Life with TBI

You know...I've said this before, and I will say it again...

Life with a person that has a TBI is not fun. 

Yes, there are good days, but lately the bad days outnumber the good.

We have just been coming off of a bad MONTH!!!

And, I got my usual (estimated) 4 hours of sleep last night and was woken up by someone laughing really loud...we won't say who. (wink)

So, what have I been doing?  Well, homework for one.

And, scrolling Facebook (that's a whole other post).

While scrolling, I came across this particular post from BrainLine.org about Trust.

You see, since DH had his surgery, and we found out that there was brain damage, it has been a battle for us.  Lately, there is no trust.  He has taken to password protecting all of his gadgets, and of course deleting text messages etc.  All my life it's been hard for me to trust people to begin with.  It is a very precious commodity that I do not give out often.  

The man that I fell in Love with is gone.  What is left is a person that is angry all the time, usually at me.  I live in a small town where there are no support groups that I know of.  And usually, when I turn to my friends, they say to leave him.  How can you leave someone when you KNOW THAT THE PROBLEM IS THE INJURY AND NOT YOUR SPOUSE?  

I know that he regrets yelling at me, most of the time.  I know that he is having a hard time understanding his feelings.  And to top all that off, is the added stress of graduating college (I'm so proud of him) and not being able to find a job.  It takes all of my strength to talk him down from a rage.  And, when Abby from BrainLine.org mentioned that there was "a look in his eyes" that she had never seen.  I KNOW THAT LOOK!!! I've experienced it.  And it is dangerous at times.  

When DH looks at me like that, I KNOW that it's not him, his eyes literally narrow.  It is a scary look, but I've learned to cope with it.  Yes, my marriage isn't perfect and I know I'm not the easiest person to get along with...but I also know that it takes strength to stay in the marriage.  Everyone tells me to leave, but I can't leave, because I know that there are times when the old hubby will filter through to the surface, and he will laugh and make jokes about me.  And those times are what keeps me going...however hard it can be.

Living a Life of Uncertainty

It's been five years since my husband and I heard the words Normal Pressure Hydrocephalus.  And our quiet life that we had planned went out the window.  Hydrocephalus basically means "water on the brain."  There are basically two types of hydrocephalus, which are: congenital and acquired.  Congenital means it is present at birth, and acquired means just that...it has been acquired either through injury or illness. 

When I first moved in with Mike, he had headaches EVERY. SINGLE. DAY.  They were so bad that he was taking an unusually large amount of aspirin.  He had started getting the headaches while he was in Iraq.  I insisted he go to the doctor for these headaches, and that's when the doctor sent him for a MRI, and it was discovered.

During all this time, Mike was forgetting a lot of things, he was falling a lot, and very unsteady on his feet.  We believe that all the concussions that he was suffering in Iraq from the constant bombings is the reason he has the hydrocephalus.  And because it took four (yes, FOUR) years for me to make him go to the doctor, he has suffered some brain damage from this pressure on his brain.  

Things kinda went fast forward after we received the diagnosis of Normal Pressure Hydrocephalus.  He was scheduled for his first brain surgery on April 15, 2010.  This was for the placement of a VP shunt, to drain the fluid from his brain, since the ventricles that were supposed to do that were completely shut.  

The first shunt got infected.  Mike never recovered from that surgery, and was very ill during that time.  Within two weeks, he could barely get out of bed.  When we ended up back at the VA hospital, the doctors ran blood tests, and they all came back normal.  The doctor decided to admit him because he could tell there was something wrong.  After two days in the hospital, the blood tests FINALLY showed the infection.  Mike was scheduled for surgery the next day to remove the shunt.  

This started our roller coaster ride.  After the shunt was removed, the fluid was building up in his brain again.  But, the doctors could not insert another shunt until AFTER he was free of the infection.  And they wanted to make sure, so it was 6 months before they inserted another shunt.  We were lucky!  Yes, LUCKY.  Mike has Normal Pressure Hydrocephalus, which means that he was able to be discharged from the hospital during this time.  If it was not Normal Pressure Hydrocephalus, they would have had to keep him in the hospital during the time that he was treated for the infection, and he would have had a very long hospital stay. As it was, Monster pretty much grew up in the corridors of the VA hospital in Houston during this time.  

After the infection was gone, and they inserted the second shunt, things got back to our new normal.  Mike has the days of being "wobbly" and he still has the constant headaches.  The damage was done though to his brain.  We will always have a hard time with him learning new things.  He will ALWAYS carry the diagnosis of "Traumatic Brain Injury" and he will always have the brain damage.  

We live the roller coaster life of hydrocephalus.  Every time he gets sick, I worry if it's a shunt malfunction.  When he has a headache worse than normal, does that mean that the shunt isn't draining as well.  He will always have the bump on his head where the valve for the shunt is.  He will always have the hole in the back of his skull from the first shunt.  

This isn't meant to be a "poor me" post, because we're incredibly lucky with our lives.  We have each other, and we have Monster.  This is meant to be an "eye opener" for those that think that hydrocephalus is no big deal, because it is a big deal.  This is the first of many posts of what it is like to live with someone that is "special needs", because it's not just kids that are special needs.  We live a "special needs" life, and we live it to the fullest.  

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*

How Does A Couponer Teach Factoring To A Visual Learner?

If ya'll have been following my facebook page, you will notice I've been mostly gone these past couple weeks.  Where have I been?  Helping Mike with Algebra.  

Now, first, I'm going to tell you that I kept telling him that it was too fast paced for him in the summer.  His words..."I already know this, I just failed the final last time." 

FAMOUS. LAST. WORDS.

 So, he's pulling out what little bit of hair he has left, and I'm on the edge of pulling mine out.

And now we get to...

FACTORING!

And how does he respond to this??? 

Not well.  And, this semester, I decided that I'm not going to argue with him over this.  When he starts arguing with me or raising his voice, or just agreeing with me to get to the next question without the understanding, I have walked out, until he calms down and asks for my help again.

(Yes, there's a story to why I'm walking out and making him calm down!)

So, now we get to the hard question tonight...Ready???

a⁶ – 3a⁵ + a – 3

How can you teach a visual learner how to factor this when there's that tricky invisible 1 next to that last a?

We tried writing it down on paper...we tried factoring the first part and then instead of the parenthesis just substituting an x...we tried just about every trick I knew.  He started agreeing with me...yep...whatever you say.  I walked out in tears, and he's slamming things around.

Then it came to me.

VISUAL...he has to see it.

Soooooo....I asked him to come to the living room and brought out all my little shampoos and conditioners that I had been able to get. And...I put them down like this.

Doesn't this look like the problem.  Imagine the red bottles are invisible 1's and the bottles up top are the exponents.  This was the problem.  Now to break it down to how he could understand it.

 

   

I needed to put it to where he could see the parenthesis and the invisible 1.
So it was broken into two different equations to factor. This one is
a⁶ – 3a⁵

 
This was the second half of the equation which was

a – 3

Now the trick was to show him how AND why there were not TWO of the a - 3

He kept wanting to take the a of the second equation, and I'm pulling out my hair to try and show him why he couldn't do it that way.  Soooo....now that I broke it down into visible items that he could see, he was with me this far.  So, I then proceeded to factor.

I proceeded to take out the

a⁵

^{And that left him with the} 

a – 3

^{So, he could see it with the invisible 1's there...those are the red bottles.}

^{And for this one, I had to factor out the invisible 1's.  This was all to show a point which he just wasn't grasping.}

^{So, now we had a problem that he could semi-understand.}

a⁵(a – 3) + 1(a – 3)

Yes, this is what kept tripping him up...Why was there NOT two of the 

(a – 3)?

I then showed him that even though I took the

(a – 3)  out of both sides, it was still attached to a variable on each side.  And that was what was catching him.  He could factor if it was just one number or one variable, but the parenthesis messed him up...until I showed him with all these bottles.  And this is the final outcome.

^{After TWO frustrating hours, it took 20 minutes of me showing him with bottles of shampoo and conditioner how to do factoring.  And this is how the answer looks with the numbers instead of the bottles.}

 

(a⁵ + 1)(a – 3)

And there was a light bulb that was shining so bright above his head, a smile on his face, and understanding in his eyes.  

And, this my friends is how you teach factoring to a visual learner!!!!!