I Have No Good Excuses But He Has Plenty

You probably thought I disappeared, huh? It's been quite some time since my last blog. I won't waste your time reading up on my lame attempt to make some excuses for my hiatus, but will say that it's been more than hectic here. There just doesn't seem to be a whole lot of time for anything anymore. My mind is foggy, my body over extended and my sanity? Well, let's just say it's on the verge of giving me a permanent eye twitch!

I fell outside and encountered my first broken bones a couple of days after my last blog posted. It was a doozy of a fall and well, I figured that was a sign from the big man upstairs that I am just doing too much. I had no choice then but to walk away from many things and try to heal. All healed up pretty decently since surgery but two fingers which are sort of frozen and unable to move. My sanity and stress level improved but while I had that much down time, I did the most dangerous thing a Caregiver could do....THINK. 2012 wasn't very kind to me and if I had endured any more surgeries that year, well I could literally be my own sprinkler system with as many holes as this body has had! 

We managed to make it through the the month of October with the help of my mother in law and my oldest son and husband. The lack of sympathy or any remote interest from my husband was disheartening but I don't know why I expected anything more from him. I find by lifting any expectations, I always fall flat on my face and end up with skinned knees from disappointment. I always wondered what happens to Caregivers who need care giving too? That is probably one of those questions that stumps irony.  Kind of like "where do doctors go when they are sick?"

It's been quite a road since Thanksgiving with the Army, husband and school for two of the three children I have. Thanksgiving I couldn't cook with one arm so we ended up grilling out hot dogs and all the fixings. Turned out to be one of the lesser stressed holidays we have ever had. My husband tried so hard and offered to take us out to dinner but in our rural area, it seems that was everyone's idea as well. Just the thought of the crowds, his reactions and all that comes with it? Yeah, the hot dog were damn good! Four days before Christmas our PEBLO decides to finally contact us and wanted everything done right then, right now which was literally impossible. He moved on to another station and I can't say I will miss him at all. Right now, we are appealing much of the MEB reports because he failed to do his part of his job, failed to add in a few important details and for some reason; proof reading and correcting things that are important went by the wayside. We haven't even heard from our new PEBLO yet and of course, she is new so it should be interesting. New people seem to always be a challenge to break in, kind of like a wild horse. It's amazing we haven't scared off our Federal Recovery Coordinator or our Army Recovery Coordinator. They must be gluttons for punishment but I am so glad they have stuck around to see us through. That, and we are probably good dinner table talk and worth a few laughs here and there! I love that I can call one and she has a great sense of humor. She must wonder if I am on the thresh hold of running a circus here.

Christmas went well with few minor hiccups along the way. My husband had some bad days but at least we didn't have to deal with suicide attempts, drinking binges or anything serious. However, New Year's came and he went to see a friend up the road and never came back. I don't know why it bothered me so badly that he just ran and disappeared, but I feel not only a responsibility for him but it was New Year's Eve too. I wanted to bring it in right and I am hoping like hell that the whole old wives tale of "what you will be doing on New Year's Eve will be what you will be doing the whole year long" is just a crock. If it turns out true, I am not going to have a good year as I spent my New Year's up all night, crying. I was hoping we would be having sex or maybe share some laughs while we watched the ball drop in New York City. At this point, I would have been happy just going to bed together early and not doing anything; not crying though because my husband stood me up for a friend that he couldn't care less for. I think I was more hurt than anything. 

Excuses and Lies

My husband has a ton of them and lying has become a serious issue now. Excuses for his behavior, excuses for where he is, excuses for getting angry, excuses to the kids, excuses for everything. I am so sick of hearing them and they are constant with no rest. If it's not a long drawn out excuse, it's a lie. He is a horrible liar and most of the time, he won't even look me in the face. I especially hate when I ask him something because I know he is lying, he looks away and says "huh? what? huh? I didn't hear you?". Seriously? It's like watching a child make up an excuse to not listen to your question and then try to back peddle into a good lie to cover the real reason why he spit on his brother or why he lost his report card which had an F on it. I am not sure why this started all of a sudden but all I can think of is dammit, haven't we already been through this in the past? I used to think that PTSD/TBI had a pattern during certain periods of the year. Holidays, major event "memory day" and the rest just falls in the "other" category. Over the past five years of living with all this, it has bettered in some areas like the abuse of alcohol and suicidal tendencies but worsened in other areas. Major events I thought we were done with but after thinking about it....it just repeats itself. Every. Single. Year. There is no break from that and I realized it's just a vicious cycle that we will repeat over and over again just a little different each time. 

I just can not tolerate lying. I try to teach my children they can tell me everything, even if it's the worst. My husband and I built our relationship on that foundation of trust, honesty and friendship. I never have had that tolerance and the worse part is? I don't lie to him and he would always tell me everything. I feel guilty NOT telling him something even now. I think the part that has the highest "suck" factor is that the lying is nothing really that important to even lie over. I mean, if you are going to lie? Lie big or go home right? Don't lie over silly small things. Now, its not the "I just forgot and I need to lie to make up for the fact I don't want to admit it" just for clarification. It's just lying to be lying. I am at a complete lost at this point and I found dealing with him this latter part of the months I have been gone, has really reduced my toleration for a lot of things.I am pulling myself further away from him to protect myself. I am starting to look away at certain behaviors because it just isn't worth the damn fight or listening to the lies. I don't know if it's him or if it's me slipping further away.

Funny isn't it, how you fall in love and when you look at this person who has swept your heart away, you don't think of what you will deal with in the future. You never really stop to analyze at that point, of what would be the whole picture because one really doesn't know right? You just know you are supposed to be a part of that person and that's all that matters. Any obstacles you can overcome you think, any burdens you will carry together and all you really focus on is happiness with that person. You just know your life is never going to be the same. Boy, wasn't that the truth! Here lately though, I feel like it's more of a "phantom limb" situation. It feels like he is still there, still a part of me but you can see it's not there. The worst part is, my trust had been broken so many times that it took a lot for me to open back up and trust him once more. One year of therapy, lots of break downs and chastising myself for not forgiving and it led me here. I don't know if he even remembers the past of the wrong doings, or even acknowledges that broken trust is truly hard to gain back. I wonder if he knows how truly hurt and disappointed I am in him right now? Does he even really care anymore about anything? Now I feel like he has broken it again and again with just stupid and tiny lies, so how does one trust again? Sometimes I wonder if he knows that I still think he hung the moon just as I did the night I met him? Regardless of the bad times, I never once faltered on that thought.......

Sometimes I question the whole "is this it for the rest of my life?" probably just like my husband does. I am sure everyone does, I don't care who you are. I mean you fall in love, you get this person in your life that you love and learn to lean on. Then all of a sudden your on your own. Seems somewhat unfair and I have to question the whole "plan" for me because I just don't get it. So far God has given me the strength to carry my family and myself through, the courage to take on more but what are we really gaining? That part bothers me the most and heaven help me, I just want a small hint. Anything that says "this is where you are heading" because right now? The directions I am seeing are more like my stupid GPS with the lady and her perfect voice stating "recalculating" over and over again. Yeah...ain't that the truth!

There are days where he is truly appreciative of things I do for him or how much time I put into advocating or representing him. I do not hear "I love you" which to me I long for more than anything else. I wonder why three words are so hard? Often I wonder if that means he doesn't anymore? There are other days though, he could care less and I don't think he "sees" me anymore. As long as things go the way he wants them to, as long as it benefits him....it's all great. Of course it is, it's great for him. Anyone else though be damned. I hate thinking this way, and like I said before...thinking is dangerous for us caregivers and spouses. Thinking to me is like mopping. You start mopping but sometimes we don't always pull out the fridge or the oven right? (if you do every time you mop, that's just weird) All that stuff gets built up under there but eventually sometime, you clean under there. When you pull it ALL out, you are horrified at how much shit comes out. Yeah....that's what thinking is to me. Strange way of describing it but then who said I was normal right?

I wanted so badly this year to be a better year, but so far it really hasn't impressed me much. I will say I am trying to focus more on me. Maybe that's where we are all going wrong. Perhaps we should just think of ourselves and "put on our safety O2 mask before others". I think many of us caregivers focus on everyone else but themselves and I know how hard that is to change. I am the worst to take on everything for everyone at any time and its exhausting. So I am trying to get caught up, better organized, finally catching up to some movies I want to watch, and even bought myself an Xbox game. Now for many of you who don't know me, I haven't played a game system since Nintendo and Sega came out although I was the queen of Pacman and Donkey Kong once upon a time. I was pretty good at Super Mario Brothers too. Haha! I made myself a promise I would keep blogging and just putting it on my weekly "list of things to do". I am trying to keep up more on my facebook page, I taught myself to "tweet" (@Unclesamsmiss) in which I am quite proud of (yes, USM is not technically savvy; see above mentioned GPS comment) and planning on skipping town to see my sister who lives in AZ in which I haven't seen in years.

I am trying to do more things with  my sons albeit hard because I feel some of it should be done by/with daddy and he just can't do it. I realized my two younger sons, due to living in a rural area, have never ridden a bicycle which I hope to remedy soon (somehow). Leaves me wondering how the hell I will find the strength or the courage to teach my oldest son to drive who started Driver's Ed this semester. I honestly did try the whole "list positive things" on a piece of paper or journal bit that's been going around as a bit of therapy for Caregivers. I so far had a few positives like "we are all here", "we are all healthy somewhat", and the rest? Well, I had "I positively suck at the MEB stuff", "this list positively sucks", "I completely suck at Walking Dead on Xbox because I can't figure out the damn controller", "This list sucks" and "this list positively sucks ass". Perhaps that's why so many major organizations don't want to accept me as a writer....it's my award winning positive thinking isn't it? **cheesy grin**.  Hey, at least no one can accuse me of not being honest.

So here I am. 

Still alive.

Still trying to figure everything out and crossing off the things I don't understand.

Come On, 2013...

Mama needs a new lease on life. 

Recalculating, Recalculating, Recalculating,

  

VA Caregiver Program

Many of you have written in to ask about the New Caregiver Program for post 9-11 disabled veterans who require care full time or assistance with daily living. There are some who haven't either heard about it, have some misconceptions, ideas, and yes, even a few think it's a little scary. It's a VA program so yes, I was worried too, I'll admit. I am hoping to write this out to answer some questions, provide some information on it for those who need it and clear the path of the unsure for others. Our process believe it or not, honestly wasn't bad at all. Y'all know I will shoot straight from the hip and tell you how it is!

When it first started, I didn't know anymore than just rumors that it was being put into place and getting set up. Our Federal Recovery Coordinator told me about it and being the upbeat and dear person she is, encouraged me to contact them. I called on several occasions when it had just started. When I mean just started, I mean like they had just turned the 1-800 number on and the people answering were just as baffled as I was. There was some confusion right at the beginning and to be honest with you....I really kind of checked it off my list of things that the VA had to offer. I had the same idea that many of you have of "Oh God, here we go again. Just another promise, but no follow through"! After the third call that left me filled with more questions that what I had to begin with, I figured that this wasn't for our situation. A month later, my dear friend Brannan at Family of a vet encouraged me again as well as our coordinators assigned to us. The requirements for the program were a bit confusing, parts still being adjusted and tweeked; leaving still quite a few of us out that didn't really fall in the guidelines.

As the time went by, the Caregiver Program was often brought up to me and I explained the reason the 1-800 number told me I didn't qualify. As many of you know that follow all the time, my husband is still considered in service although not able to serve. He hasn't served since December of last year with January's "bottom falling out" sealing the deal. Now with us, we have asked about the Med Board process for three years so we were kind of stuck in the middle of nowhere land up until this year. One of the requirements for the Caregiver Program is a medical discharge date or estimated date. I didn't have that, so I couldn't even fill out the application online.

After speaking to the OIF/OEF director, the best solution for us was to simply call and ask the Caregiver Program Coordinator/Director herself. We had otherwise fit the bill for requirements so to speak, and she felt like we really needed to pursue this. This proved to be the best way to get not only the information, but the correct information and believe it or not, I haven't had one single complaint at all about this program so far except that it leaves out many others like our Gulf War and Vietnam families. Now for those of you who are wondering like this question that came in "What the hell is the VA Caregiver Program?"

The Caregiver program, (the fancier name as it was created, the Caregivers and Veterans Omnibus Health Services Act) was created and signed in as a program that was ready for applications starting May 9th of this year. It is designed to help provide respite care, counseling, training, insurance for spouses (more on this here in a second) and a monthly stipend for those (person who is considered primary care giver to the veteran) who care for wounded veterans that require assistance in daily activities. This program is very monumental and one that was fought and pushed for by many. Currently, this program is only for those suffering from severe physical and psychological wounds that were sustained in the Iraq and Afghanistan wars that requires them to need assistance. I don't honestly know if the respite care coverage is the same for all, but for us it was 30 days per year I can use should I need it. If you do not have insurance for health coverage, you can qualify as a caregiver for Champ VA. This does not mean you can stop using your health coverage if you have it. Only if you don't have one in place and need insurance. The monthly stipend is based on the level of care, how many hours is determined by the tier that you fell in and the pay based on that particular tier.

Once the application was filled out, I mailed it in and it took about two weeks before it came back to our Coordinator. I was rather impressed with our Coordinator here. She stayed in constant touch with us through the whole process, let me know when she got our application after it was processed and kept us in the loop on the next steps. Those next steps included having a physician, registered nurse or mental health doctor filling out the portion that states the Veteran needs assistance for daily living. We really don't see much of our PCM so was worried, but my husband's psychiatrist knew of our situation, how bad he was and filled it out for us. Before I knew it, we were pre-approved and on our way to expecting the online training from Easter Seals who created the online and workbook training program.

Now to answer many of the questions of who qualifies, its for those who need assistance for daily living and can be for those with mental disabilities such as PTSD and TBI, for those with physical disabilities OR a combination of both. Just remember, this is for those who must have help in order to get through the daily chores of just living. I had some questions that went along the lines of using this to quit their jobs and stay home, although their Veterans were working still full time and needed no care. This program isn't for that. If your Veteran is able to tend to himself, is working and needs no help, this program isn't for you to be able to quit your job and stay home. Not trying to be rude or nasty, just being bluntly honest and let you know you will be turned down. Now there are some who are in Vocational Rehab, needing assistance at home etc in which you might be able to qualify for. Just because some of them work, there are many out there who need assistance at work, at home and basically everywhere. I can't answer who is and who isn't, you just have to contact your VA's Coordinator and ask. It's as simple as that.

Many spouses are not applying because they are unsure if they qualify. Much of the time, we don't stop to look at how much we assist our veterans in daily living. Stop and look at how much you do, and how much they do on their own. You will be asked a series of questions, so this is a prime opportunity to be honest. Familyofvet.com has a fantastic breakdown of the whole process and the answers to some questions on the Caregiver program. This is a great web source for those who are confused, unsure, scared or wondering how the process works. Once you apply, they receive your application...your start date begins the day they get that application. So for us, I filled out the application and it was received three days later on August 19th. My first check will be on November 1st, which includes back payment from the August date.

The only issue I had was I chose to do my training online rather than doing the workbook. I find it easier to get out of bed early in the wee hours and completed it with just a couple of hours. It doesn't take that long, but do try to pay attention and not guess on the answers. In our case, the Coordinator Director did our home visit with the nurse and asked me some of the questions on the training. So just don't breeze through it and not really know the answers because it might just come back and catch you. The problem I had with the training provided was there was only one small section that had anything to do with those of us who are dealing with the more severe Post Traumatic Stress and TBI Veterans. A bulk of it is medicine related, infections, bed sores, home safety etc. While I found that it was rather easy to navigate, easy to complete and was probably very useful for those with physical wounds...it kind of left us Caregivers who are full time that are dealing with the psychological wounds of war out. I think I was looking for a bit more in this training such as preparing a safety plan, what to do when they become belligerent and nasty, what to do if they are in a severe flashback. However, I have to look at it this way. Each of our Veterans are different, so even if there had been a solution, that solution might not work for all of us.

So out of all the questions, the dreaded Home Visit seems to be scaring many of you. I have to tell you, this weighed on my mind heavily. Will I be judged? Will my home be clean enough? Do I have everything spic and span? What will they say about the toys in the floor of my child's bedroom? The list and fear kept building up. Let me tell you, I cleaned as if there was no tomorrow. If you came into my home and ran a cotton swab across my floor the only thing you would have found was cleaning products! I organized, I scrubbed, I moved things, I scoured to the point I barely made it through the home visit because I was so sore. I threatened my children with boot camp if they dropped food or drinks on my newly scrubbed and polished kitchen floor, and threatened if they dumped toys all over the place! I had medications nicely organized, laid out in particular fashion and made sure my food pantry and cabinets were those of someone who had severe obsessive compulsive disorder. Readers, I cleaned things with toothbrushes and in places that a normal human being wouldn't even look at, but let's be honest with ourselves. This is the VA we are talking about. We have been raked over the coals so badly, I was so afraid that one little place would cause me to fail our home inspection. It was silly, I knew I was overreacting but still couldn't help feel we were being placed under a microscope. I know that our VA probably doesn't like me that much, and that's ok. I just didn't want them to come into my home and say "Lord, not only is she a pain in the ass but her house is dirty too!"

They didn't even look at any of it. Not anything. They came straight in, made a comment my house smelled really nice, introduced themselves to my husband and sat down in the living room. That was it. There were some questions after they took my husband's blood pressure and weight, like "Do you have smoke alarms and are they working?, A safety plan for emergencies and fire evacuation?" etc. I was so disappointed! Now my house is usually clean and neat, but sometimes slightly cluttered especially since we have been working on paperwork and records for the Med Board. They would ask me a question, and I was willing them mentally to PLEASE go check. I think one of them asked me where the bedroom was located and I said its down the hall and to the right, you want to go see? Hahaha! After all was said and done, they left. We both kind of sighed a sigh of relief, but was like "Is that is?". All that worry, all that cleaning, and all that time spent worrying about the what ifs was pointless. Yet, my house was clean and things had been done that needed to be done for a while now so it was just a good excuse.

I think the purpose of the Home Visit is just to ensure that the home is safe, is a clean environment, has the required safety items like railings on stairs, handles in the bathrooms etc which are all very important. If you need those things, they will help you get those in place. Also, they want to make sure that the Veteran is well taken care of and you aren't abusing, mistreating or letting them live in squalor. Now to speak for our Veterans, these visits can be a little challenging. My husband doesn't really like people he doesn't know in our home. He was very nervous, pissed off, and if looks could kill? They would have had to bury these people twice. His paranoia was evident that day and he was extremely agitated they were here. The other downside of this program, is they will come back every three months to check in. That is mostly just to be sure there aren't any changes, things that are needed, and of course to be sure that the Caregiver is still taking care of them and they don't have them duct taped to some wall down in the basement. (That's a joke people). The thing that bothered my husband the most is that he didn't know these people, the nurse that was required to be here will be a different one every three months. I have to admit....I really didn't like that either. I think for all of us Caregivers, that can be a little nerve wracking because you will see someone different each time and you don't know who they are. For Veterans suffering paranoia on high levels, this can be a bit challenging.

Overall though, I promise you it's not that bad. Most of us who have applied will tell you the same thing. Some have bad stories, some are good. I think it just depends on who is the Caregiver Coordinator and fortunately for us, we seem to have a pretty good one who cares and seems to take her job seriously. It's worth all the paperwork, the wait, the training and the home visits. The issue we are facing right now, is not many people are applying. This is a good program with a lot of beneficial things involved, and if we don't get people to apply....I am afraid the government will come back and say "well, obviously there isn't a need for this and we should cut the program or funding". We don't want that! If you care for your veteran, no matter who you are....I encourage all of you to apply. For those of us Reserve and National Guard programs, and have a DD-214....see if they will accept that as your discharge date because they can use that as these are totally different entities than that of Active Duty components, if their injuries happened during active duty time served.

Check out Familyofavet.com , there is great information and links for you to look at. Another one is listed here. I have been there and done that with the VA, trust me. I know its scary, I know they can be one of our biggest obstacles when it comes to our Veterans, but I think they might have just gotten this one right. I feel I did better with dealing directly with our Caregiver Coordinator than wasting my time with the 1-800 number but you might find it differently. The National Caregiver Support Line at 1-855-260-3274. You can find the application here and more information. Stop a few minutes and look over it. Talk with your VA Caregiver Coordinator (ask through the operator or your OIF/OEF clinic) and just see if its something that can help you. I think out of all of it, I know that I can call our Coordinator and just talk. If I need counseling, I feel I can get it. Although I know I contribute to our home, work my butt off seven days a week, I feel that with the stipend I am financially contributing and that makes me feel good. For those that say well, I might only be on the lower tier...well, my thoughts are that is one level up from nothing, which is where you are right now.

Hope this helps relieve some of the worries, the stress and confusion about the program. The worst thing that can happen is you apply and they say no, so you haven't lost anything by just making the call. It took a lot of pushing, work and lobbying for this program to go into place. Let's thank those who made this possible by applying for it and utilizing it. Hopefully, in the next couple of years this program will be available to our Gulf War Veteran families as I know they are working on it.

As Always,