Why Are We NOT Paid?

Yesterday was one of THOSE days.

You know the one that starts out crappy, and it goes downhill from there.

I took everything in stride all day...went with the flow and just kept going.  After all, that's what I do.  I ALWAYS find the bright side of things.

Yesterday was no exception.  Even with things being crazy and it being a big time MONDAY...I still found the bright side of things.  There's always something good in EVERY bad situation.  

YOU JUST HAVE TO FIND THAT RAY OF HOPE.

So, what happened? 

Well, there was an incident at work that caused us to scramble to open.  The ray of hope there was that it didn't cost as much as it was thought at first.  

What else happened?

Not much during work, but after work I had an appointment.

And, I discovered something.  I'm not quite ready to spill on that, but it does lead me to the incident that had me literally IN TEARS.

You see, having a family member with a Traumatic Brain Injury is a ROLLER COASTER.  You can be on top of the world one moment because things are finally starting to settle down.  Things are getting better and you THINK that everything is under control.  But, the problem with a TBI is, that rug under your feet...it gets yanked BIG TIME.  There is no set schedule, there is no routine, there is no getting used to things.  

EVERY DAY IS A CHALLENGE.  Every day is unknown.  Yeah, you may be in a routine with the daily tasks, but there is always that wrench that is just standing over you, waiting to get thrown into your plans. 

That's something else that you learn...YOU HAVE NO PLANS.

I read an article yesterday about military spouses being thrown into the role of "caregiver".  This article didn't state anything about PTSD or TBI, but just in general the role of "caregiver".  

I have to say from experience...

The role of CAREGIVER is broad and definitely NOT DEFINED.  

For some, it's taking care of the household and bills and kids and just everything while the spouse is deployed.  For others, like me, it's the literal role of CAREGIVER.

We are given the task of taking care of our spouse when they have a TBI, when they have PTSD.

I believe, as I have always believed, that God chooses us for these roles.  He doesn't give us more than we can handle.  There are times when we think we can't handle any more, just to get a little more thrown on our already full plates.  

When I married Mike, I said for better or worse and in sickness and in health.  I loved him 20 years ago, and I love him today.  I love him with our without his TBI.  But, there are times it is 

REALLY HARD.  I'm not saying it's hard to love him, that is the easiest thing for us right now.

But it's hard to live this life that God has given me.  It's hard to watch someone NOT be able to handle things that we both know he used to be able to handle.  

Emotions is one of the hardest things for him to control.  The combination of PTSD and TBI just magnifies the problem.  

I often find myself apologizing to people because of his outbursts.  I frequently have to get us out of a situation because he has no control of some emotions.  It's not his fault, and I know he tries.  I also know that this kills him because he remembers what it was like to be able to control the emotions.  He knows EVERY DAY that something is wrong with him and he has no control over it, nor can he fix it.

Back to God choosing me.  I've known for a long time that I'm here for a reason (that's another post that I haven't had the courage to write yet).  I know that God has chosen me for something...I just don't know what it is, and I'm not sure I want to know what it is, because then I would be working towards that reason.  

All the soldiers coming back from war with PTSD and TBI...Yes, I know you didn't ask for this.  I know that your spouses didn't ask for this.  I also know that you and your spouses were chosen for this by God.  My faith in God is very strong.  I don't question him.  I do, in my times of despair, question WHY?

Why was I chosen for this?  How am I so strong to deal with this?  

The incident yesterday, again, put me on that line.  You know, that line where you question, "How much more can I take?"  I thank God every day for the people in my life.  Because without their hand and shoulder to lend me strength, I don't know if I could keep going.  Yet, every day I wake up and fight again for my husband.  Every day I wake up and deal with whatever new problem that comes around.  Every day I wake up with HOPE.  Every day I wake up LOVED.  Not only by my husband and family but by my wonderful friends and coworkers.  

I have learned to deal with the role of  "CAREGIVER".  I accept this challenge and this life with both eyes, both arms, and my heart WIDE OPEN.  

But, on days like yesterday...I wonder...

WHY ARE WE AS CAREGIVERS NOT PAID BY THE MILITARY FOR OUR SERVICES?

Why, when a civilian has a TBI, do they have a nurse or social worker come into their house and help them with the same things that we spouses do?  Why does the Veterans Administration take advantage of us spouses?  We care for our spouses, we make sure they get their meds, we make sure they get to their appointments, we make sure the bills are paid, we make sure that they can lead as normal a life as possible with the new disabilities that they have.  This is a 24 hour a day, 7 days a week, 365 days a year job.  In some cases it's a FULL TIME JOB.  But, in my opinion, the Veterans Administration takes advantage of use.  We don't get recognized, we don't get paid (by them), we don't get any extra benefits.  

WE TAKE CARE OF OUR VETERANS BECAUSE WE LOVE THEM.  WE MADE THAT VOW TO THEM WHEN WE MARRIED THEM.  

FOR BETTER OR WORSE, IN SICKNESS AND IN HEALTH.

I'm not saying that I want extra money, though it would be nice.  I'm not saying that I don't like my life, I LOVE my life, I just don't like certain aspects of it at times.  The good times far outweigh the bad.  There are ALWAYS MORE SMILES THAN TEARS.  But, just once, I would like the Veterans Administration say, we recognize the job that spouses do, and we couldn't do our jobs without the spouses.  Here's a little something for all your hard work.

*OK...end of my little rant...yes it was one of those days where I was in tears and just needed a HUG*

So What? Does the Military really care?

You know, you hear of the soldiers with TBI and they get the treatment and the “classification” IF their TBI was actually diagnosed while they were still active duty.  But, what about those that retired right after they come back?  What about those that it didn’t even cross their mind that they might have gotten injured, and it was found out after they retired?  We know that my husband has a TBI; we know that he has PTSD.  The PTSD has been verified.  With the TBI, the best we could get out of the doctors is “it may or may not” have been from their service.  The question I have is this.  Where the hell else would my husband have gotten his head shaken so bad and on such a regular basis that the ventricles closed up and he has Normal Pressure Hydrocephalus.  Does anyone know why we’re having such a hard time getting the disability, and why we’re slowly drowning in our bills?  It’s because after his first surgery for a shunt, he became so ill, that we really were not worried about filling out the “required paperwork” for his disability.  Really, Uncle Sam…my husband means the world to me, and if he is in the hospital with the doctors baffled as to why he was so sick to begin with (they found the infection after he was in the hospital for a couple of days) why would you think that me sending in the paperwork with the exact instances of his experiences on time?  So, of course, all disability from the military got denied.  ALL OF IT!  The best we can hope for now is that they at least expedite his appeal, and from what we’ve been told, the “expedite” service can take at least two years!!!!

Now, because his TBI has not been “classified” as a service related injury, we do not (let me repeat that…DO NOT) qualify for any type of extra help.  He doesn’t get any therapy whatsoever for his brain injury.  Everything that has been done has been done by me, and there’s only so much that I can do.  Yes, I’m classified as a caregiver for my husband, but because he’s high functioning with his TBI, and we’ve found small ways to cope with this, and (oh yeah let’s not forget this one) it’s not “related” to his service YET, I get no outside help.  I pay the bills, I handle all the appointments, I help him with his schoolwork because he is determined to not let his TBI stop him.  So, on top of all that, I also have a 2 year old to take care of and a house to keep clean.  And let’s not forget the three times each week I stay up until 3 AM to help him with his homework, and then get up at 4 because our son doesn’t sleep through the night yet, and then again get up at 6am because that’s what time my son wakes up for the day.  There is very little time to take care of me.  I don’t get the respite care that other people with TBI get.  I don’t get the respite care that we so desperately need.  Instead, I’m a mom, a caregiver, a tutor, a secretary, a wife ALL THE TIME!

There’s only so much a person can handle until they break down, and guess what…I’m only holding on by a hair.  We’re in the process of losing our house, and very close to losing the truck also.  We haven’t had any funds to get more chickens for our farm because they were all killed last year while he was in the hospital.  I don’t know what it’s like to be able to take a day and get a manicure or pedicure, or even get a haircut and spend time just with me.  I’m too busy taking care of my husband and my son.  When I married my husband, I said for better or worse, and in sickness and in health…and I’m still here and would never leave my husband.  But, I REALLY REALLY REALLY wish there was some way for us to qualify for the respite care that others get…it all stems back to not being classified as a “service related” disability. 

I get on average of about 3-5 hours of sleep a night.  I help my husband with his homework so that he can at least get some sleep.  To help with our finances, I’ve started entering sweepstakes and contests.  A lot of those prizes that I do happen to win, I usually sell to pay our bills.  There are people that are able to go to Washington and tell the president, “Hey, we need help.”  And they are great advocates.  But what about those of use that are barely surviving?  What about those of use that have fallen through the cracks?  When do I get my respite?  When can I take a day and just relax?  Instead, I worry constantly about our bills.  I worry constantly about my husband.  I worry constantly about how to take care of our son.  I’ve become very thrifty.  I’ve learned how to use coupons.  We eat very cheap, like most of the time it’s rice and beans.  We let other things go, like my dental work.  In order to get our dental insurance it would be another $77 a month our of our already small checks.  So, I’m afraid to smile because of a broken tooth. 

I have a wonderful husband and a wonderful son.  My life has been very blessed.  At least my husband can function at the level that he does.  He is able to go to school with modifications.  If you were to look at him, you wouldn’t even know he has a brain injury.  But, when you talk to him, and he forgets what you say or you see him walk, and he doesn’t walk a straight line, that’s when you know.  That’s when you realize that any sense of normal left my life three years ago when his brain injury was detected.  Before then, he was taking on average of twenty aspirin a day, just to deal with the headaches.  You see in the papers, that the military is taking steps to get the soldiers their disability sooner…but how many can even hope to hold on to what they have when they’re unable to do the things they used to do.  What about the ones that are struggling to just SURVIVE?  Not to mention, what about those that the military agrees are caretakers?  Do I get a paycheck for taking care of my husband?  NO!  Do I get any days off, or any time to myself?  NO!  Do I get any recognition for all that I do or training to make some of it easier?  NO…everything that I’ve learned, everything that I use to help us, I found on my own, and have devised on our own. 

My husband served this country for 20 years!  He was in two wars, and has over ten different combat patches.  What do we have to show for this?  Over draft every week trying to survive, arrangements with the different bill companies to pay past the due date, and one VERY VERY VERY tired wife.  So, while everyone is focused on those soldiers that get injured in active duty, maybe they should also pay attention to those that the injury doesn’t show up until after they’ve retired or been discharged?  And especially those that don’t live close to any VA Hospital for the therapy that would benefit them?  There is a great need to look at those soldiers that are barely surviving on their own, without all the programs that are “designed” to help them!  Maybe our military should remember those soldiers!!  Maybe the military should also remember those that they have already said are caretakers, yet we don’t get paid one single penny!!  Those that are slowly falling apart because they’re doing way more than is humanly possible!  Maybe you should notice those spouses?  Notice that they are slowly falling apart!!

Chairs4Vets is starting to become a reality!

Many of you might remember last year when my husband was critically ill.  The one thing that bothered us the most about the VA hospital was the lack of wheelchairs for inpatient use, or for people needing one for day appointments.  There are many veterans that are otherwise able to get around on their own.  BUT, if they're seriously ill, or unable to navigate the long halls of the VA Hospital, there is usually around a two hour wait for a wheelchair.  I don't know about others, but we get to the hospital about 30 minutes before the appointment, and don't have time to wait. 

It was during this frustration, when my husband was barely able to walk, that we came up with this idea.  What if we started a charity to provide these wheelchairs to the VA hospital on a regular basis.  Thus, Chairs4Vets was born.  

Next Tuesday, July 19, 2011 there is going to be a donation of a wheelchair from Beta Sigma Phi to the Fisher House in Houston.  This came about because I had mentioned to one of the members our dream of providing wheelchairs to the VA hospitals.  They wanted to provide one to the Fisher House because they are also going through the same problems as the VA Hospital...no wheelchairs for the visitors.  You're invited!!!
It is at the Fisher House, next to the VA Hospital at 6:00 PM. (I think....will update if I'm wrong)

I'm really excited about this because I get to see my wonderful sister soulmate Egg.  We're going to probably spend the day together and of course be us, which is totally unique.  But also, I get to see my dream slowly come to life.  Egg and I will also be doing a joint blog/tweeting thing-a-ma-jig (she doesn't want it to be a tweetup) somewhere...I really don't know where yet, but it's gonna be in Houston.  So, for those that live in Houston and have been waiting to meet me...guess what...I hope this is enough advanced notice!!!

Of course, as usual, I will have pictures of Egg and I, and of course there will be totally unique, silly pictures because that's how we roll! Hope to see you guys there!

Would you like to help a non-profit?

Hello everyone!  I have a friend that is trying to get some funds for their non-profit charity and I am asking you guys for your help.  All it takes is a quick "like" on facebook and then for you to write on the wall "I vote for Chairs4Vets". Here's the details:

Please go to : 352MediaGroup on facebook

"like" the page

Then write on the wall : "I vote for Chairs4Vets"

That's it.  This ends on January 31, 2011 so this non-profit really needs a lot of help.

A bit more details: 352MediaGroup is going to give $1000 to the charity with the most votes at the end of the month. 

About Chairs4Vets : In the VA hospitals across the county, the VA hospitals are struggling to provide wheelchairs for daily use in the hospital for the Veterans.  Why are they struggling?  Well, they get the funds, and new wheelchairs.  But, as soon as the wheelchairs are put in use, they disappear.  There are people that need them for appointments (like when they're sick or have just had surgery etc) and some have had to wait up to two hours, or walk to their appointments/clinics.  Chairs4Vets hopes to help the VA hospitals with this problem by providing wheelchairs on a regular basis.  There is always going to be a need for wheelchairs at the VA hospitals, and there are always going to be Veterans that need the wheelchairs on a temporary basis.  So, please help them.

Thanks for all your help!

The Things You Miss

You never know what you've got until it's gone...isn't that what they say.  I'm feeling a big melancholy today because I realize that my DH isn't as strong as either of us would like to believe.  They now want him to walk with a cane to help with the unsteadiness, and I hope this is only temporary.  To think, less than five years ago we were carefree and doing everything.  Now, it's work a little, rest a lot.  I've always been on the frail side and pushed myself to the limits, but I know my limitations and when I get there.  It hurts me to watch DH try to go past his limitations and then hurt more later.  I'm angry that the VA will not admit that this is a WAR INJURY!  I'm angry that we have to fight to get the benefits that he deserves!  I'm angry that my youthful, energetic husband has to work hard just to do the little things.  It's not fair...he has a one year old little boy, we should be playing outside with him everyday and going to the lake and going to the park and fishing and all the other things that little boys should do with their daddy's.  Instead, Little Monster plays inside on the floor with his daddy. 

We're working around the limitations of this family, but still, why should we have to fight for the benefits for Post Traumatic Stress Disorder from Iraq, the Traumatic Brain Injury, the effects of having a loved one that still has part of his soul thousands of miles away.  I miss the man I fell in love with, happy and carefree, who used to laugh often.  Now, it's different...the signs are subtle, and if you didn't know him before the war you wouldn't notice that much, but I KNOW.

I guess it's because it's that kind of day...it was beautiful and sunny outside and we really couldn't do anything.  Our goal for this week, even though it's a small goal, it to go to the park and maybe take the boat to the lake to just go out on the water.  I hope we can make that goal!