Monday, December 17, 2012

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 ( 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!

Monday, December 10, 2012

Burn Out

What is burnout?

Burnout is a state of emotional, mental, and physical exhaustion caused by excessive and prolonged stress. It occurs when you feel overwhelmed and unable to meet constant demands. As the stress continues, you begin to lose the interest or motivation that led you to take on a certain role in the first place.

Burnout reduces your productivity and saps your energy, leaving you feeling increasingly helpless, hopeless, cynical, and resentful. Eventually, you may feel like you have nothing more to give. When you’re burned out, problems seem insurmountable, everything looks bleak, and it’s difficult to muster up the energy to care—let alone do something about your situation.

Sunday, November 25, 2012

Post-Vacation Payment

We returned home from our 8 wonderful days in Galveston, TX on Tuesday night around midnight  after spending 13 1/2 hours driving, flying, airporting, and driving again to get home. Since Wednesday Dean has been like a person on drugs or something. He is weak and can hardly walk upright, he's incoherent and is so fatigued that he's close to breaking down into tears. It's so hard.

Friday, November 16, 2012

Vacation: not what it used to be

Vacation doesn’t mean what it used to mean. Dean and I used to love taking trips together! We would dream of one day when our finances were better and we’d see more of the world. Now vacationing looks like this: Dean stays at the hotel most of the time because he’s so easily wiped out. I go find things to do with the kids. Dean says that if he can feel relaxed then a vacation is not a waste to him, so that’s good because being at the hotel is how he seeks relaxation. For me, vacation is about getting to see the sights of wherever we are. So now, vacations are another time where I’m lonely. I hope that one day the disappointment of our situation will wear off. It makes it sting more when people hear we are going on vacation and they so happily say “Have fun!” or they impart some message of how lucky we are to go on vacation….uh…sure….not. I wouldn’t consider us lucky. We are blessed, yes! But lucky? Not quite.

Monday, October 15, 2012

Communicating With People Who Have Aphasia

I am copying this here because it is how I have to communicate with my husband. I think it would be very useful for people to know and I am thinking of printing it out and handing it to folks at the

Communicating With People Who Have Aphasia
Some Do's & Don'ts

Aphasia is a communication impairment usually acquired as a result of a stroke or other brain injury. It affects both the ability to express oneself through speech, gesture, and writing, and to understand the speech, gesture, adn writing of others. Aphasia thus changes the way in which we communicate with those people most important to us: family, friends, and co-workers.

The impact of aphasia on relationships may be profound, or only slight. No two people with aphasia are alike with respect to severity, former speech and language skills, or personality. But in all cases it is essential for the person to communicate as successfully as possible from the very beginning of the recovery process. Here are some suggestions to help communicate with a person with aphasia:

  1. Make sure you have the person's attention before communication.
  2. During conversation, minimize or eliminate background noise (such as television, radio, other people) as much as possible.
  3. Keep communication simple but adult. Simplify your own sentence structure and reduce your own rate of speech. You don't need to speak louder than normal but do emphasize key words. Don't talk down to the person with aphasia.
  4. Encourage and use other modes of communication (writing, drawing, yes/no responses, choices, gestures, eye contact, facial expressions) in addition to speech.
  5. Give them time to talk and let them have a reasonable amount of time to respond. Avoid speaking for the person with aphasia except when necessary and ask permission before doing so.
  6. Praise all attempts to speak; make speaking a pleasant experience and provide stimulating conversation. Downplay errors and avoid frequent criticism/corrections. Avoid insisting that each word be produced perfectly.
  7. Augment speech with gesture and visual aids whenever possible. Repeat a statement when necessary.
  8. Encourage them to be as independent as possible. Avoid being overprotective.
  9. Whenever possible continue normal activities (such as dinner with family, company, going out). Do not shield people with aphasia from family or friends or ignore them in a group conversation. Rather, try to involve them in family decision-making as much as possible. Keep them informed of events but avoice burdening them with day to day details.
These guidelines are intended to enhance communcation with persons who have aphasia. However, they cannot guarantee that communication will be immediate or on a par with former skills.

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Needing a wheelchair

It seems so strange to me that 1 1/2 years of taking care of Dean could result in me still learning new things about his injuries, but it's happened.

We don't go many places and I always thought that with the diagnosis of PTSD it must be that all the people and bustle was just too much for him. I was almost right. There is actually another piece in there that never occurred to me until one day at the VA.

I took him to the VA for an appointment one Monday after he had been at drill all weekend (drill always wipes him out). He was beat this day and I talked him into letting me push him in a wheelchair around the VA and he complied. We were there for many hours and through much stress. Now normally after a day at the VA when he gets back into the truck afterwards, he is putting off an air of "get me the hell home and don't talk to me" and he is very shut down. But this particular day after having been pushed in the wheelchair at the VA he was jovial and happy in the truck on the way home. I asked him if he thought the wheelchair had anything to do with it and although he didn't like admitting to it, he said the wheelchair helped him.

We tried the wheelchair routine for the next couple of appointments and it worked the same way time after time.

It was a weekend camp retreat where we had to do lots of walking in this most beautiful forest setting (which is Dean's favorite place to be) where I was really wishing he had a wheelchair. I could see how much mental energy the walking was taking from him. He said that every step was like stepping off of a moving cart and that it really just wipes him out.

It was this weekend that I realized that the main reason we avoided leaving our house was not due to the PTSD, it was that walking took so much concentration and mental energy that he didn't have any brain function left to deal with the people, the bustle, the noise, etc. When I remove the need to walk from the equation, he can handle the other stuff 100 times better!

Tuesday, September 25, 2012

Overwhelmed and Lost

I just don't know what's wrong with me the last few days. I feel so alone and like there is no point in talking to anyone about it. I feel like there is so much that I don't know where to start or even what I would say. I will just ramble all the thoughts that enter my mind and see if any of it gets straightened out:

I fear that Dean is having more difficulty that will start to affect his current abilities. There are a lot of abilities that he lost due to his injuries but we try to focus on what he still CAN do. The last couple days he's been having to do some trailer/rig electrical work which would normally not be a problem. Except he's been having problems. Post-injury he had figured out a way to keep track of his work, but with this project he's having difficulty tracking and remembering what he's doing. He is getting confused right in the middle of things. He says he just can't seem to figure things out and he knows he knows how to do this stuff...but right now he just can't seem to do it and doesn't know why. He also says his eyesight is getting worse. He's out there working on the rig with a magnifying glass so he can see. I feel so helpless and so very sad for him. How can anyone understand this? My God if this is an indicator of his future then I think I will need medication to fight sadness :(

Just trying to wake up each day and be happy is becoming a chore. Each day I think today is just another yesterday.

So many things on our plate right now have to be repeated over and over because he forgets. We want to buy or build a house and we both want two different things. He wants what he's always dreamed of while I want what's going to be best for our future. I look at our future of probably Alzheimer's and me doing everything I do now and more until I die. Basically I live a life that requires me having access to help and family while he wants to be far away from people. Practically speaking we are talking he wants 5 to 40 acres and I know that he will need to be in the country away from city noise and hustle/bustle of people but I think 1 to 5 acres will be more manageable. He wants many a small ranch/farm (which he can't take care of but he thinks he can). I can see some chickens and MAYBE a cow? Those are our disagreements. We agree that he needs a machine shop and a greenhouse and garden. It is so frustrating trying to find locations to look that meet the requirements. I just can't wait for our credit to be good enough for a prequalification so we can call an agent and let him/her look for what we want. I'm hoping that he/she can perform some miracle with our needs.

I am not able to maintain all the healthful living that I want. I need someone to help motivate me. I need help.

I have tons of things I still need to get done and have lost all steam. I read my friends' updates on facebook and their lives just go on and on and mine just doesn't. Mine feels like a skipping record or a groundhog's day just playing over and over.

Well I've spilled my thoughts and feelings out and still don't really have any clarity.

Wednesday, September 5, 2012

Optimism with no hope?

I was talking today to a CNA that works at a nursing home. She explained a lot to me about how things work out in the civilian world regarding people with problems like Dean has. She really GOT IT....she works with people with brain problems everyday and has been doing it for years....and she gets to see it from such a different vantage point than I do. I have thought about visiting a nursing home type facility to see if they have things set up there that I can mimic here to keep me better organized.

Anyway, at one point she asked me "How do you do it"? I replied with some kind of answer like "I have no choice....I have to just do it". As we continued talking and I told her of some issues I'm having with Dean and him spending money and trying to teach him how to track his spending and not be so impulsive she said something that never occurred to me. As crazy as this never occurred to me!!! She said "What if this is as good as he's going to get and you can never teach him how"? At that point I had the slamming to a halt realization of something that I had not allowed myself to think about. What if there is nothing more I can do, what if I'm not the inept one, what if I'm not doing something wrong, what if I'm doing all I can do and it just isn't going to improve? I have been hanging onto some idea that if I can just get him in a routine, get him to follow some protocols, or teach him some new habits then this could all be more manageable. But what if he will never get into a routine, never follow protocols, and never learn new habits and we are stuck going around the same overwhelming circle over and over and over again?

The deepest sadness hit me.

What if this is it? I am barely hanging on as it is. I can't keep track of another life that has this much freedom and ability. How do I have the same conversations over and over about our future and the decisions I have to make that he doesn't understand? Sometimes it feels like 50 first dates with a 3 year old (and I do NOT say that to be belittling to my husband!) but in a lot of ways it's like he can't see that something won't work, he can't see that he is unable to do something, he can't see the impossiblity of a situation that contains so many facets.

Can one only maintain optimism when there is hope? I guess I will find out.

Wednesday, August 29, 2012


It's crazy how there are levels of grief I still go through. I am the kind of person that doesn't like to be muddled down with negative emotions, whether it's sadness, fear, anger, etc. I like to be happy and I like to be busy & productive. Sometimes though there is a sadness that I can't shake. On the outside I don't let the sadness show, but on the inside my heart is aching with a sadness that I don't think people understand.

This week I've had two experiences (one a happy experience and one a totally angry, stressful experience) that both left me with the same sadness that reminded me of what Dean can't do and will never be able to do. It reminded me that on other levels, I am alone in having to handle things with the kids. It is pointless to even tell Dean about my sadness because he says "Oh, I plan on being involved with that" and I'm sure he would if he could....but he can't see that his injuries prevent him from doing what he wants to do.

Our youngest son, little Dean, is 4 years old. He LOVES riding his bike and he loves to copy what big kids do. We have a really cool BMX track in our small town and the other day we finally took our son to the track. He loved it!!!! At first almost all of the hills were a struggle for him to get up (he has such little legs that have to pedal so fast), then he learned to master the smaller hills and just this one big hill was too hard for him to get up. He could ride the entire track except for this one big hill and needed a push up the last 2 feet of the big hill to reach the top and not slide backward and crash. We have this helper (my respite provider) that comes over 3 times a week who is in really good shape and he went with us to the BMX track (thankfully!) and ended up helping little Dean up this big hill every time he came to it. There is no way that my husband could do way....ever! There really is not a good chance that even I could do it. Maybe if I become a work out chick with big buff muscles, but that would take me at least a year of committed working out to achieve....and ya, let me fit that into my boring life....hahaha. This day at the track made me realize that due to Dean's injuries there are things that he will never be able to help little Dean do. Daddy can't jog in a field dribbling a soccer ball. Heck, I'm not sure he could even stand still and kick a soccer ball (he doesn't balance on one foot very well). He can throw a ball to a 4 year old, but what about when little Dean's 9 and can throw and catch a ball from quite a distance. That kind of throwing takes having the ability to twist and having strength in your back that Dean just doesn't have because his back is so messed up.

The first time I felt this sadness was a few weeks ago when we went to a family picnic where my cousins who are in their early 30's and are in great shape were throwing a football with the kids. Little Dean ran out there and became one of the kids and had so much fun, but I knew then that that was something daddy would never be able to do with him. I think of our future and little Dean playing sports and not having a dad to practice with him. It makes me very sad.

The other experience this week was when my 16 year old son (from my first marriage) who is often a giant, disrespectful, selfish, brat was causing more crap with our family where he did what he wanted to do and who cares about the rest of the family and the inconvenience it causes. I try to shield my husband from these episodes so that it only inconveniences me. Then I give the lectures, ground him, etc, etc, which never work anyway. But this time my husband was in the car and so was also "inconvenienced". The difference is that for Dean it causes a lot more than an inconvenience. It causes him pain and stress which deteriorates his health. But my son doesn't really care about anyone but himself so.....we were all stuck waiting for him. I realized that my future will consist of Dean HAVING to be shielded from the stress that my son's disrespect and selfishness causes. When Dean is exposed to it, he is stuck between "I'm the step-dad and I have to protect my wife and family from having this punk just crap all over everyone" and "If I unleash the anger I feel, I will scare the shit out of my 4 year old and my wife and for what? Will it actually make the 16 year old act differently in the future?". He has no option that makes him feel like he's doing his job, so he feels like he's failing. My 16 year old knows this and so it works in his favor.

Seeing all the things that I will have to bear by myself because Dean can't help. Then the added weight that not only will I have to bear it myself, but while I'm bearing it I will have to be as happy and calm as I can to shield Dean from feeling like a failure. I just don't know if I can do it.

This line of thinking inevitably leads me to wish I had help/support while also thinking I don't deserve any support because every family has their challenges. I think that if my family was a supportive, helpful one they'd see this need and offer to go throw a ball with my son or to go to the BMX track with us. They'd see that the reason we hardly leave the house is so sad for little Dean, but necessary for daddy. How do I reconcile this? I can't leave my husband home alone all the time so little Dean has a more active life and my husband can't come with us. So it's little Dean that loses out.

I know that all this ties into a stage of grief which is something else most people don't understand. My husband came back alive so why grieve? But in all honesty my husband didn't come back alive, he is not the husband I married. He is a different man with different abilities and a different personality and we have a different future. Coming to terms with the loss of my old husband still happens even 2 years later. I just hope that one day I won't have this sadness??? Is that even a wish that can come true?

Saturday, August 25, 2012

My Birthday

I am the luckiest woman alive that my husband is head over heels in love with me and does everything he can to make me happy and show me I'm his queen!

This year was birthday #2 since he's been home. Last year we were so lost regarding his injuries. This year we have a much better grasp on what he can and can't do and how to head things off before they get worse. That being said, we will need a few more years of practice to get the birthday thing down.

Because I know my husband so well and love him to pieces, I prepare him for my birthday for at least 90 days prior. It usually takes him at least 5 times of bringing up a topic for him to have enough any input on what he thinks about it. That's why I start talking about it at the 90 day mark. "Do we want to go to the beach?" "Does he want to do anything special for me or plan a party?" (I don't really care what we do and have no expectations, but he really likes to make me feel special and so it is a big deal for him) This year my mom and sister are throwing me party and so Dean won't have any big stuff to try and do. He could never actually pull a party off on his own and it is going to be hard enough for him to just be able to attend the party my family is throwing me.

This year at about the 30 day mark we begin talking about gift buying. He wants to spend thousands of dollars and I think less than a hundred is good. I have to be watchful of his activities to make sure he doesn't try to "surprise me" with a $1300 Mother's Ring he heard me talk about one day. We talk about how the logistics of my Thursday birthday and my Saturday party will work. Then about a week prior to my birthday he comes across a beautiful necklace and earrings that he wants to get me for $150 and after seeing his face lit with excitement, I agree and accept it as my gift from him. It is wonderful to see him look at me like I'm the most beautiful thing on the planet (he does tell me that all the time :). The few days leading up to my birthday he has to take it easy which means to mostly sit and nap and not do projects. He must do this so he will have the brain power to actually accompany me on my birthday. We'd decided to go to lunch at Olive Garden with my mom and aunts, then on to a town about an hour away to go to a great store for shopping, then eat dinner at one of our favorite restaurants in that same town. We weren't in any big hurry, but the day would be a long one, and would take its toll on Dean.

It did takes its toll on him and he was wiped out Friday and Saturday. Tonight is my party and he's been napping all day to prepare to attend. He's going to drive himself there so he can leave early and I won't have to worry about him all night.

All of this preparation and worry and stress for a birthday :( Next year we'll have to try to maybe have a special afternoon each week for 4 weeks?) Who knows.

Friday, July 6, 2012

Tips for our respite provider

David is my respite provider, a.k.a. Dean's helper. He provides Dean an extra pair of hands and helps Dean get some things done in half the time he could get things done on his own which is now a third of the time slower than before his's that for a math

I've talked to other wounded warrior wives who receive respite or are looking into it and have lots of questions about how to find the right fit. Here are some things I've learned by trial and error with David, our respite provider.

I was talking to David's boss about how things were going and because I know what I'm thinking only after I talk about it, I learned a lot of things by having this conversation with him. There were a few areas that I couldn't put my finger on as to how they needed improvement.

The first couple of days David was here, during times where neither Dean or I were talking, David would fill the space with questions or stories. I realized that to be Dean's caregiver you have to be comfortable with silence. Dean can't take constant noise and silence provides him with needed rest. More than just silence, I realized, a caregiver needs to somehow direct their energy in a non-outward direction. In other words, even when someone is silent, if their energy is outwardly focused you can "feel" that they're antsy or like they need you to entertain them. I finally realized that David needed to bring a book or laptop or a project of his own so that when we were in silence he could focus his energy on his own thing. WOW did that help! David's boss conveyed that to him and on the fourth day he brought something to read. I actually got things done that day and Dean did well. I felt like David could take care of himself over there.

Something else I discovered is that it would be helpful if David was watchful of when Dean left the room to get away. If David noticed that, he could ask me "Is there anything I could have done differently"? and that would allow me to give constructive criticism if I had any. Sometimes I would say "no, he just had a hard night last night" or I could say "yes, we have to make sure he has it quiet when he's reading something" (as an example). But if David were to ask that question, I could just tell him honestly and he could learn how to help Dean better.

The last thing I figured out was to tell David that Dean can only handle 2 inputs at one time and that that is his limit! A third input would overload his circuit and he'd not be able to think or talk and may have to leave the room. I explained to David that if little Dean is making noise in the living room (input 1) and David was asking Dean a question (input 2) and then a helicopter was flying by outside, that David should pause his talking until the helicopter was gone. This helped David greatly!

I am definitely taking note of all the little things that help Dean so that whenever we have different respite providers in the future we will have a better grasp of the tips that are helpful for the caregiver.

Isn't he better now?

Since Dean went to Texas for his TBI treatment lots of folks assume that "he's better". I've had to think of how to explain the reality of the situation to people.

Although they helped him at a soul level by giving him hope and happiness again, they could not truly help him in a way that would be evident at home. It's kind of like how playing a video game of tennis is not the same as playing tennis. The video game removes all the hard parts. Project Victory removed all the day to day hard stuff. There was no noise from a preschooler or a wife, no noise from the neighborhood, no unexpected actions going on around him. Everything was like a life simulation. He had therapists whose job it was to help him with one thing each hour for 7 hours a day. They could make sure that he only had to focus on the one thing without any other input. And even without any stress, he still got migraines by the end of the week because the cumulative effect of working each day caught up to him.

Another thing they could not do is build a closeness that he has with me. He could learn to follow their routines and guidelines and he learned how to live within their environment to their expectations. But he was adapting to try to get out of it what he could. Again, it's not like real life. In real life you have to decide the goal to your own day, you have to make all the decisions about everything yourself, i.e. what to eat, what to wear, when to wake up, what to work on, how to accomplish the goal you set, etc. This all doesn't seem difficult, right? Add to those relatively simple sounding tasks that people usually have more than one goal to accomplish in a day.

  • What to wear -- do I wear work clothes or nice clothes, what's on the schedule for the day, what will the weather be like, do I wear shorts or jeans, are my shorts clean, do I have t-shirts.

  • What to eat -- when did I eat last, do I remember that I want to eat healthy food, what is healthy, what is the right amount, what is easy enough that we have all the ingredients to that I can do without much thought.

  • When to wake up -- how do I feel, do I hurt, can I be pleasant if I go downstairs, I think I'm hungry, should I go down just to eat something and then come back up to rest, what did I do yesterday, was yesterday a super stressful day so that today I should take it easy, was there something I needed to get done today.

  • What to work on -- what projects am I in the middle of, oh yeah I have folders, oh yeah I needed to get something, oh yeah I need Karen's help with that, oh yeah I need to fix this first, do I have what I need to fix it, where are my folders, do I have anywhere to go today, is Karen going anywhere today.

Those are all monumentally difficult questions to figure out for Dean and those are just 4 questions he has to start each day with. Project Victory answered all those for him. They set the schedule and controlled how many answers there could be to every question to make it simple. If he didn't ask one of those questions someone was there to remind him.

With all this, I love when people say "didn't that treatment in Texas help him"? Ummmm.....ya, sure, and no.

Now what about BIG issues like losing weight, buying a house, or planning a vacation? Those are so out of Dean's league that he doesn't even know they are things TO think about. I juggle every decision and only give him small nibbles of it as he can handle thinking about it. It makes everything take a LOT longer than it does for most people.

Although you can read my blog about how wonderful Project Victory was for Dean and what a great impact it had on him, reading this blog puts into perspective all that a treatment facility can't do and that only a caregiving wife can do :)

Saturday, June 30, 2012

4th of July

Earlier this week our local paper wrote an article about Dean and how some veterans cannot handle the 4th of July fireworks. If they only happened on 4th of July he could prepare for that, he'd know they are coming, but since neighbors usually light them off for a week beforehand and a few days afterwards he gets barraged by fear for about 10 days. I don't know how this year will be, but last year was heartbreaking to watch!

I used an analogy to describe to a friend what it was like for Dean last year. I don't assume it's like this for every veteran.

  • If you were stripped from your clothing (because then you'd be vulnerable) and then sent through a house you'd never been in blindfolded (because then you'd be surprised) and were hit with 2x4's by random people in all directions (because every explosion is like being hit). You didn't know how many times you'd be hit and between each blow you tried your hardest to just gain some composure but they keep coming and you only wish it would stop.
We will see how this year goes. He has learned a few skills and maybe they will be enough to help him not be debilitated. 

For some veterans, nation’s birthday fireworks bring back war traumas

Submitted photo
Dean Harris of Molalla is pictured here while serving in Afghanistan with the Oregon National Guard’s 162nd Engineer Company in 2010. Harris was hit by IEDs three times during his tour of duty and suffered multiple injuries. Each 4th of July season, the sounds of exploding fireworks flash him back to the war.
Fireworks signify celebration and freedom for many Americans, but for some veterans the sounds of explosions trigger trauma, forcing them to relive scenes from war.

Karen Harris, the wife of a Molalla veteran injured in Afghanistan while serving with the Oregon National Guard, is making a plea to community members to keep their fireworks celebrations to July 4 when celebrating America’s birthday this year.

She plans to distribute fliers to her neighbors and hopes others in the community will also keep veterans in mind.

“I think it reminds him of firefights and explosions and it makes him feel in danger,” she said of her husband, Dean Harris. “For a week he’s at war in our house. It’s horrible. Every day that it keeps going it’s just more and more debilitating.”

She said her husband would never ask for the favor himself, but she hates to see him suffer again. If the fireworks were used on just one day, she said, he’d be better able to mentally prepare, rather than being surprised by random explosions for more than a week’s time, like last year.

“It makes him not be able to think or talk,” she said. “I’m so dreading it.”

Dean Harris, 45, was hit by IEDs three times in the span of two days, causing brain injuries, his wife said. He now experiences post traumatic stress disorder as well.

A truck driver for 20 years, he joined the Oregon National Guard at age 41, serving with the 162nd Engineer Company. He was deployed in November of 2009 and hit by IEDs in March and April of 2010. He also suffered a broken back and broken elbow before finally returning home in August of 2010.

“It really changed our whole future,” Karen said. “And you know what? He’d do it again. And he wished he didn’t have to leave early.”

Dean said he doesn’t regret joining the National Guard and is quick to point out that some have sacrificed more than he did.

"I love my country and in my heart I knew it was the right thing to do,” he said in an email. “It just happened to be the hard thing to do.”

Dean said he loves the 4th of July and he’ll prepare himself to deal with the fireworks that day, but the loud noises before the holiday are “not really a great thing.”

"I react instinctively,” he said. “I don't have time to think about it. It puts my body into fight mode and I get ready for an ambush.”

Ryan McNabb, readjustment counseling specialist at the Portland Vet Center, said there are many veterans troubled by fireworks.

“The Fourth of July is one of our favorite holidays, but at the same time, it’s a holiday that we don’t like to participate in because of the fireworks,” McNabb said.

Even when prepared for fireworks, he said the sounds can easily overwhelm the senses.

“It’s something that’s learned that really can’t be unlearned,” McNabb said. “When you’re 2 years old, you touch a fire, you understand that it’s hot and you don’t touch it again. Same with our startle response. You hear a loud noise and first instinct is to protect yourself. Your startled response is very tense at those times.”

1000 fires

Since I am now Dean's recognized caregiver through the VA's caregiver program, I was told I could have respite care. That means I can have a person come to my house and help Dean so that I can have some designated time to get other things done and not be interrupted by Dean's needs.

So our respite provider started last week, his name is David. The first day he was here was a great first day because although Dean looks and mostly talks like he has nothing wrong with him, David got to see what our life is like and why I seem to be in chaos all the time and need a respite helper. He was so observant that he gave me a great analogy for it. He said what keeps me from getting my own things done is all the fires I'm putting out. He is SO right! That is what I do all day, every day! It's all the little things that you can't put on a schedule that happen when a brain injured husband has all the freedom in the world to fix things, see things that need fixed, want things, tries to research things, tries to buy things, etc.

  • Here's a good example: Dean has many projects and we've created some folders to help him remember what he's working on at the moment with each of his projects. So on this day he's in the middle of gardening (and I was getting my own things done) when he gets a phone call from a guy who is selling a piece of reloading equipment. Dean had left a message with him on some other day. The guys says if Dean can meet him in an hour and a half he'd sell it to Dean. So now Dean needs to know what's on our agenda this evening and can we drive to meet him. I ask some questions and figure out that the guy is an hour away, we have David here on his first day, and we'd have to leave in 30 minutes and I am in the middle of making dinner. I'm trying to now make a deer in the headlights decision while Dean is on the phone with this guy. I ask him if he could call him back to let him know so we can talk about it. Now I have to ask some more questions because Dean gets in these "buying sprees" and gets kind of out of control. {This week already he spent his entire account on a rifle scope. He'd been saving this money for months to use on his car for some upgrades and now he's convinced me that this is more important. I said, "it's your money". Also this week he's spent $87 at BiMart for a bunch of things we don't need, $37 on some other reloading equipment on ebay, and now he wants to spend $30 on this equipment today. I have to explain to him that this money is coming from our house account and he can't keep doing this.} He needs to have money in his account before he can keep spending. I feel so bad telling him that he shouldn't be buying things (like a mom has to explain to her child) because he gets so down about it. So I ask him to explain the entire topic of "reloading" to me and how this piece of equipment fits into it all. He has compelling reasons for these actions....this is something that costs $120 brand new and this guy is selling his for $30. But that is always the trap I get in with him. He finds an infinite number of things that are a great deal but he doesn't have an infinite amount of money to buy it all. That is the part he can't reason. He can't take all the facts into account and make a good decision. So I have to control the money and spending and help him make decisions about it. And sometimes he makes the wrong one and will have to accept the consequences of it...but this is very hard as the wife to grown man husband :(  All of this is happening in front of David and while I'm making dinner with little Dean dancing and singing louder and louder 6 feet away. So I've stepped away from the kitchen and am now sitting to hear his explanation and to lay things out for him to understand where I stand on the issue. Thankfully, the guy called back a few minutes later and said the first guy that wanted it is on his way there and so he felt obligated to sell to the first guy. But you can see how this "fire" was something I had to tend with at that very moment.
I have these fires all throughout the day. Dean needs help moving something in the garage. Dean's garden needs something and we have to go to the store (and we have to discuss "need" vs. "want" and whether there are alternatives so he doesn't have to BUY something else). Dean can't get his computer to do something. Dean can't remember where he put his wrench. Dean wants to have me remind him of something so he doesn't forget and I remind him to "write it in his folder" (this is a new system and so we have to be diligent to have it become a habit). Dean is about to fall over because he's overdoing it outside. Dean needs to eat something and I can tell by the look on his face (he doesn't feel hunger). The list of things goes on and on and I'm constantly "on call" to his needs. If he doesn't do something the moment he thinks about it, he'll forget, and they will come back another day. I feel like I spiral around bumping into objects in a pinball machine!

My hope is to have David be the fire putter outer two days a have David help Dean to write his ideas/wants/needs/to do's in his have David help Dean open a folder and work on one project at a time. I hope David can do this two days a week so I can know that on those days I can get my work done.

We will see?  

Thursday, June 14, 2012

Ebay and line of credit....ooops.

In April Dean found some tool on ebay that he wanted. We have both used my ebay account for 10 years as it's easier to keep track of all purchaes is we just use the one account. I happened to already have an established account when we met, so we used mine. Also I have a paypal account that I have gone through the process of linking it to our bank account and debit cards, etc.

So Dean found this item he wanted and must have forgotten all of the above info or something? When he clicked on the item to purchase it he was asked for his login info or to create an account if you don't have one. He thought to himself, "I don't have one" and so created one. Then he clicked to purchase it and was prompted to either use paypal and to use a service called "Bill Me Later" (which is a line of credit). It said something about helping improve your credit score and he thought "I need to improve my credit score" and so he signed up for that. By giving them his SS number and his birthdate they gave him an account and charged this purchase to his account. At this point they must have prompted him with confusing stuff because he thought that he didn't have an account and then he thought he paid for the item with his debit card.

I remember him telling me "I tried to sign up for this Bill Me Later thing but I don't think it worked". He told me he paid for the thing with his debit card and biggie.

Now, 3 months later, he's worried because they keep sending him stuff in his email about his delinquent account. I call and check on it and he DID in fact sign up for the account back in April, he DID charge his purchase to it, and they have been supposedly billing him and tacking on interest and late fees. Now his $37 purchase is up to $96! I talked to the guy, explained my husband's TBI and that he didn't really understand what he was doing while I tried to follow the really spotty paper trail between ebay and Bill Me Later. Anyway, I got it all figured out, they customer service guy cancelled all the extra charges and I paid him the $37 and then I closed the Bill Me Later account and his separate ebay account. He feels horrible that he messed things up and caused me extra work and of course, I'm not mad or's just one more crazy happening in the TBI more thing I gotta keep track of.

Sunday, June 10, 2012

Unpredictable days

Our everyday is so unpredictable which is the only thing I can count on. When will he get up today? Will he have a headache? Will he be extra dizzy? Will he be able to talk well and get out his thoughts well? Will he be extra aggitated? OR Will he be pretty productive? Will he want to be "with us" today? Will he be somewhat positive? All those questions leave me at 9:30 am wondering what will my day look like? I remember those days when the weather dictated what the day would look

Sometimes I think "why does my day have to revolve around how Dean will be"? Cant I just plan something and then do it and let Dean do whatever he's going to do? I can't do it. I don't know if it's just the kind of person I am and that the controller in me just needs to collect the proper data about his health? Or if he is truly in danger on his bad days? But I guess I also don't want to test it and find out the hard way. I am always "collecting data" about his health. The doctors always want to know and so I watch and keep a tally of which symptoms go together. Is he more dizzy on headache days? Are his headaches predictable? Is his slowed cognition predictable? I like to be the expert on my husband and he certainly cannot be the expert on himself, so it is my job. That is something I imagine is hard for the people who don't live with TBI in their life to understand.
  1. He cannot self-regulate (I think that's what you would call it). He does not know how to change his activities due to his health. When he gets a migraine, he's laid up in bed...but it's the migraine that's forcing him not him choosing. Dean is pretty one track minded. Every day that he doesn't have a migraine he is thinking one thing - what can I get done today? He is an unstoppable locomotive that wants to be productive and is a genius at coming up with more and more things to do. I've never seen anything like it. I think that's what really tires me! I can't hardly add to my own list because I've got to help him with his list which is constantly expanding! He takes up new projects that require 100 steps each just to implement and he'll have 3 or 4 of them going at the same time. Now to me it just feels like we are spinning our gears endlessly and aimlessly, but since sometimes I actually see progress, I can't definitively say we are just spinning. It may just be how he works. But a non-brain-injured person who had a leg injury or something might think, "oh with my leg, I can't do XYZ, so I'll have to find things I can do"....but not him. He has back problems and mobility issues but his brain injury doesn't take his inabilities into account. I will point out the logistics of something to ask how he is going to do it, and then he will realize "oh, I will probably need help with that part". Yep, that's what I was thinking
  2. He can't self-monitor. He doesn't remember if today was the day he had a migraine. He has no idea that the reason he can't get his words out today is because he was on a bus for 6 hours yesterday with his unit going to a funeral. He doesn't have the forethought to decide not to go to the picnic this afternoon because he has an appointment tomorrow that he can't be wiped out for. I am the holder of all the future plans and appointments and the knower of what activities cause what symptoms.
On the days that he's doing alright, I will take little Dean somewhere and be gone for a few hours. When I return home he has no recollection of what all he did. He can tell me some things...but I don't know how his mind decides what to remember? But the bigger detriment of this is that I won't know how much energy he really expended that day and won't be able to have him go to bed early or to take it easy or use that information to plan ahead. There, though, is another thing that people who don't live with TBI in their life don't much energy could he actually expend by plinking around his garage for a few hours? Every noise he heard was a stress that affected his ability to think or stay focused. Every movement that caused pain was a stress that affected his ability to think or stay focused. So if that day a kid was racing his remote controlled car up and down the street, Dean is more exhausted. If there was some police activity going on around the block, Dean is more exhausted. If some neighbors were weed wacking and mowing their lawn for 2 hours, Dean is more exhausted. Me being gone for a few hours means I missed a few hours of what he experienced and what will affect his evening and possibly the next day.

So I guess I've answered my originial question. It is just too chaotic and confusing for me not to know what Dean can handle tonight or tomorrow and more often than not the few hours of activity I would be going to do isn't worth the not knowing.

Thursday, May 24, 2012

Free Home

We have applied for a "mortgage free home" through Operation Homefront's Homes on the Homefront program. And we are finalists in the selection process. This is both exciting and nerve-wracking! I'm a little afraid to be excited. Getting this home would be a HUGE positive in our life! It's a bigger home, with a bigger yard, in a smaller town with a slower pace of life. There are so many perks that it would be beneficial to Dean's health!

They have gathered information on us from many sources to piece together what kind of people we are, how well we take care of our home, how well we get along with people, how well financially we could take care of a place, etc., etc. And now we have to just wait.

Sunday, April 29, 2012

Walking through landmines

We recently took a little family trip to Sunriver, OR. The drive was a little more than 3 hours with a man who is hurt by every bump in the road. He gets generally aggravated by being in the car. I can't be 100% sure whether its because he's not in his "comfort zone" at home, or the pain he experiences in the car is just too much, or that he's trapped in a small space with noises and movement that is too fast to keep track of, or a combination of all of them? I can't be sure...but those are all general complaints that I've compiled from him over the last year and a half. It's especially difficult to have little Dean in the car because he makes sudden and random and sometimes constant noises. It all puts Dean over the edge.

During our 3+ hour drive, we tried to have conversations. We put on a movie in the backseat for little Dean to hopefully keep him in a sub-catatonic stare so us adults could talk. We had mostly good conversation which is very decieving as you are trolling through it because you get relaxed and a little happy and then all of a sudden you step the wrong way and BAM! I don't know where the wrong step happened. The conversation didn't shift onto a new subject, it didn't recently include a new topic, just all of a sudden it went from pleasant/happy to he's pissed! Of course that sends me into backpeddaling mode where I try to clear up whatever was misunderstood. I try to help him understand what was being said because I'm sure if he understood he would surely not be angry. It doesn't matter because nothing can work now. I am shrunk down into a puddle of hurt and fear. I don't fear for my safety, I don't really know what I am scared of, but it shuts me down and I usually cry. Then because I'm kind of a crazy extremist, I start down the path of "this whole trip is stupid" and "what an idiot I am for believing I can have a HAPPY conversation with him". I know that thinking is not helpful but it's what happens to me automatically. (It is a goal of mine to become in control of those thoughts one day).

Now that I'm crying and have my energy all sucked in and he can feel that I'm different, he feels horrible! He never meant to make me cry or upset me in any way, he doesn't even know why he got all pissed. I know his apology is sincere, I know that he couldn't help his reaction because he doesn't even see it coming, I know that he feels horrible but it's an odd predicament to be put in. My feelings are hurt, I am sad, I am defeated and shut down but it was all an accident. This is not the first time it has happened. The first time it was easy to forgive, forget, and move biggie. But they happen routinely and out of the blue. It is so difficult to shift from hurt feelings and sadness to forgiveness in 5 minutes. It is hard to just move on as if nothing happened but it is so hard on him to think he hurt me and wish he could take it all back.

I've come to realize and try to just accept as part of our "new normal" that conversations with him are like walking through a landmine. I try to realize that I still have it so much easier than lots of other wives whose husband do a lot more than "flip out" momentarily. I also am so thankful that God gave me the ability to forget the bad things in my life and move on pretty quickly. I mean it takes me about 30 to 60 minutes to completely forget it happens, though I wish I could forget in 5 minutes. It's good to just see the blessings and be thankful and not wish for more. It is what it is.

Sunday, April 22, 2012

What you cannot see

Dean and I used to be inseperable! We talked about everything, we talked or texted probably 20 times a day while he was at work. We were best friends! We talked like friends talk..."i just saw this super rare car" he'd share, "i saw the coolest kitchen in a magazine that looks like something we could do" I'd say, "i heard a song that reminded me of you" he'd say, "ooooh i know what i'm making you for dinner tonight" I'd say. Just the little things...the little everyday, throughout the day things we'd share because we were best friends. I miss that.

I've had to learn, and still need a lot of practice to perfect it, how to NOT share those little things with him. I have to hold inside of myself all my thoughts and feelings which for 8 years I shared with him because now he can't handle it. Now when I tell him a little tidbit, the effort it takes him to hear my words, attribute their meaning, and then give a response is so great that he can't handle hearing them. It used to be that when I'd share a tidbit it was some random piece of information that didn't fit into anywhere and he loved that about me. I have not changed, I am still random and love to share, but he is not the same man. When I used to share I could feel the bond it created with him and now most days feels like there is no bond at all. I have to learn how to be connected to a man who can't connect the way we used to. I still don't know how to do that one. Those days when I feel his love and I can love him back are so wonderful....but they are rare now. I used to move through my day feeling his love every minute. I swear I could feel him thinking about me when he was 100 miles away from me! Now I have to ask him just to hear the words because he forgets to show me or tell me. I don't mind asking, but it is different....and sad.

Since I am so far from perfect I mess up all the time and a random piece of information or excitement will jump out of my mouth. I instantly want to pull it all back inside of me because I can see the confusion on his face because it's like he walked into a surprise party when it wasn't his birthday and he thinks he is forgetting something. I can see the panic that he feels because he can't pause the current thought he's having in his mind to hear my words and this makes him feel awful.  He worries about making me happy all the time and fears that his misfunctioning brain will cause me to not love him anymore. Of course he is so wrong, but that is the man he's always that worries about being a good husband to me. I reassure him all the time that he's still the same intelligent man he was when I met is just trapped inside there underneath a bunch of uncomfortable stuff. So when I mess up and a thought or feeling leaps out of me, I endure the pain of having hurt him pretty immediately. At that point all I can do is apologize and tell him wasn't important.

It gets lonely for me not have my old husband. It is difficult to try to redefine us. I try to be thankful that for him this process is not difficult at all. He knows he loves me, he is reassured of my love all throughout the day, and he just can't do things the same now. He does get frustrated...but doesn't really see the full effect it has on us compared to who we used to be. This is more of what you cannot see.

Monday, April 16, 2012

Med Board Process

We have very mixed feelings about the Med-board process that is currently ongoing. Maybe it's that I am so connected to him that I feel what he feels? The Army is in a process by where they determine whether he is fit to stay in the Army (which they will find that he's not...we know this is ineivatable). So there is this pending sad day that is inching closer and closer while at the same time we can't wait for it.

It is sad because putting on that uniform every month makes him feel like he did something important and is a part of something that is so awesome and badass! It puts a smile on his soul to be a part of it.

We can't wait for that day to come because then he won't have these weekends each month and the 2 weeks a year to have so much stress of "performing" that it exhausts him and puts him in bed with a migraine. We plug along with life and then when drill comes it's this mad rush to raise our standards to come close to the Army's and by the end of the weekend he's crashed and burned and laid up in bed for a couple days.

Another stressful part of the Med-board process is that it has been explained to me that by the end of it all, the Army will give him a "rating" that will go hand in hand with the VA rating. Their findings will be final. So this is a fight where they want to see his best days and make light of his injuries while still showing he is unfit for duty....that way they won't have to pay him when they kick him out....and we have to make sure they see his worst days and show how debilitating his injuries are to his daily life and our future so that when they kick him out, they will compensate him for his actual service and sacrifice!

Today he is supposed to be at his make-up AT (that's what they call the 2 week drill that occurs once a year). They had him do a 2 week make-up because due to his injuries he is unable to go out in the field and perform the activities the other soldiers will be doing for AT. So his make-up time is spent showing up at the Armory in Salem, in uniform, at 8 am and then sitting there and doing what little activity he can do until 4 pm. I say he is supposed to be there because he is actually laying in bed with another migraine. This is his 3rd one in 6 days. He attended make-up drill all last week and then Saturday and Sunday he had his regular monthly drill so that's a lot of stress for him to perform day after day.

They will never understand how hard it is for him to just get up and be there by 8 am (he could not do it without my extensive help) and then when I pick him up at 4 he is exhausted and tired as if he took the bar exam all day after getting no sleep. If he had lost a limb, they would all see his sacrifice and would imagine how hard life will be....but because they can't see his brain injury and how its lasting effects take a toll on him they can easily dismiss him as lazy or faking it. Most of his fellow soldiers have been blown up multiple times and they are "just fine" (or so they think they are) what's wrong with Harris? I just hate that uninformed ignorant thinking.

Saturday, March 31, 2012

Open with his injuries

I talked to Dean today about playing around with the idea of being open with his not hide them anymore. He has such pride and was raised by a generation that taught him that to show weakness or vulnerability means you are prey and will be attacked. I think, though, there are only two options: 1) People will think he is weak and unable; or 2) People will think he's a liar and faking it. Either he shows people or he hides it. He does see the wisdom in being truthful and letting OTHERS' behavior be unjust if it's going to be.

Only his children and I know the truth about what he faces day to day. Trying to describe a brain injury to folks that have no idea is hard....but I'm going to give it a shot.

  • He cannot walk and listen/talk at the same time. He spends all of his brain energy on making sure he doesn't fall down...with his dizziness and his weakness in his leg(s) and his back being so sensitive to any misstep, he has to concentrate on each step. When he listens to someone, it takes lots of concentration to decipher their words and place meaning on them, trying to make sure he gets the correct meaning they intend. Since usually people talk too fast, he misses half of it and gets very overwhelmed. If he is being spoken slowly and patiently to, he can understand after great concentration and then he has to formulate a response. Finding the right words is sometimes like pushing a rope for him and he gets very frustrated.

  • He cannot remember things like what motivates him in life. We have endless conversations about his goals and how to achieve them, he gets excited at the prospect of success, and then 15 minutes later he forgets he has goals and feels like his life is spinning out of control. He can't remember if he ate, what he ate, that he poured a drink. He can't remember from the time he gets up from the couch and walks into the kitchen (5 feet away) that he went in there to take medicine. He forgets appointments and plans. When he's driving, he forgets how to get home or where he is. Holding onto memories are like trying to catch wind for him and he gets very frustrated....but thankfully with memory loss, he forgets that he can't do it well and he can get a little peace.

  • The things he does remember, he has no "depth perception" to. He can't tell if a memory happened 5 years ago, 5 months ago, or 5 minutes ago. He thinks he knows something but can't rely on when it happened. He can't even rely on whether it was real or whether he was just thinking about it or dreamed about it. All of his memory problems make it very difficult for him to answer questions which is why I accompany him to every important meeting or appointment. He really cannot answer questions or handle the pressure that people place on him to respond.

  • He needs more sleep than the average person, between 10 and 12 hours. He has still not mastered waking up at a predictable time. This makes it very difficult to make any plans with people. At night he takes medicine that could knock out a horse and so past 6:30 he's going downhill fast. By 10 pm he tries to be in bed....but the next morning....all bets are off for predicting when he will be awake enough to get up. Each week there are two or three days where he can't get out of bed due to a migraine. Sometimes taking his Imitrex helps and sometimes it doesn't. Again, that makes it hard to plan things.

  • He has balance problems and hearing problems. He often doesn't hear what someone says and/or cannot tell if their words are directed toward him. He often needs to hold on to things to walk.

  • He can't read body language. When people make the gestures like they need to get going, he will not recognize it at all. When someone incinuates things, he will not get it. It has been a challenge for me to learn to be direct all the time.

  • He is able to perform at about 1/3 capacity of everyone else. What would take someone 20 minutes to do, takes him an hour. When he's been out in the garage for 6 hours, he completed a 2 hour project. And time slips away from him too. He doesn't really know how long he's been doing anything without being reminded which he then forgets.

  • Stimuli, especially noises, are too much for him if they happen more than one at a time. It takes his brain too much energy to decipher the importance of each of them and he cannot seperate his attention between them.

There are many more things....but these are on the tip of my mind at the moment. About some of these things people will think or say "oh ya, my husband's like that too" or "all men are like that". Dean was not like any of these things before Afghanistan! That's all the matters with a brain they were before vs. how they are now.

Taking care of him requires my full attention to be on his actions, plans, and needs, etc. It is a full-time job!

Things you can do when you know someone has a brain injury: talk slowly (not in a higher pitch like he is a baby, just s-l-o-w-e-r), feel the energy you bring to the conversation and calm it down 10 pegs (about as slow as you feel when you first wake up in the morning), and be patient.

Wednesday, March 28, 2012

A bad day for Dean

Dean is having a bad day today. He is uncoordinated and keeps dropping things and can't walk a straight line so is holding on to things. He says that when I talk it sounds like jibberish non-words and he has no idea what I'm saying. I feel so bad for him on days like these.

These days are when I feel like I don't know what to do about all the family and friends who don't have a clue what our life is like. I think of the uncle who doesn't know why Dean doesn't ever come around but "seems fine" when he talks to him on facebook....or the uncle that asked Dean why he is limping. I don't know what to do. Do I send out some memo letting everyone know how hard things are for Dean? Or do I let it go and just counsel Dean on ignoring their words? He feels pressure to look normal when he's around people while not understanding their fast firing words and not knowing how to answer or respond to their barrage of questions and comments. He feels like he's the plane crash and doesn't want people gauking at him so let's leave it alone? But at the same time he wants some patience and understanding. So what should I do?

Sunday, January 8, 2012

Much better place now!

I think a big turning point for Dean (and us) was his going to Project Victory in Galveston, Texas. They are a residential rehabilitation program that wrap services around polytrauma soldiers/veterans (those with many injuries but including a brain injury). He was there for 9 weeks and was able to see therapists every day. He saw Occupational Therapists, Physical Therapists, Recreation Therapists, attended group and personal counseling, and had nursing care too. Being there was such a good experience that he came home a different guy again!

The OT there taught him a routine that he followed each day. It showed him that he CAN be functional day to day by learning some habits because habits form in a different part of the brain than just trying to remember.

The PT he got there was amazing! One practitioner happened to be experienced in sacro-illiac dysfunction and gave him daily adjustments and got his back in the right alignment. This took weeks to do because his muscles were used to holding his back in its wrong position. Over weeks he learned to walk without relying on his walker and went from a pain level of 8 to 10 down to a 0 to 2!!! Amazing! This gave him such hope. He had been living on 5 Hydrocodone 10's a day for 9 months and still in such pain and without having much mobility...he thought that was the rest of his life. After being correctly adjusted, he learned that he doesn't have to live with the walker, pain, and immobility forever....but with the correct treatment he could have a better life!

The RT he got there really helped him learn techniques to use when going out in public. It taught him that he has the power to speak up and tell people what he needs. He also learned to play some games that are good for his thinking and now we play them together. This is actually a bigger deal that it may sound like. In the 10 years we've been together, I love to play games and he never like playing them. Since his TBI-PTSD it is hard for us to have intimacy/emotional closeness. He is in a closed, protective shell with his feelings all the time and so getting him to open that shell and let me in requires a lot of planning and controlling the environment (which is hardly ever possible with our son around). Now that he plays games with me, it is like we found a way to bypass his shell. While we are playing games it keeps his mind focused on the game and emotions are more open and spontaneous. He has an actual "happiness" about him while we play and it is one little way that I can be close to him again. That means a LOT!

The group therapy helped a little in that he knows he's not alone. But I don't think he was as receptive to opening up in a group setting at the time (or even now for that matter), so I don't think he got as much out of it as he could have.

The personal therapy was another AMAZING experience for him. The therapist he saw there had a special sense of what Dean needed. While he was there he was able to shed a lot of childhood issues that he'd been carrying around all his life. These childhood issues had manifested as his opinion of himself. Before his deployment he managed his life with those opinions but after coming home with his injuries and life's new forecast, those opinions couldn't be there peacefully anymore. Mixing his new brain and emotions with his childhood scars made for his own internal IED. The therapist at Project Victory helped him completely remove the childhood scars! I know God had a hand in it too as He has had His hand in everything in our lives! Now Dean can smile at funny things, he has an ability to relax, he doesn't hold himself in constant judgement and ridicule which just makes for a happier person.

The nurses there helped him learn a new way to track his own medicine tracking. That was helpful in the fact that it gave him something he can be in charge of. Any task that he can be in charge of makes him feel more like a man than a dependent person.

All in all Project Victory did what they said they could do. They helped him be more independent. For 9 weeks he learned that he could make it through the day without me. That is a big deal for an adult. He is the kind of man that likes to carry those around him on his shoulders. He always prided himself as the provider and protector, the doer and fixer, the worker and the rock who was there for me and the kids. After his injuries all of these things were challenged. Project Victory helped him see that although he could not hold a paid position at a job outside the home....he was NOT useless. Now he can see that he still provides for his family by having fought for our country and now is not ashamed to have to collect VA disability pay and Social Security Disability. He can see that he can still protect us. He can still do things and fix things but those things would take a little more time, planning, and focus. He was still a worker in the sense that he had a job to do in our family to be a father and a husband. He learned that being a rock will just have to be defined differently, that although he doesn't have the brain function or emotional strength to take on my hard day, he could still put his arms around me and love me and that would give me strength. As a couple we have had to redefine a lot and reorganize how our family functions. We are still learning but have come such a LONG way!

Saturday, January 7, 2012

Lots of emotional hills to climb

During our discovery process Dean has come a LONG way emotionally. Initially he was ashamed to be "broken". He thought he wasn't a man anymore. He knew he couldn't work so now what was he supposed to do? I was mourning the future I thought we would have while trying to stay strong for him and letting him know that we will figure it all out and will be just fine. He was depressed on top of everything else.

In seeing all the things he needed me to do for him, I began to really get my new "job" down to a science. When I wasn't directly helping him, I was trying to figure out how we were going to pay our bills, networking with other wounded warrior wives, and reading about his injuries. During the months and months of VA appointments, Dean couldn't drive so I was it. He would have 10 to 20 appointments a month. All of this business began to take its toll on me. I was getting burnt out. Along with helping Dean, I was still being little Dean's mom. Add to those roles the fact that living with a PTSD-TBI veteran was NO picnic and there was lots of fighting due to misunderstandings, fighting due to him feeling dispair, lots of hurting my feelings because he was misunderstanding our whole situation. I would worry that he would kill himself because I knew he thought we'd be better off financially if he were dead and he was alone with no one to truly understand what he was going through. I had no time for me and I was getting emotionally & mentally beat down by our circumstances! I became depressed.

This is not my husband???

It took only a few days and I knew that this was not the Dean that I sent to Afghanistan a year ago. I knew that this was more than just reacclimating. The first thing I noticed was that he was forgetting what I told him 10 minutes ago, then he was repeating stories he had told me earlier that day over and over. He didn't want to leave the house. He wanted to be alone a lot. He couldn't handle the lights or sounds of our house. And as he became more and more accustomed to being back home and now wearing his civilian clothes, he settled into his new self even more. Where just a few weeks ago driving in the car was this routine we had to do to get him home for a day, now driving in the car was a very scary endeavor. I realized that when he was in uniform and in the car, he was being a soldier and "soldiering" his way around the world....tough exterior, always battle ready, no weakness! But in civies he was afraid, vulnerable, and alone. When we would drive, he would freak out that me driving 20mph was WAY too fast. He was jumping out of his skin at any random piece of garbage on the road. In his mind everything around him could be an IED and blow up. The cars that drove next to us could be an ambush. The people at the store could be following him and watching him and could take him out. Leaving the house became too much to handle.

Way back in May, during his R & R he wore civies and wasn't like this. But looking back I now had a deeper meaning to attach to his statement that "this isn't my home, my home is in Afghanistan". In May wearing his civies was just a costume he was wearing to fit in while on this "vacation" from battle. He wasn't really here....he didn't live here. Yes in May he was nauseous in the car and thought I was driving too fast but he wasn't as emotionally reactive because he was still being a soldier maintaining his strength to back to battle. Now in November was a whole different story!

As I started to realize how different he was, I started to do what I always

We began our journey with the VA in December of 2010, got super lucky to get the most awesome primary care doctor on the planet, and started to get confirmation of all the problems that had been hiding underneath his tough exterior. While at Ft Lewis he tried to tell them that his back hurt and his neck hurt, but they didn't listen. They gave the same scripted response that the papers say he's here for the elbow and so that's what they will treat him for. Nobody at Ft Lewis paid any attention to all that was going on with Dean and nobody was communicating with me at all. They told him that he's taking up a bed that a soldier with no legs could be using. They told him that he's not big Army, he's National Guard and so let them take care of you. They made him feel so worthless there which only added to him feeling depressed. Now at the VA he was being listened to and encouraged to express his feelings about things. He told them his back and neck was hurting so they sent him to get MRI's and x-rays. He said he couldn't hear things very well, they sent him for a hearing test. He said he was repeating things and forgetting things so they sent him for TBI testing. This went on and on from December of 2010 until about September of 2011.

In that time we discovered the extent of his injuries. He had sustained a broken back, likely in his first blast. He has degenerative disc disease in his back and neck, some hearing loss, TBI, severe and persistent PTSD, headaches, balance problems, tinnitus, and sacro-illiac dysfunction.

Throughout this year of discovery, I accompanied him everywhere and became his working memory and decision making helper. I became his calming safety and his rock to lean on. I became his caregiver.

His injuries have come to define our life now since every minute of our family's day and our future plans are all determined by them. Day to day I remind him to take his medications, to wake at his intended time, to eat, to shower, to put clean clothes on, and to our day's activities. I remind him of his goals and why they are important to him. I remind him of our discussions and the conclusions to them. I keep him on track. I also watch him for symptoms that visibly show but he doesn't recognize like him having a bad balance day or being dizzier than usual or him having hurt himself yesterday by overdoing it and so to take it easy today. I have to try and control the noise level in our house (with a 3 year old boy) and be mindful of lights. I can tell when he has a headache and know to ask him for verification because he won't know that he can take an Imitrex and he won't know when he can take another one. Why not just set an alarm to go off and remind him of these things? We have tried to set alarms for things and he looks at his alarm, reads what he needs to do, heads off to accomplish the task, and by the time he gets to the right room he forgets why he came in there and finds some other reason to be there. He doesn't remember that his alarm is what brought him there. Walking from one room to the next presents so many new stimuli that he is in a new time that is not connected to 2 minutes ago. For this reason, I am his caregiver.

Chapter 2

So now he was at Ft Lewis. I couldn't be there with him, so it was him against the stupidity. Since he arrived there in a private vehicle by some out of the ordinary orders, they didn't know what to do with him. They had him staying in a visitor trailer and had him reporting to doctor's appointments, but nobody really had a plan for him. All Dean could think about is getting back to his unit! He couldn't sleep, he couldn't stop thinking about the danger his unit was in and that he wasn't there to help them. He was so afraid that someone would get hurt or killed and then he would feel responsible for it. After a few weeks he found a Special Forces doctor who told Dean that if he could perform these physical tests, that he would sign Dean's papers to go back to Afghanistan. Dean completed said tests through the pain he felt. He got his wish and was sent back.

Upon arrival back in country and back to his unit, his Captain told him he had to be cleared medically before he would send him out on missions. This time they x-rayed Dean's arm and his elbow was still badly broken. His Captain flipped his lid and wondered how the hell Dean got cleared to be there???? He told Dean he was going back home! And the process to have Dean medevac'd out began.

This time Dean was flown to Landstuhl, Germany and was evaluated there. They told him he would need surgery on his arm. They gave him a TBI test and notes were made for Ft Lewis to further watch this. From Landstuhl he was flown to Ft Lewis. This time when he arrived there, they knew what to do with him. They housed him with wounded warriors and got him in their "process" of supposedely helping them. It's the end of August 2010 by this time and Dean knows that there is nothing he can do to be sent back with his unit. So he begins to realize that he's done fighting.

Depression starts to set in which comes out in anger mostly and he sleeps a lot. After a couple weeks there, he starts to earn weekend passes which means I drive up there on Friday, we drive home Friday night (3 1/2 hour drive each way) he gets to be home Saturday and on Sunday we drive back up there. During the months of September through the end of October we got to spend most weekends doing this travel routine and this entire time I hadn't really noticed anything different about Dean. During that two week R & R we spent together back in May I hadn't noticed anything different about Dean either. I mean, ya he was distant, easily angered, not really "here", and slept a lot! but I attributed all that to him trying to reacclimate back to the States??? I didn't know anything. When I asked him about Afghanistan he made sure I knew that that subject was OFF LIMITS! When we drove in the car he always felt like he was going to throw up (which was very unlike him). Again I just assumed all part of reacclimating? During these weekends together we didn't hardly talk. On the trip home Friday he complained about how horrible Ft Lewis was, how they had him running all over the place and he couldn't understand why. He was angry because he believed they were "out to get him" and trying to throw their weight around by confusing him and making him look stupid. He would tell me about their nice, clean, neatly pressed uniforms and how they didn't know shit because they've never been in country. He hated it there and he hated how they made him feel there! Saturdays were reserved for him sleeping. He said he couldn't sleep well at Ft Lewis and at least he was a little more comfortable in his own bed so he was trying to make up for lost sleep on Saturday. Sunday was spent packing up, explaining to little Dean that we had to take daddy back the the Army Base and console his poor little feelings....and we would talk about how Dean was going to hate being back up there. He began to cling to me as his salvation from that hell.

It wasn't until he returned home for good right before Halloween in 2010 that I knew there was something terribly wrong!

Dean's experience in Afghanistan

My husband Dean was deployed to Afghanistan from November 2009 to 2010. He is a combat engineer and his unit's mission was to do route clearence in Helmand Province for the Marine Corps.

On March 23, 2010 he was struck by 2 IED's within hours of each other. Both blasts knocked him unconscious for at least a few minutes (although he doesn't quite know how long). The first blast (an anti-tank mine) happened right underneath his driver's side tire of the truck he was driving. When he came to, he went to get out of the truck and fell into the hole the blast had left. He got up and started randomly picking things up....not really aware of why or what he was doing. He finally realized they were in a fire fight and he settled into his training and began to fight. After the firefight, he was told to drive in another soldier's truck. The terrain they were driving on was treacherous! He can only liken it to driving on a jackhammer with your body repeatedly slamming down onto the seat and for his unit they drove like this for 15 to 50 hours at a time....non-stop....6 to 10 days at a time with a 2 to 3 day "break" in between missions. The "breaks", however, were spent repairing equipment for the next mission.

While riding in the 2nd truck he was in such excruciating pain. He had to take his Kevlar off (which you are trained NOT to do!) and hold his own head down to his knees by putting his hands in his open mouth and holding his lower jaw. His back and especially his neck and head were pounding to the terrain. About 2 hours later, while riding in this 2nd truck, they hit another anti-tank mine. This blast tossed the guys around the inside of the truck and further cemented Dean's injuries. He doesn't remember anything after this blast for quite a few days. He knows they completed the mission and returned back to their FOB.

When Dean's unit went outside the wire, they were gone 6 to 10 days in the middle of nowhere with nothing around them. They were their own self-contained "city". They had no other soldiers to rely on for help or backup. It was their job to get the Marine's to their next location safely. They drove at 5mph or less and always had guys on foot detecting IED's as well. The whole unit was under a tremendous threat every moment of each mission...any moment could be their last.

A couple weeks later Dean was driving the 916 (like a semi truck) when he was hit by another IED. This one hit the rear passenger side, lifting the truck's rear, blowing out the rear window of the truck and jolting Dean and another soldier up and forward. Dean remembers hitting his head on things and being very shook up. He doesn't think he lost consciousness with this one...but the first two blasts had already scrambled his brain and so things after March 23rd are not remembered well.

I've heard statistics that 80% of Dean's unit was hit by IED's at one time or another and so they all suffered with the same constant complaints of headaches and backaches. The medics didn't seem to be able to tell who was affected worse than who and no one was ever medevac'd out for brain or back issues. As for Dean he says it was pounded into their heads that if they said they lost consciousness when asked by the medic about the blast, that they would be medevac'd out and that the helicopter used to transport them would not be available to a more seriously wounded soldier. Dean always reported to the medic that he didn't lose consciousness. He always kept on going through pain and confusion.

At the end of April 2010 he was at the FOB and following orders to go get something. He was running between the tents in the pitch black darkness (there are no street lights and someone had not properly marked the tent wire so that it could be seen at night. He tripped over this tent wire and stuck his arms out to catch his fall. His body came down mostly on his left arm and as he hit the ground he heard a loud *snap*. He was in instant, excrutiating pain! He went to a medic to have it looked at and was told it was probably a sprain. It continued to swell and turn black and blue over the next days and he saw another medic who said the same thing???? He was sent out on missions and was totally fine with that (going on missions was what he signed up for and what he loved to do!). As his R & R date approached the medics cleared him to come home for his 2 week visit. When he got here, I took one look at his arm and knew this wasn't a sprain!!! Not knowing how military procedures worked (we were new to this life) I took him to Kaiser ER the next morning. Their x-rays confirmed that he had a bad break in his elbow and a "non-union". News of this injury traveled through the units' wives and made it to his Lt. Col. who was here in Oregon. He told us we had to get Dean up to the nearest military base (Fort Lewis in Washington) ASAP. He said someone would contact us to let us know what to do.

From there we followed the instructions we were given. I took him up to Ft. Lewis and that's where chapter 2 begins - lol. What a joke of an experience he had there....