Grief

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 this...no 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?

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.

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 injuries....how's that for a math problem....lol.

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 :)

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

• By: Bethany Monroe
• Published: 6/27/2012 1:17:38 PM

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 week...to have David help Dean to write his ideas/wants/needs/to do's in his folders....to 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?  

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 ok...no 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 anything....it's just one more crazy happening in the TBI household....one more thing I gotta keep track of.