TBI Six Years Later, Sharing the Story

On September 12th, we will mark the sixth anniversary of my husband Terry’s life changing accident and our fall down the rabbit hole that is traumatic brain injury. Somewhere in the past year, I got so busy just living life I didn’t finish transposing all of my journals about our journey through that time. Its time, I need to close that circle.

http://coreysnow.wordpress.com/2012/09/03/like-tears-in-rain/    Now my oldest son Corey is dealing with TBI, the result of his wife having had a stroke a few years back. It has finally been diagnosed after years of frustration, but it came with its own overwhelming set of problems. It reminded me  again of how hard and harrowing that journey back is for caregivers. I need to pick up my “pen” and write what I know, what I learned. If I can light a candle for one single person to see their way a little further down that dark tunnel, its worth it.

Here is the next chronological entry from my journal six years ago. The earlier posts will be found listed in the Category tab to the right under down the Rabbit Hole, or above under Living with TBI.

More Horrible life of the TBI

Oct. 22nd, 2006 | 12:09 am

This is a long, long rant. Feel free not to read it–but I have been in my house for seven days now with one short visit out to the grocery store and another one out to pay bills while someone else kept an eye on Terry and I need to talk!

I am devastated by what the future looks like for brain injured people and their families. There is no help for them in Washington to speak of. We have been home a week tomorrow and it has been a hard week–I am going to continue sending these updates out occasionally because no one on the planet–at least the part of the planet called Washington, has a clue as to how to help anyone with a brain injury and the more people know the more we can begin to demand a change to the situation.

The insurance companies don’t appear too useful once the acute care phase is over. Doctors are the same way. In no way is Terry ready to be at home except perhaps physically. If he had only had physical injuries it would have been fine but with the mental injuries he needs 24 hour care. Not necessarily an RN with pills and needles–but guess what? For the most part insurance only covers “intermittent” in home care delivered by an RN not the necessary 24/7 minding.

I am so angry I can hardly speak most of the time. The hurdles I have jumped this week and the hoops still ahead make me want to just sit down and cry. I have been unable to return to work and unable to do anything but make sure Terry doesn’t hurt himself. He has a severe disconnect between reality and Terry. Yesterday he found his earplugs and sat down to put them on–his feet. That was funny…. today he got dressed by putting his tee shirt on his legs and yesterday he decided to shave with his electric razor. We caught him just before he dipped it in the water. He almost knows what he used to know and as a consequence is seriously dangerous in his application of what he thinks he is doing to what he is really facing.

So why do I need this constant care for him which I am not getting? Terry does not respond particularly well to me, his son Shayne or Shayne’s wife, Heather. We are not peers and he sees no reason to follow our wishes, orders or demands. I can ask but he doesn’t necessarily comply–even if I’m trying to get him to see he is about to urinate all over his chair.

He has no sense of time, no sense of direction and cannot find doorways well. He doesn’t know what things are or what they are for quite often. I am sitting here on the couch and just heard the bed rustle and creak–automatic stomach ache—is he getting up? Will he be able to find the bathroom this time? What will he do? In the middle of the night more often than not he is unable to recognize the bathroom and has urinated on the toilet, under the sink, on the rug outside the closet and in the yard when he cannot be stopped from going outside in the dark and rain completely naked. Luckily our yard is fenced but Thursday he claimed he was putting his shoes on and insisted on going out the front gate barefooted and walking on sharp gravel to the neighbor’s recycle bin on the street which he proceeded to open and peer in—looking for his shoes. I finally convinced him to come back into the house and succeeded in helping him with his shoes.

In the night when he gets up he is like a man possessed and Terry is not in there, he is a sundowner. Its someone else who is sarcastic and angry, refuses to speak to me and more than once has offered to move me if I  don’t move. This happened last night when he got up and decided to go outside at 1:30 a.m. I had to follow him out of bed when he said it was time to get up. I told him it was the middle of the night but he did not believe me and said I was a trouble maker. He grabbed a blanket and succeeded in pulling it over his head–instead of wrapping it around himself. He had no shirt or shoes at this time but at least had on pajama bottoms. He headed for the door and I stood in front of it and told him he was not going out. He told me to move or he’d move me–I said no and blocked the door with my body. He told me again to move and tried to grab me and move me. I wasn’t budging and he gave up and turned around and went out the back door before I could catch him. He wandered down the sidewalk and back into the house where he sat on the couch and tried to sleep. I asked him if he knew where he was and he said it didn’t matter because I would just lie about it anyway. It was 1981 and he was at Ft Lewis according to him. It is the strangest feeling in the world, so surreal to be facing things like this in the middle of the night. I always check to make sure the knives are put away and my cell phone is in sight in case I need it. So far no real tragedy has occurred except to my nerves. These incidents shake me badly and I am losing ground with my feeling that I can control the situation.

Today he was sleepy and sweet and very nice and almost like Terry, but he still isn’t Terry and never will be the same. With luck he will become someone who can come back into the world and be a new and different version of himself, but that takes time and rehab and healing. No one knows how much time it might take, no one can even guess. It’s very odd to be talking to him and just watch the lights go out in those blue eyes. You can see him lose his focus and then he either falls asleep right there or starts talking garbled nonsense that sounds fairly normal–today he was playing baseball all day according to what he told Don Bowman. You cannot distract him or tell him what is really going on. He is unable to take it in– but then he’ll come out of nowhere with a bit of something that stuck in his synapses. We went for a slow walk today because the sun was out and it was so beautiful. I asked if he wanted to go to the garage and see his motorcycle. He said, “No, it’s just a busted up Fatboy.” This is the first time he has realized he has a Harley. He still cannot comprehend the accident and all the retellings in the world have not really sunk in at all. He literally does not understand why he hurts so much and what happened. He retains new information about 5 minutes to 1 hour depending on some set of circumstances I don’t understand.

I’m desperate to find help. I have to go to work because Terry cannot and all I can do is watch him all day long. I get nothing accomplished and my shower is still not done. I have to find ten minute increments when a friend is there to keep an eye on Terry. I have been without a shower for two weeks now and I’m getting fairly tired of cat baths in the sink. I’m on the last wall and hoping I can steal enough bits when Terry is asleep to finish it so I can grout it.

The problem with finding the help we need through Terry’s three insurance companies is the way the statute is written which is not for custodial care. I need someone to help keep Terry safe and to exercise his mind as much as possible. I can’t do it all. And I need more than just day help too. What am I supposed to do with a 14 year old who needs me too? According to the home health care nurse who irritated me beyond belief–an inept man who managed to screw up two or three veins in Terry’s arm–Terry is not allowed to leave the house and still qualify for this in home care. This in effect makes us all prisoners as I certainly cannot leave him home alone–even if it were allowed. I have been out of my house one time this week when a friend came over long enough for me to go get groceries and another time to pay bills. Torin was stuck and needed a ride and I couldn’t even get him because Terry cannot be trusted to ride in a car yet. (As in tired of the ride and jumping out). I had to ask a friend to rescue Torin for me. This is what insurance companies and the medical community don’t get. They are destroying a family. If I cannot work we lose everything we have and with Terry not able to work I have no choice as I have to make up our losses by myself–I don’t think I can make two peoples’ salaries all day and watch an unpredictable brain damaged wanderer all night.

He has a cast on his right hand which he constantly tries to pick and peel off. He claims hourly he doesn’t understand why he has a cast. This afternoon it was because the dog bit him, an hour before that he said he hurt it falling off his bicycle. He doesn’t connect with reality very well. He just came out of the bedroom in his underwear, he has had his medications and should be asleep–instead he is demanding the radio be turned off–nothing is on but the dryer. He is trying to turn lights out although I tell him I am still awake working. He finally gives up on the light when he burns his fingers on the bulb. Then he goes outside and down the steps–I run after him and stop him from going through the gate. He tells me he has to get the garbage out. I tell him its Saturday night and the garbage is out back. He pulls on the gate and leans into my face and says let go. I wonder if this is the time he is going to hit me? I refuse to let go of the gate and look at his eyes, half opened and completely unfocused. I tell him again to look where he is and suddenly he gives up goes back into the house and climbs into bed shivering. I follow to tuck him in and say I love you, but I wonder as I leave the room how long can this go on?

I am hoping we can find an adult home for him for a few months where the rehab staff can go to work with him and Torin and I can go see him too. The hope is as his brain heals he will be more able to understand what is going on, but for now the system has let us all down and I feel like I’m stuck in quicksand up to my eyes. I have made calls, and calls and calls and tried to figure out this labyrinth. Friday, I think I may have made some headway but that’s what I thought Wednesday and Thursday too. The LEOFF1 Disability board has to be supplied with letters from the doctor, treatment plans and costs so they can decide if saving our lives is feasible. They say they are very concerned about us but I am feeling they are far more concerned about saving their money.
Please understand I love him very much, but I want to help him get better. I want Terry back and my watching him decay is not getting it done. The therapists all finally showed up Friday and perhaps they can help. One in particular seems to grasp what is happening and I am hoping on Monday she can furnish more information so I can get it to the disability and then pray more, again, still….

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