Turtle, my youngest sister, who has Prader-Willi Syndrome, has gone off the deep end in the last few days. She has tried to kill herself with a vegetable peeler. (FYI: You can't scrape yourself to death or commit hara-kiri with the blunt end, which she has now proven). She says she "doesn't feel right". When pressed, she can't describe what that means. She has an appointment with her psychiatrist in 10 days. She knows this. They have tried to move the appointment up, and are on the cancellation list. Turtle says she can't wait to see a doctor. She's still threatening with the vegetable peeler or worse (she's mentioned walking into traffic) so the staff at her group home took her to the ER to get a psych assessment. The social worker at the ER tried 5 different hospitals. Three won't take her due to her low IQ (no program for IDD individuals). The other 2 won't take her because they don't accept Medicaid. She has no other insurance. So now we are working with another agency to see if we can get her in to see a doctor somewhere before her scheduled appointment in 10 days.
She was released from the ER last night and went home to sleep. This morning, I checked on her. The conversation started with "How are you feeling?" Her response, "Not good." Then it went on from there....
Does your stomach hurt? no.
Do you have a headache? no.
Do you feel sad? no.
Is someone being mean to you? no.
Are you afraid of something? no.
Why are you having a bad morning? I don't want to go to day hab.
Why not? It's boring.
As it turns out, she is manipulating everyone because she is bored during the day. In her crazy mind, if she faked suicide, they would take her to the hospital, admit her, and then she wouldn't have to go to day hab. Who does that?
There is a program in place for her. She has a job and exercise routine every day. She's not sitting in a chair, drugged, lonely or staring at a wall all day. She has friends, a schedule, chores, and sometimes volunteers in the community. Could she do more? Probably. But she can't get a job outside the sheltered workshop until she proves she is emotionally stable. Faking suicide does not equal emotionally stable.
She's smart enough to work out what she wants, no matter the inconvenience it causes everyone around her, but can't be left alone at all because she will gorge herself on diet coke and what ever else she can find to eat. To rule out any true medical issue, she is still getting bloodwork, her hormones tested and possibly a sleep study. In the meantime, she's happy to be the center of attention and let us all jump through hoops while she contemplates how she's going to get exactly what she wants.
This is the most frustrating part of PWS. I can't tell if PWS is making her do these things, or if she's actually a spoiled brat. This is total toddler type behavior - getting what you want at any cost. She can be super sweet and helpful, when it pleases her. So is that her true personality? I would like to think so. Though I'm never really 100% sure. Manipulative behavior is an evil thing. She's like the frenemy I can't walk away from.
I really hope the root causes for her behaviors at the moment are medical. If that's true, she can be treated. Otherwise, I'm afraid my sister is just a brat.
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