Picking up from my previous blog, I will now begin my tale of these past few days with not so much sadness but most definitely with fierceness. As mentioned before, they took my husband to be "voluntarily committed for pyschiatric consult" and shipped him off to Nashville. I couldn't understand why they wouldn't keep him here as we have the same type of lockdown facilities as Nashville does. Woodridge, a non-VA mental health hospital is in the same city as the VA so there was that option. With two of my three children, it was almost impossible to find care and keep them in school. Around here, school children only have so many sick days that a parent can write a note for. After that, it must be by doctor's excuse. Didn't think that a note from their mother saying "please excuse so and so from school, his father had a long term severe flashback and had to be committed" would go over very well with their schools without trying to get some type of doctor to write them a note.
After they transported my husband to Murphreesboro....I never got one phone call from anyone. They left me no numbers to call, no way to find out how my husband was...nothing. He was able to use the phone the next day as they gave him a phone card for long distance. He was to say the least, not very happy with me. I asked how he was doing, and he was a piss pot about everything. "They took my clothes, my shoes, won't even let me have my medications except my stomach pill for acid reflux". I was surprised, so I explained there must be a reason for all that. I then asked if he saw anyone, he said no. I have been sitting here since 6:30 this morning with all these people who are alcoholics detoxing or severe drug addicts and working on a jig saw puzzle. Because there is only one phone in the commons area as they called it, he had to keep it limited to ten minutes. I know he told me he wanted to come home, was kind of pissy about it with that whole undertone of "I can't believe you did this to me" interlaced with his sarcasm.
On Monday, I called around and finally found which floor my husband was on. The nurse on duty could only tell me that he was stable and that was it. She did give me the number I could call him between 10-6 as long as no one was on the phone. I called him Monday and wow...what a HUGE difference in him. He sounded clear, focused on the conversation, and more alert than he has been in the past four years. Because it was a holiday, they would not have a pysch eval until Tuesday for him. He did tell me on the phone that I saved his life....and he wasn't angry with me as that was the best thing I could have done for him. He said that he felt so much better because he wasn't on all those meds, and for the first time....his stomach wasn't acting up like it normally has been for the past two years.
So while my husband is sitting in lock down awaiting the review, I am calling around our VA. The first thing I did was call his caseworker for TBI which was just recently assigned to us. What a joke. She passed on our information to someone else named *&^&^%%%$$ and this caseworker gave me a call. She was very nice, very sweet, very understanding and lived in my area. She started asking me about my husband's job which I told her that he has now lost and will not be allowed to return to work. I explained that his job will require a full 100% mental health evaluation, and between you and I....he ain't gonna get it. She then said "Oh I see he is drawing 50%, but he should be drawing 100". Yeah...ya think? So I tell her we have all this on appeal, haven't heard anything in seven months and that they have already stopped payment on portions of his check. So currently, my income for a family of five is sitting at 978.00 a month. My mortgage on my home is just about that.
She tells me not to worry...the VA is going to help my family. She then says she has ALLLLL these contacts that she can tap in to around my area to place me in a job to help support my family. I sat there and listened and said ok....now you have to remember I have a special needs child that can't go to a regular day care. He is a severe asthmatic which requires daily albuteral treatments three times a day, he has a special diet as he is deadly allergic to peanuts or anything that is processed in a plant that has peanuts. He is also allergic to wheat, milk and eggs. Our state requires such children to have a liability form signed by parents stating that they won't hold such daycares responsible if they do not provide treatment fast enough and he dies. I have worked in such daycares for hours earned towards my school. There is no way in hell I am allowing my son to go to some program where he may not get emergency treatment if they don't spot the signs off the bat. His epi pen will only give us 10 minutes sustainment until we can get him to the hospital or emergency help arrives on scene. He has been this way since birth.
Her answer to that was "well there are plenty of babysitters who are registered nurses that only charge 15-27 dollars an hour". Now, I also have another child in school who gets out at 1:45 p.m. each day. So I would have to work between 9 after I drop them off and leave at 1:00 p.m. So her solution to that was "well why can't your husband take care of them and you work full-time?" Ummmmmmmm.....whose file was she reading? She asked me if I had filed for his increase on his PTSD. I said no, because I wasn't sure how to go about doing that. She then explained the process of going about submitting new evidence. She told me I needed to get that in ASAP because they might be able to expedite while he is still in the psych ward. She then gives me resources through different organizations, all of whom I have worked closely with in the last seven years....none of which will help Reservists or National Guard unless they are on active orders. . THAT was what the VA had to offer me. That women never called me back again although she swore up and down she would be in "constant contact".
Our current TBI caseworker also suggested that I apply for an increase while he was hospitalized. The ER nurses and even the doctor told me "you need to do this asap". So I think to myself, ok...this makes sense...lets do what needs to be done. I have documentation that he flipped out, documentation that he lost his job, and documentation of being hospitalized. So I call the Veterans Benefit Advisor who tells me no, he will not file an increase on my husband's 50% PTSD claim. I need to leave it alone and instead...ask for an exepedited decision to be made on his TBI. Uhhhh it wasn't his TBI that put him there, it was his PTSD. He then tells me IF I file for an increase, the VA will stop payment on any and all funds he is recieving and therefore will not get it back until a decision has been made. That could take months to years he says. I couldn't understand this.....and before you say "oh they can't do this Mistress...they can't stop payment on a disability award"....Ohhhh yes they can. We are living examples of this.
If you remember from my other posts, the US Army lost all military records for about 165 soldiers from the unit my husband was pulled with. They were never awarded their CABS due to paperwork being filled out...but never sent in. 17 incidents and not one darn award. We have a soldier currently who was shot in the face, still fighting for his disability. Now what is holding up my husband's claims for lower back injuries, bilateral knees, TBI, severe PTSD, depressive disorder, hearing loss and tinnitus....is records from basic training from 1998. Yes. I guess they want to make sure that during the basic training process, he didn't become injured. This leaves me scratching my head why his claim is being held up for three months of that year. We have provided what we had, but the military won't send the records because they don't have them.....hence the reason our case is on hold. Because we asked for an increase, they stopped payment on portions of what he was getting due to "deferment". I have been fighting for those military records for four years..the Army admits they lost them somewhere in a connex between Iraq and Ft. Benning, GA. However, they will not give me a statement saying so. Of course not! So here we are....with no help, a VBA rep who won't file our increase, and asked for an expedited review on TBI and to process the decision without the medical records.....for something that didn't cause him to lose his job, be hospitalized or what may cause our family to lose everything we own.
I spent most of my Monday and Tuesday on the phone....constant circle jerk with people passing the buck to another and no one really caring what happened to my family. That's fine. I know there are some really really good people who work at the VA and then there are some really bad ones. What hurts the good ones are the ones who are bad, and then the good ones who want to help are tied down with red tape and bureaucratic bullshit on top of gaining the crappy reputation from the bad people. I get a call on Tuesday from the VA where my husband was supposed to be kept for at least a week before moving to another facility, and find out they are releasing him that evening. After trying to pick my jaw up off the floor, I asked if he was better and it was safe for him to come home. Quite honestly, I didn't think three days was enough. The nurse told me the doctor felt he was fine to come. I wasn't so sure, so she got crappy with me and said well, you can always opt to place him at the domiciliary where the homeless veterans go. I had the most scary experience with my husband, and only asked if it was safe for him to be released...I didn't know I was going to get the "bad wife" award on top of it. I love my husband...and I know that it couldn't be helped what happened to him. I didn't want him placed in a homeless facility, but at the same time....I have to think of my children's safety and my own.
They did tell me that in all my husband's seventeen different medications to treat the symptoms of his PTSD and TBI, Ativan or Lorazepam should have never ever been given to him because of the TBI. It is a drug that it used temporarily, but my husband has been on high doses several times a day and has been on it daily since 2007. Another "ooops!". The nurse told me then, "we can't keep him because he isn't an alchoholic nor is he in need of detoxing from drugs, so we are sending him home.....Oh...and you need to come pick him up as we will not be transporting him back". Now this was at 3 in the afternoon, and that was almost a six hour drive for us. Thanks for the heads up.
So he has been knocked down to just vitamins for TBI, one anti-depressant and his stomach meds...one med to sleep and he has been more normal than ever. I still feel the need to be jumpy, watchful, and somewhat leery of him and I hate that. However, he seems happy. He speaks clearer, he is sleeping well and waking up without all that grogginess and grumpiness. He has been doing projects that he has been putting off, playing with the kids and helping me around the house. He seems like my old husband again. So why do I feel the need to be leery of him?
Now we had an appointment with his psychiatrist the same week. She talked with me a long time, I think probably two and a half hours with the both of us. My husband really wanted me to stay in the room and let me listen in. For the first time, she really listened to me and my concerns. After looking up his records, and reading through...she then cautioned me about asking about his disability benefits. I didn't understand what she was talking about. So in my husband's case file...she reads me portions from low and behold...the lady who "has the job and ALLL the contacts she needs to help my family" and leaves out everything that was said on her part. Pretty much in a nutshell....she stated in his file that my only concern is how much disability he can get and how fast. WHAT! I explained to the Dr that wasn't true at all and these people called ME...not the other way around. She said spouses have to be careful and make sure that they aren't being put down as "benefit seekers" because caseworkers have the tendency to only write the spouse side of it and not list the questions or what they asked or told the spouses. WHAT A CROCK OF CRAP!
So here I am trying to defend my actions of only trying to figure out how to do what everyone kept pushing me to do! My concerns were not just the benefits, but what happens next? Is that all there is? Is there PTSD programs we can put him in? He has such a bad break and they just cut his meds, send him packing and leave me to figure it all out by myself?
I am going to try and file SSI or SSDI whichever one that is. The paperwork reads like stereo instructions to be honest with you. Our Congressman has accepted our case for disability and his lost records, but I am not sure if I am completely trusting in that. I guess we have heard from so many "Big Named" people and people who hold a ton of power...only to never hear from them again. They agree, they tell me they will help and blow all this smoke up our asses...and nothing. Won't even return a phone call. I will be forced for the first time in our lives, to have to turn to the state for food stamps. How embarrassing that is as we have always been able to hold our own. I know that's what its there for....I know we have paid into the system. It's just such a long process and God, what if they are rude to us? I don't think I can take much more. I am hanging by a small thread of sanity as it is....and my husband, bless his heart....feels he needs to apologize for everything now. I know that he can't help it....God only knows how much he has suffered already in his head, he owes me no apologies.....we just can't get a break and I need help. I have never asked for much in 35 years and given everything to everyone...but this time, I need the help in return. Something has got to turn for the better...just once in our lives.
Another word of caution spoken to me for spouses of PTSD and TBI is strip searching the house. I thought this was important enough to share because I never really thought about it in the way that it was shown to me. Often times, the Veterans will momentarily black out or have small flashbacks. In this time, they can hide things. Anywhere, everywhere, and anything that they can use to protect themselves such as steak knives....silverwear, pocket knives....I was told to check under drawers, beds, cabinets, inside shoes in the closet...rip the house apart. It's not that they do it on purpose, it's just a natural reaction to the flashbacks that occur. You know, I have to admit....I would have never thought of any of those things. I was told to pull out drawers and check for taped items inside, any and all crevices....vehicles etc. Thought I would pass that information on.
I wanted to say thanks for all the emails of support, phone numbers, and encouragement. My email got bombarded yesterday with tons of support and thanks for writing my story. It's not my story....it's OUR story. So many of you told me that you had been through the same thing or going through it now...some fear that this will happen in the future because you are seeing symptoms escalate. For those that are seeing signs and symptoms, be prepared....be ready to fight, and don't be alone. Hopefully, my blog will help you somehow in my stories and what I have been through....sometimes it helps to know you aren't alone. I don't have all the answers...I may not have a clue....but I can say that I am here....this is real....and its the truth.
Still Hanging on By A Thread,