Exchanging Pain for PTSD....GRRRR

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

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

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

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

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

No Communication

We had a HUGE realization today!

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

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

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

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

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

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

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

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

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.

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.

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.

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 VA....lol.


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.

Copied from: http://www.aphasia.org/Aphasia%20Facts/communicating_with_people_who_have_aphasia.html

More information can be found at: http://www.aphasia.org/index.html



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!