|No, not the actual doctor but this is as close as I could envision|
So our latest escapade was getting my husband re-screened for Traumatic Brain Injury. Now I have to admit...we are "one of those" cases where no one really seems to know what to do with us. However, like a bad penny...I just keep showing up at the VA and pushing. If I can't get it done there, I will keep going elsewhere. After several years of "chronic weirdness" as I call it, and symptoms really not belonging with the term "post traumatic stress disorder" given by the VA; we had him screened for TBI finally in 2010 which was three years after he came home. Being that my husband was the combat medic for not only three platoons of his engineer group, but also the medic for several groups under the 1st Marine Division....much of my husband's memories are a bit muddled. As you may recall, my husband was involved in several incidents such as mortar attacks, small arms fire, exploding chlorine gas bomb in a tractor trailer rig, many many concussive blast exposures, a fall to the back of the head and an accident in a humvee when a sandstorm suddenly hit them outside the wire. This all are among many others that I can NOT talk about. On some days, my husband was dealing with casualties, and many wounded...so any injuries sustained himself were self-diagnosed and treated without a single thought. He was their only medic so what happens when that medic is down? Means the others don't get treated. Among medics, self diagnosis is common and treatment disregarded because their job is to maintain the others. "It's a badge of honor" one medic explained to me. "You don't stop. You get up, you shake it off and you keep right on trucking because you aren't important, the other soldiers are."
It's hard to pinpoint which event among those 17 caused the Traumatic Brain Injury although we have a pretty good idea which one it was. Although he wasn't medi-vac'd out of Iraq, he was bleeding from the ears, nose and knocked unconscious. He doesn't remember how long, or exactly what happened...but remembered someone yelling "Medic! Medic!" and waking and helping him up. Other than a severe headache, nausea and dizziness....he still doesn't remember anything prior to that or much after that. Something about that day haunts him constantly as I still to this day, get to relive those moments in his nightmares and sleep talking. He told me a few days later after this particular incident when he called home, that he had finally broken down and gone to Medical on post because he just wasn't feeling all there. He felt rattled he said, but they gave him some Tylenol and allowed him some short down time before his next security and medical mission. Some missions he worked dual positions and on 24 hours shifts, there was no time for "down time".
When we finally heard the term "TBI" and discovered that the Army and the VA did NOT screen him for it...we had him screened in which he showed positive for it. The testing for this is long and supposedly, they are supposed to break it down at the VA over a period of several days because it can take its toll on you. Of course, in the real world...that's not how they do it. It took my husband eight hours to complete the test.The first test we got a "Dr. S" who explained that he couldn't grade my husband's TBI test because "his exam is so poor and his test results are not in my psychiatric DMV book so I can't grade it". I was somewhat concerned but "Dr. S" said all he can do is give him a mild diagnosis. Now at the time, I didn't fully understand how one does the scales for TBI in regards to grading it mild, moderate and severe, and all I knew was this doctor really didn't know what to tell us. It has weighed on my mind about my husband's test being so bad that they couldn't grade it, and how we were pushed right back out the door with nothing more than "yeah, he definitely has TBI".
We were given a caseworker which we didn't meet until recently and who really doesn't seem to be able to help much or even called to check on us. My husband was sent to speech therapy who gave him a PDA to keep track of his appointments and who told him to write things down. While those ideas are helpful, it still didn't explain the "chronic weirdness" that he was experiencing like the sudden loss for words, the extreme forgetfulness, doing things he never did before like forgetting to lock the doors, forgetting to turn the stove off, and the list goes on. The other concern I had was he is having issues finding the correct words he needs when he is trying to say something. The headaches come and go, but the black floaters as my husband calls them and sensitivity to light was bothering him, which are all common. However, I started noticing the stuttering, sometimes shuffling of the feet, the fact he could not react to quick things, blackouts and other problems that just didn't seem right and no one would explain them or address these issues.
Being me, I pushed harder for him to be re-screened and we finally got it last week on May 12th. My thought process on this was maybe they will see something the other guy missed. Maybe there is the key somewhere in all these questions. We know has TBI but what can we do to start helping him? My husband was agitated and extremely anxious because the day had been long, tiresome and exhausting. We had hopes that someone could explain what was going on with these issues and so we come to meet "Dr. A" as I call him. After a long, hot day and my husband already pissed off because of other issues dealing with PTSD....we awaited somewhat on the edge of our seats to meet with this neuro-psychologist who we had hoped, held the key to what was going on with my husband. As soon as he walked in, it wasn't five minutes of the conversation he mentions to us that he was diagnosed with Alzheimer's. I have to tell you dear Readers, this concerned me greatly and my immediate reaction was "You have got to be f*****g kidding me" along with the usual alarms going off in my head that this meeting was not going to produce any answers. Hey, I am usually a positive person but the VA has turned me into Miss Debbie Downer along with having the "it can get worse" attitude ruining my normal outlook.
"Dr. A" begins the discussion of how there are so many fakers in the VA system and how that irritates him. "Disability seekers" just rub him the wrong way. "Of course" he said, "nothing like that has to do with you but people try to fake these tests and it just doesn't happen that way". Hey man, I get you. I really do. It pisses us off that we KNOW some who are simply that: disability seekers. Try being in the shoes of those that are desperately seeking help and can't get it while watching the seekers get all the benefits they want. However, I wouldn't be pushing so hard on answers for a diagnosis we aren't even getting disability for to begin with! I gather he was just venting in general but it sincerely rubbed me the wrong way right out the gate. I was somewhat confused because although he is telling us all this, I couldn't quite grasp why he was telling us this.
He goes over the test results and proceeds to tell us that my husband scored very high in some areas, but very poor in others like the language and memory. However, his problem solving skills were above normal but other portions were below normal. He then tells us how he really doesn't believe in the diagnosis of PTSD or TBI which are just "nice" ways of saying "depression and a bump on the head". The entire time we spent with "Dr. A" produced quite a bit that revolved around him having Alzheimer's, his electrical problems at his house (oh yeah I know...head banging against desk time) and while I feel sorry and horrible for him, I couldn't help but wonder....was he being completely fair to my husband and his issues?
Back to the tests, "Dr. A" reported that my husband's poor areas were showing he must have been a severely poor person in school and probably a bad student. I immediately responded back that "no, my husband went to a small school but was one of their best students in grades, attendance and in behavior" in which that was completely ignored. Spelling he did poorly on which was one of my first alerts because hell, I used to ask him how to spell stuff. Now that he is showing signs of simple things like the word control, and spelling I have to worry. He then tells us that my husband's problem solving skills were above normal which means that part of the brain is working, but other areas he scored low in. He then goes on this tirade of how my husband needs to "get over it", "get back on the horse and go get a job", "you are too emotional and depressed" and "you had TBI but its cured now. You don't want to live your life this way do you? I have Alzheimer's, live life to it's fullest. Just get out there, drop the emotional baggage and get back to it". So we sat there, and my heart was racing. I couldn't argue with him, wasn't going to waste my time even trying...but really? If it was that easy, trust me...we would have been there a looooong time ago. I kept waiting for my husband to go off and bless his heart, he just sat there with this totally defeated look on his face. So I asked intelligent, educational and rational questions for him to answer hoping for some answers and all I did was get reamed over the fact my care giving is "impending" my husband's health. I was shocked!
Now while my husband was taking his test, I was given a "what's going on in the home" test in which asked for you to check as the family member, how often, most frequently, always, sometimes, less than always answers for some pretty hard and some easy questions. It also asked for examples to be given in which I had plenty of time, so I gave this doctor PLENTY of examples...as many as I could fit on the page with the corresponding questions. I did report the blackouts, the headaches, the extreme forgetfulness, the stuttering, and everything in between and examples of how I helped my husband during the day with daily life. I reported things that are going on with him and just like it asks me...things I am noticing. I don't wait on my husband hand and foot....I don't bow down to his every whine, need or whimper and do believe that as a "caregiver" you can be detrimental to one's recovery if you are taking away much of his independence and not allowing them to do things for themselves. Motto in my home is "Try Try and Keep trying till you kick its ass!". My husband may have issues, but he isn't completely immobile, unable and is capable of doing much of these things on his own. However, the repercussions of some things like cooking can result in small fires. Not reminding him to shower or shave, or take his medications because he forgets...results in a very smelly and very very irrational and grumpy man. Driving due to blackouts or forgetfulness on time, can result in him possibly harming someone on the road or end up in inappropriate behaviors/places and not know how he got there. Because I go to his appointments with him, it makes sense that I drive.
I try to help him by giving him daily things to do. I work with my husband on memory skills, keeping him busy and small things to focus on as well as "prompting" him when its needed. We work on putting puzzles together because the biggest complaint my husband has and myself too, is that his hands aren't working with his brain at times. So I thought that puzzles or cards, might help improve those abilities. I provide routine and structure in which was recommended and approved by his psych doctor because he functions better in those types of environment. He works in the garden and we are looking into different programs for not only PTSD but TBI as well outside the VA. I have a calendar to keep his appointments on, he has a chore list and a daily task list. He writes notes to himself in his notebook he carries all the time. His medication is put out for him in a special cabinet solely for that purpose and a reminder/prompt is needed or he will forget or even better...take it twice.
So we aren't just sitting here, looking at one another while I am doing every little thing for him down to wiping his bum or breathing for him! "Dr. A" gave me an earful without asking all that I do, about how I was doing everything for him which is producing more harm than good AND a lazy husband to boot! Some of the things he mentioned must have come from someone else because it had absolutely nothing to do with us at all. Not on the tests, not in my answers, hell...not even in my husband's responses. I have to admit dear readers, I was hurt. "Dr. A's" suggestions were to let him go and make mistakes, deal with the consequences later and stop with the puzzles but pay 300.00 on college advanced courses like calculus that he can watch on a dvd on a daily basis to make him think harder. I told him nicely, that "you aren't living with him. You don't see what its like. How can you say this when you don't know the whole story? If it was this easy as walking away and leaving him be...buddy all you would see is asshole and elbows belonging to me running out the door to go back to work. I have an education that is collecting dust, and we don't like living in poverty level. Why would I waste my time helping my husband if he didn't sincerely need it?" He said "well its just lack of drive because of his emotions". Say whaaaat Doc? What the hell is he talking about?
My husband's TBI is cured/healed he stated. He had it but it has completely healed with no problems afterward. He did state that my husband's tests produced the same results as last year's so it wasn't any different which is rather interesting because last year the same results ended with a TBI diagnosis. Now that "Dr. S" gave him a diagnosis of TBI, this doctor wanted to pull that and state my husband is simply "emotional". Now here is where we are getting crossed wires and I wasn't exactly sure if "Dr. A" was understanding how he was coming across. Now I like to think that I am a pretty smart cookie. When and if I don't understand something, I research. I look at all sides and possibilities, so I wondered if my husband's PTSD was so severe that it was causing all these problems. Depression can impact a person's motivation, hell we as caregivers can testify to that right? So I asked. "Dr. A" but he really couldn't answer me but said that emotions can cause the brain just to stop". Well, ok...so here I am looking at my husband thinking to myself, "he is so far gone that his emotions are causing issues with the brain". In this same conversation, "Dr. A" reported that my husband's left side/hand was weaker than his right which was very unusual in his opinion because my husband is left handed. My husband has no feelings in his hands so this "new weakness" really didn't surprise me any.I also noticed and reported the left side being weaker in my test as well as the noticing of him dropping things or the inability to work with his left hand.
Now while he is talking about his, he suddenly starts talking about my husband's psycho-motor skills which have "declined severely since the last test" and now they are so "severely impaired" he is concerned enough to warrant a seizure of my husband's drivers license. I sat there and my heart just dropped. Although my husband doesn't drive much, he does go up the road to a farmer's home and hangs out there with the horses etc. He doesn't drive much, because he doesn't leave much due to his PTSD. If we go out, I am usually with him and drive. The only thought I could think of was "If this man takes away this one precious little thing, my husband will kill himself". I could see it on my husband's face, the look of defeat, the look of total loss. My husband teared up and said "Sir, I have had everything taken from me. My jobs. My mind. My life, my family..and now you want to take this too? It's the only independence I have!".
I argued with "Dr. A" mostly because I was so scared that this would be the straw that broke the camel's back so to speak. I explained that my husband recently attempted to commit suicide and I felt that this would be the WRONG time to slap something so detrimental on him...I guess I hoped that he would understand the underlying plea of "please do not send him back home with me and let this be my fault and have to deal with the consequences". I argued that I drive so why not let him have this one thing to himself with the promise I would drive him where he needed to go? I also argued that I didn't understand how "emotions" impair someone so severely, that it warrants such a drastic measure? He didn't answer nor did he care too. His last advice was "I will think about my report but am putting in that he needs cognitive and physical rehabilitation.I don't know what to tell you". I kept asking to myself "Why does he need such therapy? Is that for too emotional of people?"I would have asked him but he was too busy looking at the clock and rushing us out the door.
I have to say Readers, we both left with our tails tucked underneath us. I left confused, second guessing myself , second guessing my care giving of my husband and second guessing my husband. I left feeling horrible that I just put my husband through all of is. No one is more to blame than myself. We just wanted answers to what was going on. We know it and see it...but a doctor who doesn't know much or want to know about TBI is the one we need the answers from and he wanted to tell me how I am failing my husband? More importantly, my husband left feeling like yet another person in the VA system didn't care what happened to him or what was going on. He left in a tirade and took me quite a while to get him calmed down enough to drive him home. He now feels he is just crazy and really doesn't have anything wrong with him. He feels defeated and so do I to be honest with you.
I felt that way for 24 hours or less and did what I do best...got back up on that damn horse and dug my heels in deeper. I first contacted our Federal Recovery Coordinators, (yes we have two now-more later on that), in which both agreed that it sounded like we were coming under fire because of this Dr's problems and I agreed. It was also noted that no one provided a TBI doctor to read the results. It felt like we were being on trial and having to justify my husband's problems that are not as severe as Alzheimer's. I talked to our Caseworker who "couldn't advise me" THEN I called a researcher at the Memphis VA whom I dearly adore and knew she would give it to me straight. Which she did. She explained to me that emotions do not cause these types of issues and when the doctor said he was healed, did I witness the parting of the waters as well? I had to laugh but she reminded me how well of a job I was doing and don't give up. That the problems he is facing is indicative of TBI and the damage is in the parietal lobe. She told me she would love to see a SPECT scan because she would bet that portion of the brain in swiss cheese holed which is sad. Surprising enough, I learned where the parietal lobe is located which is the area he hurt himself over and over again. She encouraged me and explained how a doctor gives the diagnosis of mild, moderate and severe and how even though I was misunderstanding...mild TBI didn't mean there wasn't serious issues involved. Untreated she explained, can cause more deterioration the longer it goes on. She also told me that such tests are given but it takes a doctor who KNOWS how to take the PTSD from the TBI and separate those from the answers. With a guy maintaining that ALL TBIs are just bumps, and not knowing the answers..makes me wonder if he knows anything at all in regards to TBI. She made me feel better and I thank her for that.
We met with my husband's psychiatrist on Friday who looked at me deadpan and said "Ummm PTSD doesn't cause psycho-motor skills and that is all crap". I guess I needed my husband to hear that validation he was not indeed crazy or that emotional. Maybe I needed it for myself. I did tell the psychiatrist that I felt we were under fire for my care giving and being lumped into the disability seekers that doctors want to place you in. She thought on this a moment and being the serious person she is, told me the difference between disability seekers and those that have serious issues is caring. "You care and you fight. Your husband cares because he keeps trying anything and everything...together you are fighting back..that is the difference. You aren't disability seekers, and it isn't emotional that is happening to you." as she looked at my husband. Out of all of them, they made me realize my husband just wasn't simply crazy or just too damn emotional, but it was like ok...so how do we combat "Dr. A"? I just know now that my husband is steadily declining and I am concerned. I have a clearer understanding of TBI and all that it can affect and I feel somewhat better although I am to the point now of "where to go next?"
I guess we will just keep going up because that's all you can ever do with these problems. I just wish sometimes I had the help pushing me from below upward, because sometimes I feel like the weight of the world is on my shoulders...and no one really cares about us as far as the military and VA is concerned. I noticed here recently I don't really fit in with other TBI spouses because they aren't facing the issues of the army losing military and medical records, or not receiving awards that were put in for, and even what I am dealing with on the TBI. You hate to say "Ok those with a mild diagnosis raise your hand". The ones I do know are/have been in worse shape and some I am too ashamed to ask because their husbands are worse than mine and it makes me feel weird/awkward. Who am I to complain and bitch when they are facing so much worse? My husband may not have been shot in the head or had shrapnel embedded but I understand the spouse...I get it. So why feel the need to put someone down or make sure their husbands injuries gets beaten into me every single time I or someone else mentions it to some and so nastily reminded to boot?
Was my husband hurt though in the line of duty? Yes and several times over. He still hurts just like some others. Did we both lose out as the spouses? Yes. Am I hurting like you are? Hell yes. I guess I no longer fit in because I have compassion enough to say I understand and I know you are hurting no matter who they are. There are many though who have no idea what you are going through and they simply just don't give a shit how they treat people. All the while, I keep thinking "do some of these spouses NOT remember what this feeling is like to be so alone and not know what's going on or what to do? Were they mistreated so badly by prior spouses to make them so hateful to newer spouses who have questions?" I also wonder, "how many of those did my husband save during combat, getting them out of harms way...only to have their spouse treat another fellow spouse like dirt?" I think more of the ones my husband was not able to save, and suddenly, I just have no patience for those who feel the need to grind their heels into your face and spit on you. I feel out of place because of those people and don't fit in with much of anyone anymore. It was nice to have some though that did help answer questions I have had but some of the nasty ones? Just made me feel like I had no where to go anymore. I haven't walked in their shoes so they remind me, but you know what? You haven't been walking in mine either. I didn't realize it was such a competition to play the wounded soldier's injuries as it is to some women. I have no time for that. So I figure I will keep going at it by myself and fight....fight til I got nothing left to fight for all while holding up my husband while I am doing it. I will write more later on the newest developments in our crazy upside down life but right now? I am going to walk away from the PTSD and TBI and take my children outside to play for a while and think about my next move......
Anywhere But Down,