I think you're beginning to see the pattern. Psychiatrist told me to move her to a different workshop. Here in rural America, we're lucky to have a program that's only 12 miles away. There are no other options for her.
An investigation will reveal that I knew she was breaking the rules, and didn't stop her. CM tried to play it down, but I'm not looking forward to it. I guess the thing that bothers me most is that Daughter has proved them right. She can't be trusted to manage her own disease. Our whole life is going to change, because I will have to lock up all her insulin and all of our medications. I'm going to be wearing keys around my neck. I'm no longer going to be able to put the responsibility on her. I'm going to have to dial up every insulin dose and either inject it myself or watch her inject it. I'm going to have to personally give her the proper pills, instead of checking the pill box to make sure she's taken them. Every step we had taken toward helping her be responsible and independent has been erased by one shot.
Every hope I had of someday having more freedom has vanished. When I talked to Therapist about the whole situation on Saturday, Therapist talked about how challenging this would make it to find an alternative living situation for her. I had plans to go to a conference March 16-18. I had arranged respite for Daughter. I find myself wondering if it's a good idea to go now. I don't have any answers. I do have lots of questions. I do know my life has become much more complicated. I do know that I am not looking forward to the investigation.

1 comment:

Pete and Debora said...

Hi, I can so relate.
She did prove them right. But you did the right thing, I now that sounds twisted, as only a rad mom can understand.

You had to give this responsibility to her, to try, because in the end it IS her responsibility. No matter what you do she will still have control, i think thats the most frustrating thing of all.

Even with all the meds locked up and monitored there is always food avail and she is the one that controls what goes into her mouth.

Sigh, I so totally get the feeling of the door to your possible freedom looking closed.

But maybe its just a screen door, not a vault??

I am on my way to post at adsg.