Saturday, January 29, 2011

Letter to Michelle Obama

Dear Mrs. Obama,

I am the wife and a full time caregiver of a severely injured soldier. This journey began 21 November 2007, the day before Thanksgiving. We have been living with the effects of this day ever since. We have had many blessings and struggles along the way and continue to do so every day. I am committed to my marriage, my children, and my role as a caregiver and advocate. However, this is not an easy road to travel and I need your help.

My husband did suffer physical injuries initially, but now is left with the invisible ones, PTSD and TBI. His PTSD includes dissociative episodes, depression, migraines, anxiety, and nightmares just to name a few. Of course, this is all complicated by his TBI. This all affects our entire family in every way. We are struggling here, just to have safety and peace within our own home.

Living with someone with PTSD on this level is lonely and frightening. There are not many that have it to this extent or level. I have had numerous professionals tell me that his is the worst they have seen. I can't decide if they tell me this to comfort me or to sympathize with me. We have several people in paid positions who are supposed to be advocating for the care he needs. Often times, they too do not have any answers for us. Therefore I am left to search for some answers, which has led me to reach out to you.

Currently, my husband Allen is in a residential treatment program in Yountville, California called The Pathway Home. It is a program that I found on my own, after several months of searching, and that is really a last resort for us. If this program is unable to get my husband to a safe place with his PTSD, we will have to search for a place he can reside long term. That is a worst case scenario for us but one we may very well have to face. It just may not be safe for him to live at home with us any longer. He has severe dissociative episodes where he has a complete break from reality. These episodes put him in full combat mode and everything he sees is in his head. While in this mode, he is a soldier defending himself and his guys. He may be in a fire fight or hand to hand combat. Anything becomes a weapon, and we never know if we are on his side or if we are the enemy. These episodes are very frightening for all of us and our boys, ages 14 and 7, have witnessed them numerous times as well.

I know that we are not the only family facing these challenges. Families like mine are fighting everyday to get care, treatment, and benefits for their hero and their family. Often times we end up being labeled a "benefit seeker" and therefore get fewer benefits than we genuinely deserve and need. With a spouse suffering like mine, I am unable to work and help provide for our family, so we are counting on those benefits our family has already sacrificed so much for. It just shouldn't be this hard. We shouldn't still have to fight the war once our spouses come home. But, the reality is, we do. My husband's VA claim was submitted 15 months ago, and we are still waiting for a rating. That means that since May, when Allen was medically retired from the Army, we have been living on half of the income he was making on active duty. This is a financial disaster for us with no hopes of a recovery since we can look forward to living on a set income for the rest of our lives.

Another issue we are personally facing is housing. We own our home, but there are huge environmental triggers very close to us that contribute to my husband's dissociative episodes. A mile from our house is a rock quarry that blasts 1-4 times a day, depending on the weather. This shakes our house and is perceived by my husband as incoming. Right across the street, about 100 yards away, is a very busy railroad depot. Therefore they connect the trains right next to us and they boom together and once again, vibrate our house. Since we live in the city limits in the Midwest, we also deal with weekly tests of the tornado sirens. These are the same sirens they use in a combat zone to alert our troops of incoming. All of these things are constantly triggering Allen and sending him right back into combat. That leaves me and my children fighting to bring him back home. We have to shove him in the shower and get cold water on him to bring him back. We do not have a walk-in shower, so often this is a physical fight getting him there. He has also escalated to a much more resistant state during these episodes and has started becoming very physical with us as we try to get him back. Because we are still waiting for benefits, we cannot get our house on the market and try to purchase another one away from these triggers. The non-profits out there that are building mortgage free homes for wounded warriors do not consider the invisible wounded for their programs.

I applaud you, Mrs. Obama, for bringing awareness and attention to the whole military family, rather than just the service member. It is exciting to see things begin to change for families like mine. However, we still have such a long way to go and I pray that we will get there. Families that have already sacrificed so much should not be worrying about all of these issues I've shared with you today. We, as a nation, have to become engaged in taking care of our military families, especially the wounded ones. We need programs to help treat PTSD. We need financial assistance so that our families can have our basic needs met without worrying where our next meal will come from. We need safety nets in place that will prevent families from falling through the cracks, especially our National Guard and Reservists. We need the backlog within the military MEB and VA claims to be depleted. Our children need to have protection and security and know that we will be alright. The general public needs to become aware of these issues facing the ones who have fought for their freedom. There are so many little things they can do that would make our lives so much easier. We need your help in getting these needs met.

There is much more I could share with you. I could go on and on with example after example from my family alone. However, I hope I have gotten my message across with the small pieces I have shared with you. Given my personal experiences and my conversations with families like mine from all over the country I urge you to push forward with raising awareness about our wounded warriors and their families and to make some real change in the programs and benefits available to our heroes. I am committed to assist in any way I can beyond my own family by speaking, advocating, and continuing to share our story. Please, consider these things and let's find some relief, resources, and assistance for The Bravest Families in America.

Very Respectfully,

Gina Hill
Spouse & Caregiver of (Ret) SSgt. Allen C. Hill

Tuesday, January 25, 2011

Love and Support are Not Always the Easy Choice

I had a great conversation with a very close friend this morning about many things. This friend is a psychiatrist and has become much like family for us. We value his help he has freely given us through many crisis situations and the overall support he provides for us. He in turn, shared with me this morning how much we teach him. He told me how often he talks about us, and our story with his own patients in DC. He specifically asked me to write this post, to share with everyone one part of our conversation today.

As a caregiver/spouse especially, but also any family member of someone suffering from PTSD, we have to remember to always support and love our wounded warrior. This love and support comes in many different forms and often is not easy. I know this sounds silly to be telling people this but it just isn't as plain and easy at it seems. We have to be able to separate the individual from the illness. My husband dissociates and can be very dangerous and frightening when he does this. However, I know that he is not choosing this behavior. It is something totally out of his control, much like someone with epilepsy. They are not choosing to have seizures, rather it is something out of their control that happens. My husband is not intentionally being dangerous or frightening, it is a symptom of his illness. It is not who he is and does not define him. However, it is something that happens and therefore something we all have to be prepared to deal with. We still love and support him the best way we can.

Another part of this love and support is knowing when to step back. This is a tough one, probably one of the hardest parts of this and comes in often. Many things that my husband witnessed and had to do in war are horrific and have contributed to his PTSD. Because of these things, my husband often withdraws or gets depressed. It is natural for me to want to know what is on his mind, to know what is weighing on him so heavily. However, I have learned, that much of the time I just have to let that go. I have to let him own that and not insist that he share it with me. As a spouse, I find that I always want to know what is bothering him. After all, I am his spouse. He should trust me enough to share anything and everything with me! This is the wrong mindset for a couple dealing with PTSD. It's not that he is trying to be secretive, it's that he is trying to protect me from those horrors. As a man, he feels it is his job to protect me and due to his injuries he often can't do this. Well, as long as I can let him, this is one way he can still protect me. He can protect me from the horrors he participated in, witnessed, or whatever the case may be. I HAVE to allow him to do this without taking it personally.

I learned this lesson early on thankfully, but that doesn't mean that it always comes naturally. Often our heroes are ashamed of the things they had to do as well as the emotions they experienced in response to these actions. It is an extremely vulnerable place for them to be and I don't think we can ever fully grasp that vulnerability unless we have walked in their shoes. As their spouse/caregiver, we have to allow them the space they need, and let them know that we love and support them always. We are here for them for anything, but we also understand their need to protect us. Thank them for that. Let them know that you realize this. I think it will make a big difference for the both of you.

Even Now......Gina

Thursday, January 20, 2011


Safety is something that most people take for granted. We get in our car and put on our seat belt without even thinking about it. Why do we do this? To be safe. We make our kids wear bike helmets when they ride their bike to be safe. I could go on and on with examples of things we do, without really thinking about them, for our own safety. We have entire government departments that deal with safety. There are warning labels on EVERYTHING, for our safety. It is something we just do, without even thinking about it most of the time. It is something we expect and simply take for granted.

I too, am guilty of taking my safety for granted. I have even take my families safety for granted. However, for families like ours, who have a loved one with severe PTSD, safety is something that becomes a top priority. Those little things you have never thought about before, suddenly become top priority. It becomes the most important part of your life. Anything else is just a bonus some days. There are many, many reasons and examples of this. All it takes to see just what I am talking about is to read a newspaper or talk to someone like me.

I've spent quite a bit of time with my counselor discussing this. I just emailed her to make an appointment for tomorrow to talk about this very thing. It has been very difficult for me to grasp the fact that I can't protect my husband from everything, nor can I protect the world from him. Sometimes, he does some very scary stuff. He dissociates and acts out whatever it is that is going on inside his head at the time, which always involves some kind of combat. This is often terrifying for me, and I know him. I can't imagine what it would look like to someone who doesn't know him. During these dissociative episodes he has also done some very dangerous things that have thankfully not ended with anyone getting hurt. However, I can tell you that a couple of the episodes could have very easily made headlines had they went a little bit different than they did.

I've followed a story out of North Dakota very closely. A young veteran suffering from severe PTSD led police on a high speed chase. He had several guns in his vehicle and more than enough ammunition to do major damage. Thankfully, it didn't have a tragic ending. No one was hurt, but this young hero is now facing several felonies. He is currently in treatment for his PTSD but will have to face the judicial system soon. This very easily could have been us.

These stories are becoming more and more common all across the United States. Just google veteran and police encounters. Another big thing to google is suicide by police. This is becoming an epidemic in our country and it doesn't look like there is an end coming any time soon. We are grasping at ways to treat these guys. We simply do not have much out there for them to get help.

Pile all of this onto a family this hits very close to home to, and it is all incredibly scary. Is there somewhere residential, that guys like this can live to keep them and their families safe? Not that I know of. Instead they would end up in a nursing home on an alzheimer's unit. Really? Is this the best we can do for our heroes? How is a young guy going to be at peace or have a little bit of happiness in their life living in a nursing home? How are our families going to be safe? Could you live with yourself if you were the one that had to make these decisions? For some of us, we have to. We have no choice. We can't take our safety for granted.

Now as a little disclaimer, I am not currently having to make decisions like this. However, I'm also very aware that I may face this at some point. I pray this isn't the case, but I also have to be very realistic and know that God will never give me more than I can handle. I am strong and I have grown so much through all of this. I know that if the time ever comes that I am facing this, I will make it through. Also, if anyone you know is facing anything like this, you are not alone. There are many of us out there that live with this uncertainty everyday. I, for one, get "it."

Even Now........Gina

Sunday, January 16, 2011

Selfish vs. Survival

A few posts back, I wrote about the selfishness of PTSD. I still think that PTSD is a very selfish beast, but recently I have had more thoughts on the subject and wanted to share. In my previous post, I really didn't understand what I think I have now figured out on the subject. It is really quite simple, and yet very complex at the same time.

The selfish beast is called survival. My husband is not being selfish because he's just become a selfish being. Rather, he is being selfish because it's all he knows to do. You see, when one is so busy just surviving, there isn't much time left to think about anyone else. Thus, others might perceive this as being selfish. When in all reality, it's not selfish at all. He can't take care of anyone else if he can't first take care of himself.

During the current conflicts, my husband was deployed for almost 3 years. Of these 3 years, he was only home for 60 days somewhere in the middle. That makes for a lot of time spent surviving. He learned that no one else was going to protect him and that there was danger lurking around every corner. He learned that ANYONE could be his enemy, and also that ANYTHING could be used as a weapon. There was simply no time to think about anything other than keeping himself safe. No one can blame him for that.

After being home for 3 years, he is still in survival mode. In his mind, danger still lurks everywhere and he simply can not let down his guard. He doesn't trust anyone outside of our close circle and is suspicious of most things. He is doing what he was conditioned to do for years. He is surviving for himself and for us. His goal was to come home in one piece. He regularly told me he didn't want to come home "all jacked up." He didn't think it would be fair to me or the boys. In his mind, he is still trying to come home. It's not that he doesn't logically know he's home, but he just has a hard time staying present. He fights intrusive thoughts, hyper-vigilance, anxiety, nightmares, insomnia, anger, rage, depression, suicidal thoughts.....well, you get my point. He is still fighting for his life.

Does this make him selfish? Or is he only surviving?

Even Now...........Gina

Tuesday, January 11, 2011

Stigma of the Spouse: Why Am I the Bad Guy?

Guess I'm just sort of in a ranting kind of funk lately! Not sure what it is, but there are just some things lately that I really feel the need to get off of my chest. Today, it happens to be the fact that as a spouse and full time caregiver for my wounded warrior, I am often viewed as the bad guy. I'm not sure what this stigma is all about, but I'm about to lay out my two cents on this topic!

Thankfully I personally have not experienced this a lot, until recently. I don't think I've still really had a lot of this, but I do know that many spouses have. While I have made the choice that I am in my marriage for the long haul, for better or for worse, I understand that many spouses just can't make that same choice. As I've written about before, it is EXTREMELY difficult being married to someone who only remotely resembles the person you married. I also understand that every marriage is different. I think a lot of it depends on how strong the foundation of the marriage was before injury. If there were some pretty major problems before injury, should a spouse be required to stick it out just because their husband was sent to war and came home a new person? Each person has to make these decisions for themselves and they are not easy decisions to make, either way. Yes the soldier made huge sacrifices for our nation and will pay that price the rest of their life. However, the part that is often overlooked is that the spouse and/or kids have also made huge sacrifices that are going to continue the rest of their lives as well. I do not believe that it is possible to be so closely touched by war and not be changed. So then, why should the spouse be judged or looked down upon because they couldn't make their marriage work? Last time I checked, a marriage takes 2! (I really think it takes 3 cause I know I wouldn't still be here without God!)

Another side to this is that you never know what goes on behind closed doors. I have a friend who recently split from her husband and that is what she said about it. On the outside, he looks like he has it all together and has made the best of his life since his injury. However, he doesn't admit or address the PTSD issues that do plague him. He can hold it together until he's at home and she is the one that takes the brunt of it. I'm sure that they are not the only ones. She hung in there as long as she could, but just couldn't do it anymore. There is no reason she should ever feel or be looked at as the bad guy. Every situation is different and each has their own set of dynamics that only the couple know about. That doesn't make it ok for anyone looking in to judge either of them.

Everyday I see the support our wounded warriors receive because of their selfless sacrifice to our country. I think this is amazing and really think that there should be a lot more! I don't however see much support for the spouses, except for the support we give one another and the couple of organizations there for them like Operation Homefront's Wounded Warrior Wives. I am here to tell you that the spouses and families of these heroes are towing the line every single day. They are sacrificing enormous amounts to love and support their wounded warrior who is generally seen as a hero. Well in this spouse's eyes, the family members are heroes too. They deserve just as much support and respect as the wounded warrior receives. Many of us have given up so much of our own needs, dreams, and careers, in order to take care of our wounded warrior. Why then, are we the bad guys when anything goes wrong? Is it because we are the one not injured? Or, is it because we didn't sacrifice for our nation? Is it because we are not a hero protecting our freedoms? Well, I can tell you this for sure. If it weren't for the love and support from the families at home, these soldiers would not be able to do what they do for our country. Therefore, soldiers and their families should be given the same respect and support they all deserve.

Personally, I have felt this judgement from some of the people at the program my husband is currently at. The 20th of this month will make his 4 month anniversary there and up until last week, I had not received one bit of communication from anyone there other than my husband. (And that communication was simply a phone call to my cell phone when his counselor wanted to have a marriage counseling session right then, on the phone, with no consideration as to what I had going on.) I understand that they want him to regain his independence, and so do I. I understand that for this to happen he has to really step up to the plate and I have to let him. However, I don't think this justifies no communication for the spouse who has been there for him 24/7 for the last 3 years! I felt it when I was there helping him settle in but I just couldn't exactly put my finger on what it was. Well, I figured it out. They really have become very jaded when it comes to spouses. I recently had a conversation with a volunteer there whom we have become very good friends with and she shed some light on it for me. She explained that it is very seldom that they have a guy come through with a supportive wife. If they are still married, they rarely have a spouse who is still there for the right reasons. Therefore, they really do not communicate with anyone other than the wounded warrior. However, they do offer counseling for couples and families, but other than this it really is all on the warrior to convey anything.

Because of this jaded perspective on spouses, I have felt the stigma. I must say that it is not a good feeling and it really makes me feel for those spouses who have made the difficult decision that in order to take care of themselves, they could not stay in their marriage. After all, anyone who knows anything about being a caregiver knows that in order to be a caregiver, we must first take care of ourselves. Please then, do not judge those who have to leave a marriage in order to do this. It's not an easy decision either way, and neither choice deserves judgement. Or, if a spouse is simply venting about their husband/wife, do not just assume that it must be the spouse's fault and never the fault of the veteran. As with all of life, it is still a two way street!

Even Now......Gina

Friday, January 7, 2011

Shhhhhhhhhhhh.......It's THAT Subject No One Wants to Talk About

Earlier this week, a fellow wounded warrior spouse wrote about a very difficult subject on her blog. You can find her post here I commend Uncle Sam's Mistress for being open and honest enough to talk so candidly about such a private topic. This topic is one that I have no doubt affects most of us whose spouse is suffering from PTSD and/or TBI.

Instead of rehashing everything Uncle Sam's Mistress said in her post I linked to above, I would encourage you to read that post before continuing through mine. I will also say that while most of what she talks about in that post I can completely relate to and feel like I could have written myself, there are some definite things she talks about that I have not experienced. While our experiences seem to be very similar, we each have our own stories and experiences.

This topic is one I've thought about blogging about many times, but, because I do use our names, I hesitate. This is also a topic that I've wanted to bring up in counseling, but again, never really had the courage to do it. Well, today I decided that if Uncle Sam's Mistress could be so candid I could do it too. Not only am I writing about it and sharing it with whoever happens to read it, but I also opened up with my counselor this afternoon. This brings me to my post. I really felt it was necessary to share some of what I learned today in my session.

For me, the lack of intimacy is a great loss. When I talk about intimacy, I mean sex, but I also mean that connection that comes along with it. The playfulness, the looks, the I know what you are thinking from across the room, the I can't wait till later, the physical touch, the sitting beside one another to watch a movie, the holding hands in the car. You know, all THAT stuff. So, this is the stuff I talked about today with my amazing counselor.

I think the thing that has scared me most about bringing this up with anyone is the fact that I KNOW it's not just my husband anymore that doesn't do these things. Or, that even finds these things hard to do. I know that I miss these things but I also know that I'm not initiating them anymore and not sure that I even want to. Physical touch is difficult for my husband, and rightfully so due to his PTSD. However, it shouldn't be so hard for me, I don't have the PTSD he has. At least this is what I thought, until today. While I do not have PTSD, I do have secondary PTSD which can make physical touch difficult for me. I am also a full time caregiver for my husband which also puts a damper on intimacy.

First let's talk about the caregiver portion of this equation. As a caregiver, especially one of our generation, we would normally be giving care to our kids, not our husbands. However, with the wars our generation has been part of, more and more of us are finding ourselves caring for our husbands. So, when I look at this, I can see that I am used to caring for my kids, but have been thrown into caring full time for my husband and have been doing so for 3 years now. So, it's only natural that I might start finding it difficult to see my husband in a sexual or desirous way. After all, I definitely would never look at my kids in this way. However, with this being said, it doesn't mean that I can't work on seeing my husband that way again. I just have to make a conscience effort to see him that way. I have to open myself up to be vulnerable to him again and swallow my stubborn pride to take the initiative myself. Now, I never said this was going to be easy, but realistically what I may have to do to regain this part of our lives.

Another part of this equation is that with PTSD and TBI, their brains simply do not work the same way they used to. Now I'm sure if you are living with someone with these injuries, logically you know this. That does not make it any less hurtful though, when we are rejected or treated more like a platonic roommate rather than a wife. As the uninjured partner here though, we have to make adjustments in our behaviors and actions to compensate for this change in our spouse. For example, we have to learn to ask for exactly what we want. For us, I really miss laying on the couch together and watching movies. We used to do this all the time and it NEVER happens anymore. Oh, we still watch movies, but I lay on the couch and he sits in his chair, which happen to be across the room from each other. So what I need to do, is tell him that I would really like or I really need, for him to sit on the couch with me to watch the movie. The worst he can do is say No. The reason I need to do this is because his brain makes the gray areas very fuzzy. He isn't able to pull out what I need if I don't tell him. He doesn't get implied meanings or those subtle hints that he could before injury. If I don't tell him what I need or want, he doesn't know it on his own. Seems pretty simple but again, something that takes a conscience effort on my part. This can also be as simple as telling him I need him to look at me while I tell him about my day or whatever it is. But, it can also be more in depth and detailed to meet any situation.

One of the other things that I find in my situation is that I regularly hold in my own feelings in order to protect my husband's. I think that if he really knew some of the things I feel he would take that on as guilt. He carries so much guilt as it is, I would never do anything to add to that. Therefore, I often find myself afraid to talk about certain things. Really this is unfair of me, because I am withholding valuable information from him and it is hurting our intimacy. I can't protect him from everything, and my feelings are my feelings. They are nothing he should feel guilty about. We both have to work on this so that he doesn't take my feelings on as guilt and so that I do not constantly try to protect him from my feelings. It just ends up being a vicious cycle that ends up hurting us both. I am working on ways to word things so that I still get my "stuff" across to him without making him uncomfortable or hurt. This is a huge one for me that is my issue more than it is his. I'm also actively working on this issue and trying to implement it into our lives.

The last part I want to talk about right now is that all of this is going to take time and patience. None of this is going to change overnight, unlike the way our wounded warriors seemed to have changed so quickly. It also is not going to be easy to make these conscience changes. However, I know that my husband and I deserve to have the intimacy back in our relationship, even if that means I have to pick up the slack. After all, I love him with all of my heart!

Even Now.......Gina

Wednesday, January 5, 2011

Back into the Routine

Well the holidays have come and gone once again. The entire season of the holidays, Thanksgiving through New Years, is such a roller coaster of emotion for families injured by war. I saw so many posts on facebook and blogs about the ups and downs of wounded warriors during this time. I'm not sure what it is that causes it, but I do know that most of my friends in the wounded warrior community are sure ready for this time of year to be over!

This was a unique year for us. With Allen still being gone for treatment, we still had our share of emotional moments, but we had relative calmness as well. When we took Allen to California and left him, it was the first time he's been away from us in 3 years. That's a lot of togetherness considering neither one of us have been able to have a job outside of the house that entire 3 years! So, just the fact that he wasn't hear was hard for all of us.

Allen passed the holidays by sleeping. The Pathway Home really kept Christmas and New Years very low key. They did some decorating before the holiday, but then just let the guys do their own thing on that day. I was surprised when they didn't have a dinner or anything for them, but then I thought about it a little more. By not doing anything official, it let each guy there do whatever they wanted. There was no pressure to attend a dinner or celebration. If they wanted to pretend it was a normal day, they could. Or if they wanted to "catch up on their sleep" like my husband chose to do, they could and not feel bad about missing something. After seeing what many went through during this time, I think The Pathway made the right choice.

As for us back home, we definitely missed Allen but it really was ok. We talked to him on the phone many times throughout the day and carried on our normal traditions. We all know that he is where he needs to be right now, so that he can get better. At one point I was a little sad, but then I remembered the Christmas before this one. I remember getting so mad at him that morning while the boys were opening their presents because he slept through the whole thing! He was in the room with us, but could not keep his eyes open for anything. This year was honestly better, because he could do what he wanted in a place he is safe, and we could do our traditions and include him by talking with him on the phone throughout the day. Don't get me wrong, we definitely missed him, but we all are so blessed.

New Years was no big deal for us. We always go to my sister's house to hang out with friends there. Allen and I were actually married at her house on New Years so it is extra special. Again, we talked to him several times and he called us when it was midnight here. That one doesn't seem near as emotional as Christmas does. Allen went to the movies with a group from The Pathway Home and had a good, low key night as well.

So, now that the boys are back in school, I'm back to volunteering and running this house, and Allen is back to his classes, all is well in our little corner of the world for now. Basketball season has started with the first game tomorrow and musical theater class will be starting again later this month. Routines help all of us settle in and get on track. While I love celebrating the birth of our Savior, it sure it nice to get back to the norm.

Even Now.......Gina