As I look back on 2010, it is no wonder why I find myself exhausted and burnt out. It seems as though I have fought more for things in the last few years than I ever have for anything in my life. It is no wonder to me that so many of us have given up our jobs, because advocating for our wounded soldier is a HUGE job all in itself. There are many days when I just want to give up, because I am just so sick of it all and It's so unfair. I often wonder how I am going to do this for the rest of my life. My husband who has TBI/PTSD/Periodic Paralysis.. will need to be taken care of for the rest of his life. Who will take care of me? I often fear that social security will not even be an option for me once I am older and need care because I am not working, therefore I am not paying into it.
How can I work when my husband can't be alone? He can drop at anytime due to the paralysis, yet the VA does not consider him to need much in terms of respite hours. We get 10 a week, and yes I am thankful for the little we get, but it in no means compensates for the amount that I put in on a regular basis in his care. I feel like the VA doctor's really DONT get it! They say they do, but when he has appointments and they ask how things are going, they ALWAYS take his input over mine. You would think that they would listen to me since he does have brain damage, yet I am often shoved into a corner and ignored. Luckily I am not a quiet person and have no problem making myself heard, but I tell you they want to push me off as much as possible. It really upsets me that caregivers are treated so horribly. When I recently saw the caregiver brochure that the VA provides, I just was in disbelief. The cover of it has a bunch of OLD people on it! Now, I am not going to disrespect our older veterans, but COME ON! we have so many younger veterans these days, yet the resources available do not reflect this.
I am tired of my husband receiving substandard care. I am sick of fighting to get him an appointment in any kind of acceptable time frame. You would think a 100% disabled Veteran would be the first priority, yet often times we wait over a month for an appointment, and the wait for a mental health appointment is double that. My husband has been told he has severe PTSD, yet his counselor can only see him once a month, if that. I am left trying to pick up the pieces and take on skill sets that I have not been trained for. Somehow I feel like I have become his ST,OT, PT and yet I don't have a degree for any of those things. In fact, I have never been trained at ALL for anything caregiver related. We did not even have the normal hospital experience where you can at least learn something. My husband has actually NEVER been in a hospital since he was injured, yet he has severe damage to parts of his frontal lobe, and I am just magically suppose to know how to handle it all, not to mention the PTSD and Periodic Paralysis.
Everything that I do know, has been of my own doing and mainly been found online. I would say that is good and bad. I am glad that I have access to so much information at my fingertips, but what if that isn't enough or I find something that is just outright wrong and don't know it?? Where is the accountability within the VA? Why are there so few programs for caregivers?? Someone really needs to wake up realize how much we do. Yes, I am aware of the caregiver bill that was passed last year, but when will that ever become a reality?? If the VA is in charge of it, I am guessing it will be another year before we see anything, if that. I wish I had more positive things to say, but I really have not had a good experience with any of this. In fact, my life has spiral down so much from before he deployed and was injured. Thank goodness I believe that God has a plan in all of this even if I don't have a stinkin clue what it may be. Thank goodness for the Wounded Warrior Wife club out there, even if none of us wish we were part of it. I look forward to what 2011 has in store for us, and I hope and pray it is MUCH better than 2010 was.