Tag Archives: traumatic brain injury caregiver blog

TBI: End of October, Crabby Day

Out of Order–October 2006.

I’m so damned tired. I’m trying to finish tiling the new shower, no bath in four days except a spit bath. I have T. home now and although he’s marginally better if I turn my back he’s doing something–like dismantling the cd player to turn it off. Wandering outside to pee on my pet clematis. Why couldn’t he just whiz on the grass like a regular guy?

I find myself angry with him when he does things like a stubborn five year old. He: “Go inside I want to lock this door.” Me:”No, I need this back door unlocked so I can get to my studio.” I step through inside door and he locks it with the little button thingie although I showed him it is a double key deadbolt lock. I unlocked it as soon as he moved away and then went and got the key and really locked it. It’s hard to not get aggravated. He just takes so much attention and he demands that we turn the t.v. off and lights off etc. as soon as it gets dark. It’s hard to explain to him that we live here too and he doesn’t get to make all the rules.  Really, television is fine at 8 p.m.

He is being really rude to Torin on the verge of nastiness. Its like with the brain governor off the real Terry is showing through, well not the real Terry but a facet of him that is usually under better control. I don’t like this guy much and I fear by the time he heals I will be so finished with him I’ll want him gone. Then he turns sweet and lost and I see the man I know. I think I’m just beyond exhausted at this point.

The shower has turned into the biggest thing I ever tried to do. It’s like I never get time to quite finish it off with watching T. out of one eye at all times.  I’m hoping we qualify for some home health care under our insurance. Kicker is it has to be an LPN or RN. The folks are coming on Thursday to assess him. I have to have time to work and it is not happening for me now. My boss is wonderful but I’m starting to worry–and Terry doesn’t respond well to some people like S. and H. He just turns into a total ass around them and although H. will happily help we can’t really use her because he can’t stand her.

I’m selfishly happy to have him home though, because now people like his vampiric ex wife  and ex-friends can’t show up to dine on our grief and pain. It really annoyed me that these people who were completely nasty, evil and rude to Terry when he and She split up suddenly are just dying to seem like they give a shit. Give me a break–and his parents just driving up and dropping in on him was hard. They didn’t bother to call me and check on his schedule first. This has been not good, he gets really upset and overwhelmed so no more just dropping in to confuse and upset him. I think Terry was better today because he was not being overstimulated with a bazillion people. He actually remembered for a few minutes that he lived in Olympia and that he crashed his back. He knows something is missing and he is in a lot of pain. Positive signs but hard for me to deal with. My humor is in short supply today.

I’d like to drink or smoke or maybe both. Running down the street screaming might be nice too, but I need to keep my act together. This poor old journal will be hearing me vent and the emails sent to update folks will have the nice parts. Split personality? Bring it on.

 

November TBI 2006: I Can’t do This Anymore

Note from six years later, September 2012. This entry is hard to read for me. The pain still feels so real. I have to remind anyone who reads this, things change, things get better, nothing is static.

Nov. 6th, 2006 | 12:04 am

I think I have reached too far into this unending nightmare. I’m at that magic point where the friends who rushed to man the gates when they heard the terrible news have now evaporated. They have given their all and now they are gone back to their tidy–tidier than mine–lives and I am left so alone and so unable to cope anymore.

Today I was cleaning the garage and rearranging stuff to make room for more 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 and 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 me. 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 which is hilarious but so sad.

He cannot comprehend wait. Today he wanted to go for a walk, I promised him as soon as I got the car unloaded I would put my clothes on and 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 was so upset and angry.

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 fucking universe who can help. I don’t like him, 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 and gets up every three minutes. Sits up, walks out of the room, you name it.

Today he went into my studio and tried to go 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 one of us to help him because he has fallen three times in two days and we want him to have his freedom but he needs to understand he has no sense of balance and no real comprehension of what he is doing. 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 have to shower with him because I can’t leave him for that long. I eat meals by wolfing down leftovers hanging over the sink and listening with one ear. I’m gaining weight because of the way I eat and I hate it..

Corey came to help, bless his heart, but he brought Alex and Terry cannot tolerate barely stimulation of one person let alone a small child. Shayne brings Heather, Penny brings Bob. I need help but I need ONE person and no one understands that and I feel so bad about trying to explain to kind people who want to help. 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 nurses 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. It’s only four years old and its cracking under the strain. I hate being responsible and not being able to lay down this burden for a single day.

I feel guilty and angry and I hate that I feel guilty about being angry.