Oct. 21st, 2006 |
The email update list who wants to know how Terry is doing gets the sanitized version; my journal gets the director’s cut–the down and dirty ugly parts of brain injury. Frontal lobe injuries ruin the ability to control impulse, organize, make any kind of judgment or decision and they release all the anger usually kept under control.
T. cannot behave appropriately–as in identify the toilet, not eat a whole sausage patty in one bite–or not reach into a pot of boiling water to get at the rice in the pot. He has to be watched every second and he hates it on some level. I’m exhausted and scared and just stunned by the consequences of his decision to ride his bike at night.
No one could have predicted it, but I seem to be the one paying the piper and I am starting to wear out and be really angry at the world of insurance and the medical community. I’m also angry with T. and frustrated because he cannot understand any of this so I stuff it down and don’t take it out on him.
They scrape someone off the street, save their lives and dump them back into the world whether they are ready or not. With traumatic brain injury, TBI, as the cognoscenti call it, they are seldom ready. The TBI world is populated by an infinite variety of symptoms, causes and effects. Each person is different in their reaction to treatment, medication, and general recovery rate and degree of recovery. No one has any answers and they gently skirt the truth–which is:
a)we don’t have a freaking clue
b)frontal lobe injuries are the worst with the longest and lowest recovery
There is nothing in place to support the people stuck with trying to cope with what amounts to a giant brain injured two year old. Everyone has an opinion but I don’t see anyone here at 2:00 a.m. when I’m trying to talk him in off a ledge and getting nowhere. Fortunately, we have no ledges in reality; but last night he did go outside in the rain barefoot and mostly naked. The yard is fenced and we put locks on the gates or the cops would be here by now.
Although I am the only caregiver–another word I have come to hate–I still have to work to keep a roof over our heads and be able to pay the bills. How can I do this when I watch him all day and all night? Even if I had day help, he doesn’t rest at night so when am I supposed to rest? I am just beat today,napping on tenterhooks and able to flame to full consciousness in a split second when he sits up and gets ready to move. I try to just follow him and not intercede unless he’s doing something dangerous that could result in harm.
I really don’t think he will ever return to work. I am hoping that his care will be paid for and that he can stay home. When he does well he does really well, just not for very long. What is happening now is what I was scared of all along. He does not remember any one from the last two months– nor does he even know what town he is in most of the time. His health is improving and we are going to the doctor next week to ask about his meds and show the doctor I do need help. I will ask the doctor how on earth we can change any of this behavior.
The therapists finally all showed up Friday after I had a fit because they hadn’t even called. They seem to have some ideas and are going to work with him. This will be good I think. I keep expecting the magic bullet. The thing that makes it click. I want to see him realize with horror that he crashed his bike. Not just take it in and keep going, like I told him we were having pizza for dinner. That will probably never happen.
I got hold of the disability board yesterday and asked them what they needed to give me what I need. I have to present all this stuff as medically necessary and come up with costs etc,. to present to them–and watch Terry at the same time. SSN has to to get filed for, but that’s an exercise in stupidity as he doesn’t have social security because he was a fire fighter and didn’t pay into it. I really cannot afford to hire a caregiver right now–especially one that I have to come in and intercede for every ten minutes. Heather is willing but she cannot handle him in any way. he doesn’t listen or respond to her so I cannot use her help. I may wind up having to hire a big strong guy to hang out with him and figure out how to share nights.
I want to explore adult homes for him, might be the best option at present. I need to document the true weirdnesses but right this minute I think I’m too tired…..