This is a very raw entry from my personal journal, written two weeks after Terry came home from trauma rehab in October of 2006. The house was ready, modification had been made and everything was supposed to be rosy. It’s important for you to know that in Washington State there is NO place that can help people with brain trauma or their families, funding was eliminated a few years ago and everyone is pretty much left to sink or swim on their own. These patients are sent home with hopeful families, a spouse, parents, children, who will be their caregivers. None of us has a single ounce of preparation for what we will have to face and how to cope. Insurance says that you cannot take a brain injured person to the grocery store or out of the house or you’ll lose the very small amount of nursing help provided for in the fine print. You can’t leave them alone either, not pretty from standing in the middle looking out.
My private journal was a place where I felt free to just put it out there. If you are not comfortable reading it–then please don’t. Thankfully, things have changed since this was written from my personal front step outside the door to hell.
I think I have reached far into this unending nightmare now; I’m at that magic point where the friends who rushed to man the gates when they heard the terrible news have evaporated. They have given their all and now they are gone back to their tidy–tidier than mine–lives and I am left alone and struggling to cope. Today I was cleaning the garage and rearranging stuff to make room for more storage of Terry’s stuff. I ran up the garage door and fired up my bike just to hear it run.
I sat there on that bike in my pajamas, barefooted, looking out at the pouring rain and it was all I could do to get back off the bike and turn it off. I want to escape; I want his horrible nightmare to end. I have begun to hate/loathe and despise Terry and his incessant energy sucking drain on us.
He cannot be left alone for five seconds. He will be drinking soap or falling down or pulling the clock out of the wall or putting on all the clothes in MY drawers in layers on him. He cannot comprehend wait. Today he wanted to go for a walk, I promised him as soon as I got the car unloaded we could go. He has no sense of time or decorum and he came outside in his pajamas with his sweatshirt over his rain coat and wanted to go NOW. He could see I was struggling to unload the car. I asked him to give me just a few minutes and we’d go. I even told him walk to the end of the driveway and COME BACK if you need to move. I looked up and he was gone. I jumped in the car and caught up with him two blocks away, not understanding at all why I wanted to kill him and with no idea where he was.
He has been impossible today. Needy, whining, not able to comprehend anything. I could go into chapter and endless verse but it never changes. I don’t CARE if he is brain damaged. At this point, so am I and there is NO ONE in the universe who can help. I don’t like him, I don’t want to be near him or around him and yet I am forced to be kind, gentle, and nurturing nonstop. He goes to bed at 8 p.m. and gets up every three minutes all night long. Sits up, walks out of the room, puts on my clothes, complains about the television even if it is off, pees in the hall closet or the clothes hamper if I can’t catch him fast enough, you name it.
Today he went into my studio and tried climbing the ladder into the loft. I blew, I’m ashamed of myself, but I absolutely blew sky high. I told him for the 357th time that he had to wait for usto help him because he has fallen down three times in two days, and we want him to have his freedom, but he needs to understand he has no balance and no real comprehension. I told him to get out of my studio that it was the last place I had that was my own and that I wanted it that way for my own sanity.
I cannot even have a shower alone. I can’t leave him for that long. I eat meals by wolfing down leftovers hanging over the sink.
Corey came to help, bless his heart, but he brought Alex,and Terry cannot tolerate the stimulation of one person let alone a small child. Shayne brings Heather, Penny brings Bob. I need help, but I need ONE person at a time not two, and no one understands that. I feel so bad about trying to explain, I’m ready to lie down in the rain and just give up. I’m sure I’ll soldier on tomorrow with all the therapists and the mental health nurse and the doctor appointments and the insurance forms and Terry needing the care of a two year old. I hate my life.
I absolutely hate my life. I hate that my husband was so personally irresponsible that he got on a bike at night in the middle of deer country and rode at 70 mph into a deer. I don’t think my marriage is going to survive all this, at four years its cracking under the strain. I hate being responsible and not being able to lay down this burden for a single day or a single hour.