Lt Dan Band Week, Palm Key Resort & The Independence Fund

Can I just start by saying "WOW!"  This is going to be a fantastic week!!

Lt Dan Band Weekend (week) is going to be amazing.   Since the moment I signed up and started talking to the various people running this event, I felt comfortable with them and kind of in awe of what they are doing.  And I still didn't realize until I got here how much is really gong on.  And they are taking care of all of it for us.  And although it sounds cliche', it really touches my heart.  You wouldn't believe how much they are really taking care of...the lodging at The Palm Key Resort, meals (luau, italian, etc), all the activities which include: horse back riding, kayaking, 11 mile bike race/ride, massages, groups for the caregivers, speakers, several different art classes (metal sculpture, clay, spray paint art, etc), fishing with O'Neil Williams, civil war history tour, nature classes and tours, bowling, skeet shooting, photography classes, yoga, archery, manicures and pedicures, live entertainment...a LOT!!!  And don't forget the big draw of the whole weekend... Gary Sinese's Lt Dan Band concert.   

Our trip here had a rocky start.  A little family drama yesterday caused Steve to be very worried about the whole trip.  What had so far gone smoothly and with no sign of worry (much to my very pleasant surprise) quickly had him stressing about the safety of the house, if our kids were going to be well taken care of and get to all their stuff all week on time, if the trip was going to be safe, etc.  Lately any stress just knocks him out.  He may as well have taken one of his sleeping pills, because he's out cold right after.  As the evening went on he seemed to be better.  Today on the way here he was nervous (me too!) about what this week had in store, about meeting new people, housing arrangements, etc.  but he held it together well.  Just made for a very quiet drive.

Once we got here and started to check in, I thought all was lost.  First, we were the first people to arrive.  These ladies that were here to help were AMAZING, and because we were the only ones here, they were very excited and ready to talk.  I was too, and was chatting away with them while waiting to check in.  I could tell he was starting to get tense, but it wasn't until they started asking questions about his service that I started to think he wasn't going to make it.  So much credit to these awesome women, because they caught on right away and completely stopped any service talk at all.  Okay, whew, crisis averted!

BUT, then they told us they were switching us from a 5 room cottage where the people weren't going to be in until later in the week to a 2 room cottage where we'd have our room mates today.  Whoops!  We didn't realize we'd be sharing the cottage with other families.  I'm NOT complaining, and neither was Steve...although we were both totally freaked out I know I tried hard not to show it because we are both just very grateful to be here. I braced myself and I could physically feel him trying to relax, so I took him outside to have a smoke.  While we were out, apparently the 3 of them spoke about how they could tell how tense and anxious Steve was and when we came back in, they offered us the single bedroom cabin.  Yeah, I'm not embarrassed...I cried. I was just so impressed that they saw what he needed and were willing to accommodate.  And Steve?  Well, it was instant the way his demeanor changed.  LOL, I won't say he got happy...but he didn't look like he was going to have a melt down anymore.

Of course, now I feel guilty, like someone else who may need it isn't going to get it...I don't know why I do that to myself...I mean, we need it!

Anyway, after checking in we signed up for the activities we're participating in and then just strolled around.  Being stressed out put Steve to sleep, so I went back up to the rec center and hung out up there a while.  I wanted to thank them, and instead, they spent the time thanking me and Steve and while I was there they gave us a quilt, too!  Now I'm back in my room...there are no TV's, I don't want to sleep, so I just thought I'd update since I haven't been on here to write in forever.  Today and tomorrow are total relaxation days...no planned activities...and just what we need.  We have a back porch with rocking chairs and a swing that overlooks the "blue bottle trees" (yeah, trees with blue bottles on them...they are beautiful) the labyrinth and most importantly, the marsh.  I'll add pictures soon....

I'll update throughout the week, tell you what we learn in the classes (caregiver class called "who is taking care of you?")...I don't think I'll be able to say enough good things about our experience here, because so far...it's stellar =)

Long term inpatient treatment sucks for those at home

Let me warn you...this is ugly, cry baby, and selfish....it's mean, it's not at all in a positive light, and it sucks...maybe it's me reading too much into things (that's of course what he tells me) but even if it is...it's exactly how I feel today (and I wrote this 2 weeks ago and sat on it...so it's how I still feel)

I'm repeating all of this because I've heard it over and over and over again from other spouses....and I didn't take it seriously.  Or, rather, I did...but there is no way to prepare yourself for it.  It's one thing to tell someone not to take it personally when the person you love treats you bad, but it's another altogether to actually NOT  feel bad about it.  And although I see a change in him now toward the end of treatment and I am also adjusting at this point, the last 5 weeks have been some of the worst of my life...

Yes, worse than the almost 3 years he spent in Iraq, and worse than anything that has happened since.  Why?  Because I've already dealt with him coming home as a different person once, and now, I'm going through it all over again...how many men can I have been married to in that one body?  The man who is in treatment now is a FAR cry from the one who left, and not everything new about him is good in my eyes...

In the beginning of this treatment, he was horrible to me...mean, dismissive and threatening to not come home because HE was getting better and I wasn't (he's continued to say that throughout treatment...just said it today as  a matter of fact).  He was saying he may have to stay somewhere else because us still being messed up at home might threaten his recovery.  And I've spoken to SEVERAL women who have said their's said the same thing.  I've been told more in the last 5 weeks that I don't understand him and that he's surrounded by people that do than I have in the last 6 years. Again, this seems to be a common thread at long term rehab. At some point I had to remind him that the things he was saying to me and the way he was treating me made me think he forgot he was coming home to US at the end of the treatment and that he wouldn't have these guys with him anymore.  Does he think they are going to drop everything for him once they are all home in their normal lives when he needs to talk?  No, they have wives and families at home too.  Will they remain friends?  Sure...and I'm sure they will help and be there for each other.  But he's coming home to us.  

The emotional distance between us is huge.  Every time I bring up feelings or emotions he can't handle it and ends the conversation because he "doesn't want to freak out there."  Well, is there a better place to freak out?  He keeps reminding me that he's there to deal with PTSD, not our family issues.  Okay, so you are going to go to family therapy with me when you get home, then, right?  No?  You can't handle that?   So, I'm WORSE than PTSD?????

Also, he seems to now think that he can say anything to me, and it's my job as a PTSD spouse to NOT react, even when he's done something wrong ....and NEVER question his actions, or he'll just shut me off and not speak to me.  And his doctor reenforced this..."he's dealing with so much guilt, when you tell him he'd done something wrong he feels like a failure all over again"  Well, you know what?  Tough SHIT!  He was NEVER a failure...and messing up once in a while doesn't make you a failure either!  You know what makes you a failure?  Not being able to talk about when things go wrong and work to correct them.  THAT makes you a failure.

Besides that, I've been his advocate and partner every step of the way, and was totally unprepared for not having a place in this at all.  It's a huge adjustment going from being 100% involved, at every appointment, helping with every decision,  to being left in the dark except a 15 min phone calls from a doctor once a week.   And no one seems to give a shit about the family at home.  PTSD may start as the service member's injury...but we all know before very long it becomes the entire family's.

So, I have two major faults in myself here....I'm jealous, and I resent the help he's getting.

My jealousy is HUGE!!!  I mentioned the whole "I don't understand" thing...but he's also really not talking to me anymore.  And I don't feel like I'm first in his life....somewhere we lost out to the war and the soldiers he served with...we'll never be more than a far distant second place to that.  At least that one he's never said directly...but actions speak much louder than words.  I am not willing to be in second place...not to a war, not to anything.  I realize that is MY issue...but it's one I have to figure out quickly, because I'm tired of making him first in my life only to fit in wherever I fit in.

AND, I'll admit, I resent it...I resent that there is help for him and no one else... resent that the kids and I can't find a freaking therapist familiar with combat PTSD and the family...I resent that he's had the last several weeks where he hasn't had to deal with the realities of life and focus on getting well and our family is going to hell without him here (and I can't talk to him about it because it upsets him)...our reality is we live with a ticking time bomb and even him being away hasn't insulated us from that...the kids are miserable, and don't understand so they are acting up, everything that normally has to be done still has to be done....and I don't hear him saying "thank you" for anything.  Hey, I realize it's expected of me as the person who loves him....but a little recognition every once in a while would go a long long way.  I resent that there is no gratitude, that I'm taken for granted, and that there is nothing in place to help us and no break ever...

So after all that bitching...I also need to say this...I'm thrilled he is doing this, because even if it ruins our marriage (which I think it very well may have) he needs some relief from this pain...and it would be VERY UNFAIR of me not to acknowledge how much hard work he has also put into this program to help heal himself.  His doctor has said again and again that he's written some of the best narratives he's seen.  That he's doing all the assignments  and giving them 100%.  I'm very happy for him because he tells me he's doing better, and that's what it's all about, him recovering.  But however it has benefited him, it's done the exact opposite for us at home. I can't ever remember being so worn out, lonely and uncertain of our future together as I am right now.

The man who came back from Iraq wasn't the same one who left me, but that was many years ago and I hadn't already gone through all this pain with him.  This guy is yet someone else new coming home to me...and I don't know that after everything I've been through with the other Steves if I can start over again with someone new...I still love him with everything in me, but I don't know how much is actually LEFT in me.

No Laughing Matter...

So I'm a little freaked out right now. You've got to excuse my self indulgence here...I'm kinda talking myself through something...and taking you on the journey...because I figure others can relate (if anyone even reads this...lol...who knows who sees it.) This is really just me speaking from the gut...everything may not come out right.  Some of it may be offensive, although it isn't intended if it is.

I was just talking to a friend about how we are dealing with something we are both going through with our spouses right now.  She said she was trying not to jump to the worst case scenario.  My comment back was innocent, and intended to help...all I said was that I try to make up best case scenarios in my head, because after all...it's just as likely to be the best as the worst, but even so, I can't focus on those.  That we are all just a little bit jaded, because in our experience, we CAN'T discount the worst case...because for us, it happens sometimes.  So we get ourselves all worked up, panic, cry, get angry, lose sleep, can't eat, assume our marriages are over, and think of every possible horrible outcome....and then find out it wasn't nearly as bad as we expected...that we "invented" the majority of the bad in our minds.

And then, I realized I was describing hypervigilance...one of those BIG signs of PTSD.  I've "joked" for years that I probably have secondary PTSD.  I'd do something "abnormal" to others, and then flippantly toss out there that it must be secondary PTSD.  But today, after  that one comment to my friend, (have you noticed this pattern with me...reality usually hit me like a ton of bricks when I'm not expecting it) I started thinking back over the last few years. The increased frequency when my husband has told me that he and the kids have to avoid me sometimes, too.  How quick I've gotten to jump to conclusions.  How I assume everything is going to be doom and gloom.  So, I pulled up the below list of symptoms to really take a look at myself (with my comments):

While everyone experiences PTSD differently, there are three main types of symptoms:

1. Re-experiencing the traumatic event
2. Avoiding reminders of the trauma
3. Increased anxiety and emotional arousal

Symptoms of PTSD: Re-experiencing the traumatic event

• Intrusive, upsetting memories of the event----CHECK! Of course I relive the events that have led us to this place...they are as much a part of our lives as the good days.  It's hard not to think of the worst when you always think you are  just the wrong word away from disaster at any moment.
• Flashbacks (acting or feeling like the event is happening again)---OMG, I do that!  I don't feel like the event is happening again, but I DO have the same intense dread and depression.  I just spent 5 days not being able to eat or sleep over a hint that something may be wrong.  All I could do was think about when it happened before and I made myself sick.  Of course, the reality was I was overreacting and was wrong about what happened.  This is an ever repeating pattern.
• Nightmares (either of the event or of other frightening things)---horrible, worst case possible, night after night...I can't even talk about them...but I avoid sleeping until I'm so tired I know I probably won't remember them.
• Feelings of intense distress when reminded of the trauma---only because being reminded of it, just further reminds me that it not only can, but probably will happen again.
• Intense physical reactions to reminders of the event (e.g. pounding heart, rapid breathing, nausea, muscle tension, sweating)--I just told someone this week...the only time I sweat is when I'm dealing with this overreaction of mine...I get so nauseous and worked up that I end up passing out and spending a day or two in bed from sheer exhaustion of my body on overload

Symptoms of PTSD: Avoidance and numbing

• Avoiding activities, places, thoughts, or feelings that remind you of the trauma---here's the rub....EVERYTHING Is a potential for our "trauma"...leaving the house and interacting with others is always a scary proposition.  I never know when he's going to freak out, or where.  So, at least at home, no one else is involved.
• Inability to remember important aspects of the trauma--I don't think I have this issue...if anything I remember far far too much
• Loss of interest in activities and life in general--see above...life in general is a mine field (excuse the military expression...it seemed to fit)
• Feeling detached from others and emotionally numb--again, I don't think this is so unnatural, given our situation...it's how you cope...or how your body copes, I should say...once you've had so much, doesn't it just make sense that you'd feel numb.  Things are either FANTASTIC...HORRIBLE...or Eh
• Sense of a limited future (you don’t expect to live a normal life span, get married, have a career)--This is a funny one for me, too.  My husband spends a lot of time telling me what he expects me to do with myself in the future.  I don't see a future where I'm able to talk to others like a "normal" person again.  I don't see being able to leave the house daily and not worry about what is happening here.  And I also think that's perfectly normal, considering our life.

Symptoms of PTSD: Increased anxiety and emotional arousal

• Difficulty falling or staying asleep---LOL...I've yet to meet a caregiver or a veteran who sleeps
• Irritability or outbursts of anger---it's ironic...I've spent so many years focusing on his anger and chastising him for his behavior....and I hadn't realized how often he has told me that the family has to be extra careful around me.  Hadn't thought of all the slammed doors I've been responsible for.  All the times I don't even want the kids to talk to me because I'm afraid I'd explode on them. I'm feeling like a total heel right now.
• Difficulty concentrating--This is going to sound obnoxious...but I'm used to being one of the smartest people in the room.  I've spent a life thirsting for knowledge, but not ever really putting it into application.  That said, I have always taken pride in keeping my mind active and keeping up to date.  Except here lately, I can't manage to read a book, let alone figure out how to put together a transformer or help the kids with homework.  This bothers me more than anything.  I've always been able to get myself past a panic or depression by keeping my mind busy.  But when your mind stops doing what you expect it to, it's beyond frustrating.  It just adds to the depression.
• Hypervigilance (on constant “red alert”)---This is where we started this conversation....and lets talk about it a little more.  Where is that cut off between being vigilant, and hypervigilant? I mean, is it hypervigilance if your current reality requires you to be on that state of alert?  An (unequal, but fair) example:  When our soldiers are at war, it's not hypervigilance for them to be on high alert at all times...it is required for their survival.  When they come home, that level of hypervigilance is unnecessary.  There aren't IED's or snipers on roof tops.  In their case, they are trained to be in that state of mind.  It's kept them alive.  Why would they stop searching for the danger if it's worked this far?   They are stuck in that survival mode, even though the threat level has gone down. And that makes perfect sense.  They still perceive the threat as high, and with what they have gone through, who could blame them...it's to be expected.
  
  On the flip side, for those of us living with these Veterans, there is no reason to ever stop looking for our "IED's"....there is a good reason to be vigilant at every moment...because every moment IS a potential for explosion, or implosion.  What they call hypervigilance, I call self preservation.  Unless of course our spouse is truly doing better.  In which case, does our constant worry and planning for the worst case hold them back further?  LOL, but then, there is always the cases where they are doing better for quite some time, and then things go to hell again.  We spend a lot of time waiting on that other shoe to drop...enough so that I know alot of our spouses find it insulting.  Ugh, frustrating!
• Feeling jumpy and easily startled--aren't some people just like that?

Other common symptoms of post-traumatic stress disorder (PTSD)

Anger and irritability-already addressed above Guilt, shame, or self-blame-of course, did I start this fight? How could I have helped him ?  How must people look at me knowing I stay?  How would people look at me if I left? Substance abuse--I have to wonder on this one.  I do self medicate...but mostly of food. Feelings of mistrust and betrayal--again, doesn't this tie in directly to the hypervigilance?  Of course I feel that way.  With reason.

Depression and hopelessness--again, again, again...already hit on above.  My room has become my fortress...I sit in here, pretend the world doesn't exist and watch meaningless TV 12 hours a day most days Suicidal thoughts and feelings--I'm not suicidal, but I will admit that there are many times that I've felt I'd be better off dead.  There is no way I'd ever hurt myself...I know that I have a full life ahead with my children, and I'd never leave them.  But I don't always want to keep going. Feeling alienated and alone--Even within our community of other PTSD wives, sometimes I feel like I can't repeat what happened here exactly.  There is always someone who says "you should leave" and there is always a part of me that wonders if they are right.  But I don't want to go.  I love my husband, and I enjoy more time with him than I don't.  Only I can figure out if that time ever comes.  I always worry that no one can relate, but the reality is, I know they do. Physical aches and pains---I've been diagnosed with fibromyalgia...I am in pain every day...it's just my new normal, and I've learned to keep going through most of it.

So, what is it I think at the end of going through all this with myself?  I think more than I ever did that PTSD is a very natural reaction to your environment.  That it's time for me to face that I am going through it too.  And time for me to really go out and get help for myself so I can continue to help my spouse.  Time for a psychologist, time to see the family Dr about the fibro, time to get back to doing things I enjoy doing.  I feel like I have a little bit better understanding of myself and what I have to do here....even if I feel a little more scared than I did 24 hours ago.  Gotta go...I've got a lot of phone calls to make and a life to try to start living a little better again.