Saturday, July 31, 2010

We Have a Winner!

Did you ever have one of those moments when you think, "Ding!  Ding!  Ding!  We have a winner!"  Ours was in December 2007.  Sean had been in the states for 16 months, and home for seven months.

During a routine physical at the CBOC the nurse told us the VA had a new set of questions to ask each veteran who had served in Iraq and Afghanistan.  This set of questions was designed to help identify soldiers who may be suffering from a
brain injury (the information contained in this link is an accurate reflection of what Sean experiences).  The questions were simple, "did you ever experience a fall?"  "Were you near any blasts or explosions?"  "Were you ever unconscious?"

Sean was answered yes to each of the questions.  The PA sat down with us and explained that he suspected some of Sean's symptoms were due to a concussion, or multiple concussions, he may have experienced from his falls and exposure to blasts from mortars.  Sean was given a referral to the polytrauma unit at the VA Hospital for additional evaluation and testing. 

While this was not necessarily the good news we had been searching for--always hoping there would be a "cure"--it was progress at last.  I felt like I had been saying forever that things were not right, and now at last someone was agreeing with me, things are not right.  It was frightening (this was never a diagnosis we had even remotely considered) and reassuring at the same time.  I thought if we could figure out what it was, we could figure out how to deal with it. 

Not Just Weird, Scary Weird

While many of Sean's behaviors are frustrating for all of us, a few have been downright scary.  I don't mean scary as in we were fearful of him or he was violent, but frightening because we don't understand what is going on with him. 

In the summer of 2007 my father was buying a house in town. Sean and my dad had talked about the house, with Sean asking questions about the furnace, water heater, and shingles. Sean offered to rent a carpet cleaner and help them clean the carpets before they moved in. Later in the week Sean and I drove to the new house and walked around the yard to check it out. When moving day came the following week, Sean asked who was moving. When I told them we were helping my dad move, he asked where, and did they buy a house? I reminded him that he had offered to clean the carpets and he became angry saying he had never told anyone that and he had no intentions of cleaning anyone's carpets. I left him home and went to help with the move. The next day Sean asked when we were going to pick up the carpet cleaner so he could help with the move.

Christmas Eve 2007 we were at Sean's parents' home in North Dakota.  Several of us were watching the Harry Potter DVD.  The surround sound speakers amplified the sounds of a fight scene and the loud noises scared Sean.  He clamped his hands over his ears and ran for the bedroom.  I found him sitting on the bed, head covered with his blanket, rocking back and forth, and shaking uncontrollably.  It took about half an hour before I could get him to take his hands off his ears and stop rocking.  When he finally started talking he kept asking, "What happened?  What's wrong?  What did I do?"  This episode was one of the first big ones witnessed by all three kids.  We spent that night in the bedroom with all three kids watching a movie while Sean slept.  They spent the night in the room with us. 

The next morning when Sean got out of bed he came to the table wrapped in a blanket.  His eyes were open, but he had a blank stare and would not respond when I talked to him.  He was off balance so I helped him to a chair.  He remained in that chair for over half an hour staring blankly and not giving any indication he knew anyone else was there.  Finally, he got up, walked back to the bed and fell asleep.  Later when he woke up he was very confused asking where he was, who I was, and what was going on.  When he did start to make sense, he was exhausted and slept most of the day.  Sean has many of these episodes, up to five a week.  Most of them last less than five minutes.  When he comes around he usually does not know where he is or who I am.  He is scared.

In spring 2008 I had opened the windows in the house to let in the fresh air.  Sean has terrible allergies, but we routinely open the windows in the spring and fall for limited times to freshen up the house.  Sean came home and saw the windows open.  He started yelling and swearing at me because he has allergies and I didn't care about how he would feel.  He went on a rant for about 15 minutes about my incompetence and lack of compassion and understanding of his needs, all the while swearing and pacing around.  Our youngest daughter sat on the couch and didn't move.  She was scared of his behavior.  I closed all the windows and assured him I would not open them again.  Not long after, he went in to bed.  The following day when Sean came home he said, "The house is stuffy, can I open this window?"  I looked at my daughter and we both looked at him.  Sean said, "What?  Can I open it or not?"  My daughter asked him why he wanted it open when he was so upset about it the night before.  Sean had no memory of the previous night's events.

One morning Sean was driving our daughter to school before he went to work.  On the way the transmission went out in the van.  I was already at work when the call came from Sean.  He told me the van stopped and he couldn't be late for work.  Since I was already at work, I told him he should call for a tow and call someone to give them a ride.  He told me that he wasn't going to be late for work, so he left the van parked at the curb, and left our daughter waiting in the van without a ride.  He was walking to work.  I had to get another teacher to cover my room so I could pick up my daughter and get her to school.  Then I called the tow truck and made repair arrangements.  I called to let Sean know that I had taken care of it all.  He did not thank me, but continued to talk about how he wasn't going to be late for work.  I could not believe that a grown man would act so selfishly.  I think in hindsight that he simply did not know what to do in that situation.  I know that a broken down vehicle can be a sitting duck in a war zone, so perhaps that had something to do with his actions and he didn't understand that he wasn't in danger.

That summer Sean was off work and had volunteered to help drive the kids to their different activities.  I had plans on this particular day, and Sean was in charge of getting the girls dropped off.  He called me yelling and asking why the girls needed rides and why I wasn't taking them.  I reminded them that he had offered to do this and he responded with, "Just because I'm not working doesn't mean you can make me be everyone's (swearing) chauffer!"  Then he hung up on me.  I had to leave my activity and take care of the girls.

One day Sean had been confused most of the morning.  On days like this he would repeat things such as, "What should I do?"  "Where do I go?"  "What did I do?"  At one point he got up from the couch and said he was going to replace the blinker bulb in the van as it was burned out.  He returned to the house about 20 minutes later and said he was finished.  He laid down on the couch and started napping.  Shortly after he fell asleep, he sat up and said he was going out to change the blinker bulb.  I told him he had already done that and he was confused.  Eventually he laid back down.  This scene repeated all day.  That was the day I decided he needed a "reset" button.  I wished we had a way to take these bad days and start over or help him to catch up.

Sean has many nightterrors or nightmares.  He wakes up kicking or punching, sometimes crying or yelling.  He rarely says anything coherent, although he does sometimes talk about sirens and smoke.  He is in a state of terror when he wakes up and most times doesn't know where he is or who I am.  Many times I will wake up to hear him walking out of the bedroom (usually due to his poor balance I will hear him fall or hit the door).  When I ask him what he is doing, he will tell me he is going to the bunker. 

In the fall of 2009 our local college had their homecoming parade.  We live right along the path of the parade, so all morning there are people coming and going in front of our house.  Sean did not feel comfortable going out to watch the parade with all the people, so he said he would watch from inside the house.  The girls and I were walking with our unit's FRG group and passing out candy, so we left him home alone.  We were gone a couple hours and came home to find Sean sitting against the wall, completely covered by a blanket, shaking and rocking.  He did not appear to recognize me.  I asked him what was wrong and he replied, "The men in black are coming, they're going to get me."  I assume he saw parade walkers in costume and that disturbed him.  I got him into bed and calmed down.  Throughout the day he would come out of the bedroom saying he needed to get to the bunker before the men in black got him.  The next day he had no memory of these events.  We frequently find Sean on the floor under a blanket and shaking or talking to himself.  We have learned just to calm him and get him into bed where he feels more safe.

Post Traumatic Stress Disorder

PTSD is an anxiety disorder that can occur after a person has been through a traumatic event, or multiple events, where the person felt his/her life or other's lives were in danger.  The hallmark symptoms include:
  • Repeated "reliving" of the event, which disturbs day-to-day activity
  • Avoidance of situations that remind you of the event
  • Feeling numb
  • Hyperarousal (feeling keyed up or on edge)
Sean had a long list of problems associated with PTSD, depression, and anxiety.  While he was in medical hold he was able to hide many of his problems from me as I was not seeing him on a daily basis.  We communicated mostly by phone and he would try to keep things positive and not worry me.  So the changes in him were quite a surprise when he came home.  The first couple weeks were wonderful as the family was in a type of
"honeymoon" phase.  But soon it was apparent that Sean was struggling with many demons. 

Sean does not feel safe.  He sits with his back to the wall so he can see everyone around him.  He scans parking lots and open areas.  He has terrible road rage.  Sean is highly impatient and inflexible.  He cannot tolerate noise, crowds, new people and places.  He is easily irritated and startled.  He is angry much of the time and subject to outbursts of anger for seemingly meaningless incidents.  Sean has trouble concentrating, has memory loss, cannot make decisions easily and questions his decisions repeatedly.  He has trouble sleeping, sleeps excessively, has night terrors and night sweats where he wakes punching and kicking, but does not remember the nightmare.  He has episodes where he stares and appears to be "checked out" where he is non responsive and is very confused when he comes back around.  He repeats conversations as if they never occurred.  He forgets events and conversations.  

It saddens and infuriates me to know that while he was at WRAMC and in medical hold he told his case workers at least three times (and this is documented by the case workers) that he was having PTSD symptoms, and ALL THREE TIMES he was DISMISSED and told there was NOTHING wrong with his mental health!  Here was a soldier asking for help, and it was refused because no one followed up with it.  According to the notes, the psychologists found him to be experiencing normal stress and agitation.  However, Sean says the sessions were relatively informational and were not indepth.  I wonder now how many of these symptoms he is still experiencing four years later might have been lessened with early intervention.

Something's Not Right

I couldn't tell you what it meant, or exactly what it was.  Sometimes the differences were so slight that I thought I was imagining things or overreacting.  But something wasn't right.

I remember telling the doctors something is not right.  He's just not right.  This is not the man I know. 

Dr. K, the psychiatrist told us that the myriad symptoms were a combination of PTSD, depression, and anxiety coupled with the adjustment to coming home following a period of severe illness and isolation in addition to the experiences in a war zone. 

I came home and Googled everything the doctors said.  Although I had heard about PTSD, I did not know anything about it.  And despite the verbal information presented by Dr. K, the VA did not provide us with any information.  I would have loved a handout, a factsheet, something!  But I did my own research and found the information I needed. 

It was a scary and confusing time for all of us.  I didn't understand why Sean was behaving the way he was, the kids didn't understand the changes in dad, and Sean himself didn't know what was going on with his body (the abdominal pain and headaches persisted) and with his mind.  Imagine someone you love coming into the house and looking just the same as you remember, but acting completely out of character.  Looking back, we needed MUCH more support and training than we were given.  We did not have the resources available to adequately deal with the issues at home and help us all heal as a family.  Instead, we "made do" and "got by" by learning to either adapt our behavior to ease Sean's discomfort, forcing him into unpleasant situations, or avoiding things altogether.  Our home was full of arguing, hurt feelings, and lonliness as we all tried to separate ourselves from the problems surrounding us. 

One of the first things I noticed was his agitation.  Sean was always upset about something.  The kids were loud, the dog wanted out, someone ate the last of the bread.  He was not just irritated, but would rant and rave about the smallest things.  Other times he would agree to do errands or pick up the kids, but when the time came to do so he would explode about the inconvenience and my expectations of him.  

Watching Sean struggle with chronic pain, excessive need for sleep, gave me great concern about his job as a lieutenant at the fire department.  On his days off he would sleep all day, eat some supper and sleep all night.    He was very run down and did not have energy for daily tasks he used to do.  When he failed his paramedic test (a job he had had for almost 15 years, and  class he was certified to teach) I knew the end of his career was coming.  He was not able to keep up or think quickly enough to do his job.

Friday, July 30, 2010

Entering the VA Zone

Now that Sean was home his medical care would fall under the Veterans Health Administration through the Department of Veterans Affairs.  Aberdeen has a Community Based Outpatient Clinic (CBOC) and there is a VA Hospital in Sioux Falls, SD 203 miles to the south. 

The transition from the Department of Defense (DOD) to the VA system is not exactly streamlined.  Sean had to make copies of all his military medical records to bring to the VA as the two organizations do not yet have electronic record sharing.  The doctors then had to review extensive records along with Sean's accounts of the past 19 months in Iraq, Germany, and in medical hold.  Every encounter with a new provider meant starting at the beginning and going over the details. 

Sean was evaluated for persistent GI symptoms and mental health, specifically, Posttraumatic Stress Disorder (PTSD), depression, and anxiety.  He was assigned a psychiatrist at the CBOC along with a Social Worker for therapy. 

The CBOC did not have a doctor on staff, so Sean was evaluated by the Physician's Assisstant and then referred to a physician at the VA hospital.  Thus began our regular travels to Sioux Falls for appointments.