Tuesday, January 25, 2011

Something for Me

Today I did something that I should do more often.  I took some time away from my caregiving and role as a Mommy and went and had a massage.  Before Christmas when I was at the mall shopping there was a kiosk for a new massage place coming into the Tricities.  I signed up for their MUCH reduced price to give them a try.  I had to reschedule my original appointment a few different times due to the fact that something is always changing in this house and every day is different and unpredictable.  I am glad that I had a chance to relax and let some of my stress go, because honestly the last few weeks have been incredibly rough.  After my massage I went and grabbed a quick lunch alone and then drove home because I had things to get done and I needed to grab the baby from my friend who graciously offered to watch him for me.  My neck hurts less than it has in months, and while that is exciting now I am frustrated that it will go back out at some point.  My hips also go out because my feet are so flat, and unfortunately there is nothing I can do for that. 

I think as caregivers we often put ourselves last constantly, but today I put myself first and it felt really good to let myself focus on me for once.  :)  I hope that if you are burned out and have not taken any time away from it all, that you will pay the money and do something small, even if you just pay someone to watch the spouse and kiddos for a bit so you can have some sanity "me" time.  I know I hope that I will be able to do something for myself more often than I have been. 

Saturday, January 22, 2011

One of those days

Today is just one of those days when I REALLY wish my husband could/would do more.  I know he has his limitations, but sometimes or really a lot of times I feel like he COULD do a few things, and he just refuses to even try.  I hate that the weight of everything all rests on my shoulders.  I will ultimately be the one that is responsible for seeing that the small repairs to the house happen and that we get the house up on the market by the end of the month.  I honestly am just so overwhelmed by it all, not to mention that any progress I have been making is easily undone by either my hubby or the baby.  I also can't get as much done as I want to because I am constantly having to stop to take care of the baby because hubby can't handle him.  I struggle with knowing how much to ask/make hubby do and where to draw the line with his limits.  It is incredibly frustrating.. anyone else struggle with this?

Thursday, January 20, 2011

Damn VA!

Warning- This is a rant..

So for the most part, I can put up with the crap from the VA, but I am sick and tired of them giving out crappy excuses for not doing their job.  Today we got a phone call from them canceling an upcoming appt that has been scheduled for like over a month.  Their reasoning was that the provider needed to be on an interview board so therefore he could not keep the appt.  This is the SECOND time this appt was scheduled and now canceled.  Oh and to top it off they have him on a waiting list for another one because they aren't allowed to schedule him out any farther than 15 days and those are already booked solid.  What happened to Priority Group number 1 for being an OIF/OEF Veteran?? Seriously It is ridiculous!! Not to mention my husband should have had blood work done MONTHS again to check some levels for some new powerful meds he is on and they have not once checked them.  Thank goodness I keep an eye on him and know what to do in case of an emergency.  There are some other cases I know of as well that going on with other people I won't mention, but lets just say that these Veteran's who have served our country with honor and dignity are NOT being shown and given the same thing in turn.  The VA sees you as just another number and I am incredibly sick and tired of it!

Wednesday, January 12, 2011


Okay, so this is a warning! I am venting on this entry because I am just FED UP!  I am so exhausted and tired of fighting for the things that we should not have to fight for.  I know too many of you understand, and that in itself is upsetting to me.  What happens when Veteran's are not taken care of?  Everything in their world starts to fall apart, whether it be their own self- esteem of the well being of their families and those who take care of them.  I have watched too many marriages crumble because the caregiver was not supported.  Luckily, I am more resilient than some I have met, and I thank God for that.  Do I like that I struggle daily to keep on top of everything? No! However, I love my husband and It is not his fault that we are in this situation.  He did nothing wrong, in fact he did everything right and was still punished for it. 

I am tired of asking the VA for things that should be easy to receive due to my hubby's medical conditions.  I don't know how many times I have asked for a better wheelchair for when he is paralyzed, do I have one yet? No! Of course I asked like 5 months ago, so I guess it hasnt been long enough yet.  I don't really know what their excuse is, but I am sick of it all.  At this point I am ready to write off his doctor's here and just get the crap outta here.  Of course we are already in the process of doing that, but why should we have to move to receive appropriate care?? It seems kinda ridiculous, but yet here we are getting ready to move so that he can have access to the things he should have been getting the last 4 years.  Why does it take 3 years to get them to finally fee base out some local care?? Unfortunately they are now too late as we are on a waiting list for a TBI/PTSD program in Bethesda, MD.  It is sad that we have to go that far for a decent program and treatment. Anyone else out there having similar problems? Feel free to chime in and leave me a comment..

Saturday, January 8, 2011

Birthday Time

Well, yesterday was my birthday and I gotta be honest, ever since the injury I never really look forward to anything that has to do with my husband having to remember something for me.  I have learned to expect nothing, so that if he totally forgets It's not a big deal and I don't get hurt.  I really wasn't expecting much, but this time he decided to send me away at a friend of mine's suggestion to get my hair and makeup done for our date.  I was really surprised that he was okay with this, because he usually hates us spending much money, because we are on such a tight budget.  I also hardly ever do anything for myself.  He comes first almost always and the kids as well.  I am not a very primpy girly type so I wasn't looking forward to it, much to my friend's dismay I am sure.  I was not a fan of the makeup job she did, mainly cause I think I was allergic to it, but I did love the hair cut and curly hair.  It is important to remember to take care of ourselves, yet I find that most people don't understand the financial implications involved, or the fact that we are just plain exhausted so much of the time that we would rather get a nap in than anything else.  I don't know about you, but I do so much paperwork along with the daily grind of making sure he is eating and taking his meds as well as taking care of the baby (he is one) that when I do get some down time, I just want to rest. 

I planned a simple evening for us to celebrate my birthday.  I feel so much older than I am due to the stress of the last four years, but we did actually have a fun time which was a nice change from our normal.  We went to PF Chang's and enjoyed a meal and took our time eating it.  It was nice that the baby was with a sitter and being taken care of and that we could just relax and enjoy some normal conversation without him getting upset or yelling.  I had thought we might go to a movie, but he was really exhausted after dinner and we have plans today with some family and a few friends so I didn't want to wear him out.  We decided to skip the movie and come home and get some rest so he wouldn't be exhasuted today, and I think he only slept half of the night before he had a horrible migraine (dang TBI UGH!)  Here's to hoping today will be a good day for him. 

Thursday, January 6, 2011

A New Year

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.