Monday, May 28, 2012

Monday Momisms: Memorial Day






Today is Memorial Day.  For so many, TOO many, it is a day to not only pay homage to the fallen but to their loved ones, fathers, mothers, sons, daughters, spouses, siblings.  Those who died in combat or in another way connected to service to their country.  Those who were fortunate enough not to but died after having served.  To those, I send out my sincere condolences. 


Today is Memorial Day.  For others, it is a three-day weekend, a holiday, a break from the daily routine.  It is a barbecue, a family get-together, hanging out with friends, swimming at a pool or fishing at the lake, shopping for sales at the stores.  To those, I send out a sincere hello. 

Today is Memorial Day.  For some, like me and my family and SO many others, it is a time of in-between.  Every day I am grateful and thankful my son came home from Iraq.  He didn't come home alone, though.  He came home with a physical brain injury and PTSD.  I can never look at life the same again.  I can't watch war movies and I realize they don't really end in happily ever after.  Part of me feels guilty for the pain inside when I think of those who lost even more.  It seems for the most part that only when someone goes through having a family member in a combat zone, living daily with injuries, only then can they understand or sympathize. 

To those, I have this to say:

We lost a part of our loved ones but we truly are grateful they came home.  We cry for those who never came home because we lived every day with the fear of getting that knock on the door.  We look back at a time when he or she (in my case, my son), proudly took the oath to serve and did just that.  I remember a little boy who would say “I love you tough noodles, Mom, cause that's the most you can love anybody”.  I remember a teenager being protective of his younger brother and sister.  I remember a young man who told me the morning of 9/11 that he had to leave for basic because it was more important than ever: for his country, his siblings and me. 

They didn't abandon us in our time of need in this country.  They don't need to be abandoned or forgotten now.  They just need to be accepted so that they can seek help earlier and not feel ostracized for doing so. 

If you haven't lost a loved one or had one come home different, I am truly happy for you.  I honestly would not wish the roller coaster life those of us living with a TBI and/or PTSD affected loved one have and will continue to have.  All I ask is that you take the time to understand what we go through without judging us or them.

If you are here and are experiencing life with a loved one who has a TBI or PTSD and you feel alone, get in touch with us so we can help you get in touch with someone in your area. 

To me, it's not Happy Memorial Day.  Have a blessed Memorial Day and give your family a hug today.  

Submitted by Monica Newton

Sunday, May 27, 2012

Higher Ground


I had the opportunity to host a radio show last week with Bert Gillette, Veterans Outreach Coordinator from Higher Ground, as my special guest.  Higher Ground offered my husband his first opportunity to try a new adventure following his injury.  Sean traveled with my step-father to Sun Valley, Idaho for a week of fly fishing and male bonding surrounded by breathtaking mountain views.  Somewhere in those sparkling waters Sean found peace within himself and learned that he could be independent, confident, and enjoy his life.  He has since gone on to pursue other athletic camps and activities and encourages peers to get involved and participate in their lives again.  


 Higher Ground hosts week-long retreats for couples or singles, and each veteran may invite a spouse, significant other, close friend, or family member to attend as a support person.  Costs for both participants are fully covered by Higher Ground. Veterans have time to bond over their struggles, frustrations, and successes while significant others have the opportunity to share their challenges as caregivers. 

Camps offered include: 

Snow Sports (skiing, snowmobiling, snowboarding)
Water Sports (water skiing, wakeboarding, canoeing)
River Adventure (rafting, camping)
Fly Fishing


Each year more than 60 wounded veterans and their partners have the opportunity to learn physical skills, coping strategies, and confidence that will allow them to more fully integrate into their communities and interact with their families.   The camps at Higher Ground lead veterans to healing and confidence through sports and the great outdoors. 

Veterans are offered follow-up support for three years after they attend camp.  The staff at Higher Ground assists veterans with reintegration into their lives by providing ongoing support,
assistance, and resources.

Submitted by Melissa Johnson, FOV Volunteer Coordinator

Thursday, May 24, 2012

Compensation and Pension Exams... one of the reasons the system is broken (aka Our Hellish Day at the VA)

As I write this I'm sitting in our VA waiting on my husband who is in a *THREE* hour C&P (Compensation and Pension) exam with a doctor he's never met without a caregiver present.  This is my husband who many days can't leave the house because he simply can't deal with the chance of meeting unknown people. This is my husband that because of TBI often has a hard time maintaining focus for 5 minutes, much less three hours. This is my husband whom if you ask questions in a way that is too long or too convoluted, will give the wrong answer almost every time (not because he's lying, but because by that point he's not sure what to say and is just going to give you some answer). This is my husband that by the time they called him back for the exam was literally vibrating he was so anxious and had to go outside to get away (and then I had to figure out whether to go with him, or wait so that I could tell the doctor where he was when they called... may sound like a simple decision, but it's actually agonizing). This is also my husband who recently did the Gulf War Registry Exam (at our VA it's done by the C&P department even though it's not a compensation related exam) and despite the fact that I sent him back with detailed notes, a large portion of his registry info is now incorrect (and I now have to figure out how to get it redone) because he couldn't remember the info they asked for and the physician didn't read my notes (I guess he didn't believe me when I said he needed them).

We’ve had two weeks of complete hell getting to this day.  My husband seriously hates these exams (for all the reasons listed and because he always leaves feeling so agitated and edgy and it takes days to get settled down afterwards).  They’re sort of a form of torture in our household… granted I get why they’re necessary… but they cause an unbelievable amount of stress and fallout, both before and after. 

So, I just had to pause typing for a moment because the examiner came to get me so that I could go and get Shilo (my husband’s PTSD/TBI/mobility service dog) because she was getting in the way of the physical exam.  Now, let me explain that Shilo is extremely well trained and spends A LOT of time with us at the VA in various exams and appointments.  The only time she "gets in the way" is when she's working... when she's doing that part of her job that means she's "alerting" to a high level of stress and anxiety in my husband and is doing everything necessary to distract and "ground" him.  When I went in the room to get her (and asked if I sat in the room and never uttered a word, if I could sit there and help with Shilo so that my hubby didn't have to be without her, but was told "no"), my husband was so upset and so overwhelmed that he didn't even look up from his shoes to acknowledge that I was in the room.  He looked defeated. He looked lost. He looked like he was in pain... mentally and physically. Talk about a way to tear a wife's heart out... though I am not at all implying that was the intention of the doctor.

And here I sit... with a service dog who is trying to figure out why she was pulled away from her job at a time when she was needed... and trying to keep myself calm and convince myself not to cry. I so incredibly hate seeing him like that and worse still I hate seeing him like that when it's not necessary.

There is no national VA policy that says I am not allowed, as a full-time caregiver, to be in the exam room with my husband.  It's actually a decision made individually by each VA. There are some VA's that recognize and appreciate the significance of caregivers... the comfort we bring which results in a Veteran who is better able to focus and provide answers if possible... the insight we bring as the person most familiar and aware of the difficulties and challenges our Veteran's injuries cause on a daily basis... and even the cost-savings we offer since exams are then as accurate as possible, leaving it less likely for them to need to spend the time and cost redoing them (at a time when the VA claims process is incredibly backed up around the country and could use any and all means to increase efficiency).

I went yesterday (with my Caregiver Support Coordinator) to meet with the head Administrator over C&P's at our VA to find out what our actual policy is here. While I will say she was kind and helpful in brainstorming how to at least make sure that my husband doesn't have to go through his PTSD exam this way (we're going to use a new VA program that allows other physicians (physicians more familiar with and more familiar to our heroes) to complete exams for 70 conditions, including re-examinations of PTSD, but not initial PTSD exams), she also was unable to provide me with a copy of the written policy for our VA (she said she'd have to find it) and explained to me that if caregivers were allowed in exams (Note: Those caring for a veteran who has been legally declared incompetent through the courts can attend the exams, but they're the only exception.), it would give the examiner an unfair disadvantage to have a Veteran and caregiver present in the room so they would have to have more staff so the then it could be "even" (i.e., 2 people from the VA and 2 people on the "veterans" side). 

While I understand and appreciate that these exams are normally about money (while in our case this time it's because we've filed for Total and Permanent Status early for my husband, which won't actually change anything about the amount my husband is receiving each month, but still triggered a new round of all his previous exams) and there is a concern that some people are trying to "play" the system and get more compensation than they're entitled to, I disagree greatly with that stance. My argument is that having a caregiver present doesn't make any more risk of that then if the Veteran-only is present.  There is always a risk that someone is going to lie or embellish, though for the most part I find people UNDER-endorse their symptoms, especially those that are related to mental and neurological conditions, because they simply don't know how to put into words everything that they're experiencing.  However, by having caregivers present, there is a strong probability of coming away with a more accurate exam... one that is most fair to the Veteran and most completely reflects what the Veteran is facing as a result of his or her service to our country.  AND the C&P process would also be much less stressful and anxiety filled for those heroes.

Instead, it seems in some places, at some VA’s, we (those who spend our days and nights loving and caring for injured warriors) are viewed as adversaries… someone who is trying to “trick” the system, someone who is trying to give their hero an unfair advantage, someone who (despite the thousands of hours we’ve spent by the side of our heroes) has an opinion and insight that is not valuable enough to include in trying to get a full picture of a Veteran’s injuries.

So, here I sit.  Hoping that the hours I spent filling out the form the VA sent for these exams and adding additional notes for the doctor... combined with the 60 seconds I had to try to explain to her to please keep her questions brief, clear, and concise to minimize my husband's confusion and anxiety... is enough.

Fast forward... we are now 2 hours and 15 minutes in to the exam, and she (the doctor) comes out and calls my name so that I can take Shilo to my husband. She then says that her portion of the exam is over and that now he needs to go to X-ray, but that I am welcome to go with him to wait (thank GOD!). Shilo goes into full work mode, trying to get him calmed down and focused, while we wait. We are finally done with this exam 2 hours and 45 minutes after it started. My dear hero keeps commenting about the “blankety, blank, blank” scales (pain scales) that the doctor kept trying to get him to use to rate his pain levels.  He says he just didn’t understand and kept trying to explain that he didn’t know what to say.  He says the doctor finally found another sheet to try to make it easier for him to figure out but he’s still not sure if he did it right.  And (of course) that he kept having to ask her to repeat things and a few times he finally just told her “something”.  Lovely.  So hope it’s actually accurate.  Of course, now I’m worried that the exam report will be wrong… not because the doctor recorded anything wrong, but because the hubby provided incorrect responses because he was overwhelmed and needed to just get done.  It wouldn’t be the first time that’s happened.  (And it’s REALLLLLY hard to “fix” once the wrong answers are in black and white.)  Bleh.  Just bleh.

My husband looks like crap, I look like crap, and we have 2 hours to kill before the next one starts (an audiology C&P... at least that one is pretty straightforward... "Do you have ringing in your ears... Press this button if you hear a beep.")

With two hours to fill (and my hubby threatening to mutiny) I pull out a tried and true caregiver card.. "tell me anywhere I can take you to get something to eat and we will go." Of course, in our world that means fast food, drive thru, eat-in-the-car is the only option (got to love that PTSD), but at least it's a distraction. Of course he names somewhere that I don't know where it is and he "thinks" he knows (some of the most dangerous words in TBI world are "I think I know..." because then it means on the caregiver side you have two options. First, follow the "I think" directions with the very real probability of being on a wild goose chase.  Or, not following those directions and seeming like you think your Veteran doesn't know what they're saying. Bleh.) So for a while, I follow the directions and we're getting more and more lost (a lovely PTSD trigger) and my headache is turning into full on Caregiver "crazy mode"... head pounding, stomach churning, trying to use my best nurse-calming-soothe-the-beast voice.  Fortunately, I have fellow caregivers on speed dial... wonderful people who live here in PTSD/TBI world with me and whom I can call and make strange requests to (i.e., I need to find a Krystal's ASAP!!!)... friends who don't ask questions, can hear that "nurse" voice, and just help (a LIFESAVER in our world).

And now we're back at the VA waiting.  Lunch has been found and we are holed up our favorite quiet corner of this facility... trying to calmly wait out the time and let the storm of the events of the morning caused recede.

We finally head to the waiting area for the Audiology C&P.  When we get there they hand us another form to fill out with the dreaded SCALES at the top that my husband is already pissed about.  We’re sitting in a tiny waiting area with 3 or 4 other Veterans and caregivers.  As soon as I start going down the form to help fill it out, and I get to one of the scales (i.e., How loud is the ringing in your ears?”), he goes off.  “No more f---ing scales, I’m not doing any more scales, I don’t know how to answer that all I know is it’s f---ing loud in my head… it’s f---ing loud.” “OOOOOkay,” I think, as everyone in the waiting area stares and the receptionist behind the desk leans out to see what the commotion is, “we’re going to say ‘f---ing loud’ is an eight.”

Before I have a chance to complete the form, the audiology doctor comes to call the husband back.  I hurry over, try to explain that if he’s going to need dates for the information on the back he’ll need to ask me, and try to calmly smile at the man I’m married to… the one who has already had a much too long, much too stressful day.

While I’m waiting, there’s an older couple (in their eighties I would guess) sitting in the waiting room, too. She’s doing the same thing I was just doing… going down the same form and paraphrasing the questions so they’re simpler and more straightforward for her husband.  When she gets to some questions about “how well can you hear at parties,” and “does your hearing loss impact your ability to visit friends,” both times he says something to the effect of “How would I know, I don’t go to parties, why would I go to a party?”, “I never visit friends. What are they talking about?”.  I think to myself that I wonder if he’s a World War II or Korean War Veteran… and I wonder from those responses, a few others, and the “everything is alright” tone his wife is using (one I recognize well… after all I was just using it), if he, too, has PTSD.  There’s even a question about if his hearing loss contributes to or makes him feel more agitated… at that question his wife sort of does a semi-sarcastic giggle and says, “Well, I can answer that one.” (Wow, she sounds like me.)  I wonder if I’m looking at a picture of my husband and I in 50 something years… some of this sounds sooooo familiar.  And, I had also noticed that they were the one couple in the waiting room that didn’t really glare or give any “looks” after the hubby’s tirade.  “Yep,” I think, “maybe she’s a fellow PTSD wife.” (and I snap a quick picture… only of their feet for privacy purposes… to remember my potential “sister” PTSD wife.)

Just as I’m doing the debate about whether or not to strike up a conversation (and whether or not it would just add to her husband’s obvious irritation), my own Veteran is back.  Thank goodness at least this C&P was only 20 minutes. When I ask how the exam went, he says, “The pauses between the beeps were too long, so I kept pressing the button.”  To which I respond, “Honey, you were only supposed to press the button if you heard a beep… if you didn’t hear the beep, it’s because your hearing isn’t good enough to hear that sound.” Then, he replies again, “But the pauses were too long, I had to push the button.”  We go through the cycle one more time… and then I give up.  Pointless to argue, apparently somewhere in TBI land this stance makes sense to him, and I’m not going to do anything other than upset him by continuing to push it.  Lovely.  We’ll just have to wait and see if the testing now shows he has miraculously perfect hearing now (despite needing hearing aids on a daily basis) because he was concerned about filling the pauses.  Ugh.  Did I mention it’s a REALLY GOOD IDEA for a caregiver to be in the exam room????

I can’t help but remember we’ve still got the TBI exam to go in a few weeks… the exam I find it MOST ridiculous that caregivers can’t attend.  “Hello, hero with brain injury that causes memory loss, confusion, agitation, and general monumental processing difficulties… we don’t think you need someone here to help you… we’re just going to sit and ask you a bunch of questions that you don’t know how to answer, can’t remember how to answer, and in general just are too totally overwhelmed to answer. BUT, we’re not going to allow the person who lives with you every day and could help us get the right answers in the room to help.  Nope.  That doesn’t make sense.  Why would we do that?” Bleh.

As I’ve had the opportunity to meet with, speak in front of, and work with people at different levels of leadership around the country within the VA and in agencies that impact the VA, I’ve continually brought up this issue.  So far, I haven’t been able to find anyone to listen.  However, I am a “typical” stubborn Veteran’s wife and won’t be giving up any time soon.  It’s a portion of the C&P process that is broken, that wastes time, that weights the system (albeit I believe unintentionally) against Veteran’s with mental and neurological issues, and it does not mesh with the VA’s advancements toward more patient-centric and family-inclusive care (the type of care that is best for those who have laid down their bodies and minds for our country).

So, there’s our story… a day in the throws of the VA Compensation and Pension process.  What’s your experience?


((HUGS)) to all,
Brannan

Brannan Vines
Proud wife of an OIF Veteran
Founder of FamilyOfaVet.com - an organization dedicated to helping heroes and their loved ones survive and thrive after combat with real world info about PTSD, TBI, and Life After Combat!

*NOTE: for more information about having a physician familiar with your Veteran complete a C&P exam (instead of going through the traditional C&P examiners), including a list of the 70 conditions this applies to, visit: http://benefits.va.gov/disabilityexams/*

Monday, May 14, 2012

Monday Momisms: The Pros and Cons of Loving a Combat Veteran







In 2001, my son wanted to join the Army.  He even tried to get me to sign the papers when he was seventeen, because he would not be able to sign on his own until his birthday at the end of June.  I thought about it, I even went to the recruiter’s office and had the pen in my hand.  Then for some reason, I looked at the recruiter and asked “What if there’s a war?”  The recruiter assured me there was no reason to believe that.  I could see his point.  I had been an Air Force wife and although Desert Storm had occurred, it really hadn’t affected us personally.  Still, I looked at my son and said “I’m sorry.  I just can’t.  If something happened to you because I signed this, I would never forgive myself.” 


This was in May.  On his 18th birthday weeks later, he enlisted and was soon notified he would be going to basic October 1.  He had dreams of becoming either a history teacher or a police officer.  The morning of 9/11, however, changed everything, for the country, for our family, for him. 

My son did not hesitate.  He insisted being in the Army was more important than ever in order to defend his country, his younger siblings and me, the luckiest mom in the world to have these three young people in my life.  What he was about to experience, what we all were, was far different from being the spouse and children of an Air Force sergeant.  I was about to become the mom of a combat soldier. 

One of the absolute greatest “pros” of this is most definitely pride.  One of the biggest “cons” is fear.  Even after combat, the pros are still there.  However, unfortunately, so are the cons. 

Think about this: if a wonderful young man went to war who had never once had so much as a traffic ticket, was so proud of his hometown he brought comrades home some weekends with him to see it and meet the family he spoke of with love and pride, had half a dozen girls chasing him but was ethical enough to refuse to have anything to do with the ones his friends and cousins liked except as a friend, was protective and loving over his mom, little sister and younger brother and had dreams of helping others, that says something, right? 

Okay, now think about this: when someone returns from combat acting completely different, pacing constantly, having nightmares, mood swings, withdrawn and does things you never would have believed he would have, it tells you as loud as possible: hello, something isn’t right here.

To this day, the pros of loving my combat veteran son do outweigh the cons, even if they are fewer in number.  Take a balancing scale: you put the cons in and it immediately hits close to the ground.  You put one thing, the only thing sometimes that you have left on the pro side, love, on the other scale and it will bring that balance back and then some.

Every day I live a life of pros and cons, wondering what the day will bring.  The only constant in my life regarding my combat veteran son, is I still love him and I still have pride in the young man who never hesitated to defend his country.  I have lost pride in how he and his comrades are looked at and treated, ironically by some who never walked in his shoes yet knew him before combat.  When I balance that scale?  Definitely not a contest: I would take him over those who put him and other combat veterans down any day.

Monday, May 7, 2012

Monday Momisms: Mother's Day


Mother's Day is Sunday and I know that many of you are anticipating the time with your kids.  Some will get cards and drawings that will forever be treasured in scrapbooks or special drawers, perhaps even on walls and refrigerators.  Some may be without their children due to a painful loss.  Some may have a son or daughter in a war zone. 

Then there are those who are in a different situation like me.  While two are pursuing their dreams with college, I honestly don't know whether I will have any communication with my oldest.  It depends on what kind of day it is for him.  Things that seemed perfectly normal just a few years ago are now rare moments in time.  Family holidays, Super Bowl parties with their favorite appetizer, family movie and game nights: these are almost as rare as the Super Moon we experienced a couple of nights ago. 

PTSD, brain injuries, epilepsy and memory loss have taken those every day natural times and made them treasured memories, not only because I love my kids but because one of them will never be the same again and it is not his fault. 

That is what I cling to: my son's personality changes are NOT his fault.  They are his wounds from serving in combat, defending his country, protecting his loved ones.  Seriously, I deal with people telling me I cut him too much slack.  Really?  Well, maybe so.  But if had been someone with problems as a juvenile, someone who always had a bad temper or didn't care about being around his family or kept himself locked up in a room, I could see their point.  But he wasn't.  He was a young man so proud of his hometown that he brought his Army buddies home whenever he could.  They would tell me about how he would go on about being from the greatest place in the world.  When Hurricane Katrina hit and I thought of going with a church to help, my son called and told me not to because his unit was going to be helping and he didn't want to have to worry about me being there with some of the “not-so-good” stuff going on with people taking advantage of a disaster and hurting others. 

Mother's Day is nothing like what it used to be.  If I get a moment with him, I will definitely be thanking God.  If I don't, I will probably go through  old pictures, old letters, old memories and still be thankful to God. 

If you are about to experience your first or yet another Mother's Day in a world filled with PTSD, please remember that you are not alone.  There are other moms out there who understand what you are going through.  If you need help finding a support group, email me at monica_newton_writer@yahoo.com.  Or reach out to Family of a Vet here and someone will be happy to assist you in getting the right resources.  We care because we understand.  We understand because we have been through and live with a lot of the same things you do. 

Also, remember this: we as moms are a lot stronger than we realize.  I didn't know how strong I could be until I became my son's combat buddy here at home, a name his own commander gave to me.  We are your combat buddies, also.  Let's smile and enjoy our Mother's Day and not let the “enemy” take it over.  We can spend it with our children if we are able to or we can take comfort in the wonderful memories of how it once was.  Either way, we are the lucky ones for having those brave young men and women in our lives.  No one can take that away from us, not even PTSD. 

Happy Mother's Day.  :) 

Monica Newton