Secondary TBI

TBI wives will know what the title of this post means. It's a term we use with each other as our best way to describe what has happened to our poor brains and it's met with a laugh and a nod as other TBI wives know what we're talking about.

Secondary TBI is felt when we get to that point where information, ideas, and 'things to do' start falling out of our brains. It's when we have filled our brains with SO MUCH that anything else leaks out. We don't control what leaks out, when it leaks out, or how much leaks out and we only discover it's missing when we are reminded of what we forgot. At first it happens slowly and we may think "Man, I better get more organized" and we write things down and program our phones. Soon we forget where that sticky note is and forget to enter something into our phone and after that happens over and over we panic "What am I going to do??? How can I stop this?". Following our failed attempts to stop this inevitable process, when we've gotten so used to having to make excuses to everyone we've let down, we come to accept this as our own "new normal". We've progressed to the realization of "Oh crap, whatever! There is nothing I can do about it" and that's when we know we have somehow caught our husband's injury.

I say that all with sarcasm that I hope you can hear because of course, we cannot catch our husband's injury. I'm sure our problem is probably caused by some manifestation of burn-out or just the pure math that one can't possibly be the brains of two people successfully for any length of time. Oh well, such is this life :)

Dangerous driving, not going to happen again

Today was the 2nd day in a row of drill for Dean (the split training drill where he goes and sits in an office building). He was thankfully only there for half a day but because it was the second day he was SO wiped out that the brain wasn't hardly functioning. In the morning, I always try to assess whether he is awake and aware enough to drive before I let him out the door, but now I have a new danger to deal with regarding driving.

Dean passed a driver's test from the VA. I believe he passes because he drove a truck for 25 years and it's part of his long-term memory and that part of your memory that remembers how to ride a bike. I believe he can safely operate a car and he knows the laws/rules of the road, but there is more to think about and today I had that brought to my attention.

He's been choking a lot more often on his food lately so I reminded him this morning (silly me to think he'd remember) not to eat and drive at the same time!!!  He forgot that warning and went through a drive-thru after drill. He said he spilled most of his burger all over himself (which was his biggest concern) but he continued to say "I've been having tunnel vision and problems with my peripheral vision today, every time I tried to look at something other than right in front of me I swerved all over the place". Holy crap!!! I'm feeling really stupid for letting him drive today! I have to remember that he has bad judgement where he thinks he can do things he can't do or he doesn't think something will be a problem that IS a problem. 

What am I going to do? I mean, he does only drive to drill once a month at the most...some months I drive him. Driving to drill is the drive I worry about because it is 47 miles one way (a little over an hour) and that is a LONG time for him to sustain focus on anything. That is the only time during a month that his car gets driven if at all. The rest of his "little drives" are 5 blocks away to the Hardware Store to 6 blocks away to NAPA Auto Parts about once a week or the very periodic 2 mile drive to Safeway maybe 2 or 3 times a month. 

I think I'm just going to have to make it my focus to drive him to drill and just always offer to do it. I think he actually likes when I drive him but he doesn't want to "put me out" because it makes for a very long day for me (I spend 4 1/2 hours in the car between 6 am and 5 pm). This will just have to be one more thing that I "suck it up" and pretend with my best fake smile to really want to drive him! 

I can't wait for him to be out of the Guard!

The morning of drill

Dean had to go to drill this morning as part of his split training (that is where his unit will be doing things this weekend that he can't do yet he still needs to put in his time....so he comes on non-drill days to do other small things they need, like put stickers on folders or separate papers). It still takes a huge toll on him!!!

Last night, go to bed early. This morning: I help him get his uniform on and tie up those boots. I fix him coffee and a nice, warm breakfast (rather than him having his usual cereal), an omelet and the house smells wonderful. He's signing onto ebay to check the status of an auction, then he remembers "Oh ya, I need to eat" so he comes into the kitchen (where I am still cooking) and he gets a bowl and his cereal. I say "I'm cooking you breakfast", he says "Oh! You are??? Great!" and of course I'm thinking 'what do you think I'm doing in here and why the house smells so yummy?' but I just say "Yep". He gives me a hug and says "You're such a good wife"  :)

Then he's eating and trying to find something in his general seated vicinity and that's all it took. He starts choking....and this one was a bad one. I can hear the large chunks of food getting coughed back out of his lungs. Now he gets mad because he can't do what he is trying to do while he eats. As he keeps trying to make himself stop he doesn't stop and he continues to mini-choke on every bite. Now he's super pissed and slams the table and he's all flustered!

He finishes his breakfast and starts to gather things and because he can't think straight anymore he puts things in his own way and trips and almost falls down (walls are great). He asks me to please make him stop because he can't seem to stop with a desperation like he's going to be in trouble. He still has 15 minutes until he has to leave and he doesn't really have anything left to do but while he is wearing that uniform he feels owned and it shows!

I give him the rundown: Do you have your phone? Do you have your GPS? Do you have new batteries in your hearing aids? Then I tell him that I put the pile of things he had gathered to take to drill (he gets bored there and needs reading material, snacks, cigars, etc), which were piled on his passenger seat, into a duffle bag so he could easily carry everything into the building. I walk him out to the car and give him the final prep talk...."If you get flustered, be late and pull over and call me, it's better that you are late than be lost, confused, or dead. They aren't expecting  you at a certain time and a hundred guys will wonder where you are....it's just you"

Now I wait. In an hour he should send me a text saying he got there safely.

Caregiver Retreat

It's been a while since I've written....things have just been all over the place. Some   days we are "in a groove" and it just feels like groundhogs day over and over and what is there to write about on those days?  Then other days it's me crying for silly things or me mad over dumb things....Dean yelling at dumb things or Dean apologizing for our life which breaks my heart!

We had been on a house hunt and found out that we need to put it on hold for a little longer. We are both trying to have faith that God will take care of us and lead us to the home that is meant for us. Dean has trouble with keeping this faith and trusting God. He thinks he's done something wrong to deserve this and that God is punishing him. I have to help keep his spirits up daily.

The other big thing in my life right now is an upcoming Caregiver Retreat in South Carolina put on by Independence Fund (Gary Sinise's organization). I am so beyond excited to go because it sounds like they really made this retreat about pampering us wives!!! At the same time I'm terrified to have something nice! I can't explain that one???  I guess I suffer from a similar "I don't deserve anything good" syndrome that Dean does? Those emotions coupled with such anxiety just preparing for this! I really wish my family was on board. I wish they took a more active part in having compassion for Dean's injuries. Instead I have a paid respite provider coming out to put in 20 hours of work in 3 days time not including nighttime, my step-daughter being paid to come out to pick up the other 2 1/2 days, and my MOMS group saving grace...my babysitter Nicole who will be taking care of Little Dean by taking him to school and feeding him dinner and letting him play at her house so he doesn't exhaust daddy while I'm gone.

All this planning makes a caregiver realize how much she needs a break!!! For a caregiver to go through THIS MUCH just to have a break, it HAS TO be necessary!

I am worried about nighttime. I am the kind of person that has to be prepared for the worst. Let's say daddy puts little Dean to bed and then he snacks on some popcorn which he does every night...but then he chokes. What if he chokes so badly that he needs an ambulance but little Dean is sleeping....then I have to think that the next morning Caroline will be here and will knock at the door and when nobody answers she'll call 911. It's a horrible thought, I admit, but I have to make sure that little Dean is safe! This horrible scenario can really only happen on Thursday night, Sunday night, or Monday night...so there are a couple nights where someone will be here. I have to just realize that I have a cell phone and it's not like I'm going to be out of contact for 5 days. I'm a little upset that upon hearing that I was going on a retreat for 5 days my dad's response was that it's "not a good idea". Rather than asking how he could help, it's just not a good idea??? I think that really feeds my "I don't deserve this" thinking and feeds my doom thinking. Like it something horrible happened it would forever be my fault because I shouldn't have gone. Such a war going on inside me :(

On the flip side, I always tend to worry this much before I do anything happy for myself and then after I'm done it was NOT NEARLY as bad as I thought it would be. So I always get confirmation that it was a good thing for me to have the happy thing.

(I'm listening to a zebra rap about an hexagon....hahaha.)

Well, I'm cried out and need to get things done. I leave in TWO DAYS!!!!

Added another "Topic"

I added a new topic that I will be writing about. I've been thinking a lot about my health lately and am trying some new things and a new way of thinking. I feel compelled to write about it and share :) The link to my other topic is on the right side of the page.

Exchanging Pain for PTSD....GRRRR

I've learned a great to describe Dean's injuries is like a tripod: 1)TBI; 2)Pain; 3)PTSD

Whenever someone has pain, no matter what else they have going on, getting rid of the pain takes top priority! So for the last two years our main priority has been to address his pain level which gets up to a 9 on the pain scale and with hydrocodone can be taken down to a 4. He doesn't like being on 5 hydrocodones a day so we've tried to address it in other ways as well. For the past couple months we've actually been able to get his pain consistently at a lower level and he's only taking 3 hydrocodones per day. Great!

It seems, however, that when as his pain has been greatly reduced he's becoming more of an ass! We put the fire out, so to speak, and now we see the water damage....lol. For two years I've thought that his PTSD wasn't a HUGE deal...yes, it makes his TBI worse, but his PTSD only reared it's head with things like noises and people behind him. Not anymore!

• The other day he was looking at his mail and one of his packages had some damage (not the item inside, just the package) and he flipped out and starts yelling at me.
• He was walking from the living room to the dining room and little Dean crossed his path, he flipped out and screamed at little Dean and made him scared and cry.
• I asked him if he'd come and drink some water since he hadn't had much to drink that day and lack of drinking fluids makes him sick, he said "I'm not drinking any fucking water!"

He has been making the house a place where we are all walking around on eggshells and jumping down our throats for little things (which is unlike him). I don't really want to touch him, or kiss him, or sit by him, or talk to him. I'm becoming resentful and I hate it! Then he wonders why I'm being a "bitch" (that's how my distance is interpretted) and we can't really talk about it because of what I explained in my last post :(

No Communication

We had a HUGE realization today!

The man I married was the man he grew up to be from the boy he had always been....makes sense. He had lived his life for 42 years and knew who he was, how he liked things done, what he could accomplish in what amount of time, what he wanted his future to look like and what it would take to get there. Yada, yada, we all do that. I fell in love with him for all of his idiosyncrasies.

The man that returned home from Afghanistan looked just like my husband but about 90% of what made him who he was is now different, even down to the food he likes to eat. Thankfully the 10% that stayed the same is still there or we'd be 50 First Dates.

Our relationship has been really struggling. Over the two years we've had many downs with little ups and when I find what makes it go up, I just keep doing more of that. But these damn downs I have just struggled with. I thought, "maybe if we get his pain under control, then we'll do better", or "if he could just get consistent sleep, then we'll do better", but with each of these milestones met things have NOT gotten better. If anything we do a little worse when they get met which may seem strange but I think that when pain is the largest thing in your life, that's all you both focus on and the same goes with lack of sleep. So when those things are under control then you can see the big elephant in the room....the relationship is suffering :(

My role for two years has been to explain how what he's experiencing is part of his injuries, to help him to recognize his limitations, to help him process what life means now with his injuries, to support him with his grief of having lost himself, to seek treatments, to implement solutions at home, to be the taxi, his memory, and largely to carry on the legacy of his old self. I thought that since I would do anything for him and give anything to help him that that was me being the wife. But I couldn't figure out why I didn't FEEL like a wife.

• Yes, we lost our intimacy, but surely we can find ways around that.
• Yes, he lost the ability to be my shoulder to cry on and to be my rock, but I can turn to God and friends.
• Yes, he lost his ability to be my partner/helper, but I could just accept a less well kept house or hire someone.

But it's this next loss that explains why I don't feel like a wife. We lost the ability to communicate (which was our biggest strength before). He can talk and I can talk, but that's not communicating. When I explain to him how I'm feeling about the quantity of time we've been spending together lately, what he hears is "You are an evil bastard who likes to hurt me and watch me cry". When I explain to him how I'm feeling about our future house and things we should consider when looking for one, he hears "You get nothing because you are a broken loser". Now, let me tell you, I would NEVER talk down to him, call him names, or even elude to him being a less than honorable man!!! When we talked today about why he interprets my words so horribly, he explained that he hears that I have emotions about something and doesn't know quite how to interpret them and it all gets jumbled inside of him as a feeling that he's worthless, bad, or evil. Knowing him the way I know him, he has struggled with these feelings about himself anyway...even when I'm not in the room. But now I realize that when I am sad, or hurting, or lonely and I talk to him about us in any way, he hears only terrible things directed at him.

This problem is our newest hurdle and I'm so afraid at the thought that there will be nothing to help us! How can anything in our relationship get better if when I talk to him he hears me belittling him? Keeping in mind, that now I have to help him be a husband in the first place. I prompt him to give me "words of affirmation" because that is my Love Language (http://www.5lovelanguages.com/) by asking him, "Am I beautiful?" and "Do you love me?" Most days I spend all alone because he needs to rest or be in a quiet room and when you spend day after day like this it doesn't take much to get to a point where you say "I need to talk to you about some stuff".

In all the other losses I can see ways to work around it, but with this loss I just don't think there is a way around it. I will have to look for someone who can help us find a way to communicate!