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.

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 like....lol.

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 too...lol.
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 understand....how 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.

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.