Thursday, November 13, 2014

New Joy

Its been a few weeks since our unfortunate incident. While I had typed a letter to the West TExas VA Health Care System in hopes the patient advocate or someone could lend us some help in our plea to find a new doctor for Chris and hopefully a better treatment option. Chris made copies of my letter I wrote and dispersed them to a few folks he knew hoping someone or something could help. We got our help but never in a way I had ever imagined.
Tonight at the local VFW there was a VA town hall meeting. Just as I advocate for H I need to help advocate for Chris. I know he is a big boy with his own words but sometimes he struggles to find them, or use them the right way. However tonight he stood up and spoke. He had his head held up looked the board straight in the eyes and spoke of his issues. I was proud. While yes I now tactics are in place by docs to ensure forthcoming and honesty and responsibility, there also comes a fine line of what is just needed and what is to much. That Friday was just too much. Enough was enough from the doctor who could never remember him, would eat his lunch while telemeeting with him, belittle him and not hold much faith in him.  The whole staff agreed it was too much also.
We spoke with a patient advocate who wants to read my letter, she wants to ensure that all of Chris's doctor visits will be handled face to face with reimbursement for travel since telemed is not a suitable treatment option, she wants to help fix the transcript that was filled with more opinion than fact from that day and we will be filling out a request to get that done. Just an hour meeting another hour of talking to two different people and big changes were happening. On a normal day that just doesn't happen. Not with the VA at least.
I met a woman, and through a strange story that goes with it, that lost her husband just a few months ago to PTSD. She stood tonight and delivered the most memorable story that no one in that room will soon forget. She baited those bigwigs, she had them all ready to jump through hoops to help and of course when the director offered to help her she dropped the ball in the calmest most composed manner of anyone I had ever met.... She said well he killed him self back in September. Jaws from those bigwigs hit the floor! That along with everyone sitting. Even the cameraman in the back just sort of look dumbfounded. However the presentation really made it VERY clear we have some big issues that need to be addressed. I really think they took that one to heart.
At the end we were asked to speak with the patient advocate and the director. We spent about half an hour with the patient advocate. We told her that this was our formal complaint on his telemed doctor. We were then informed no more telemed face to face only and travel pay would be reimbursed she would just have to talk to a few folks to get that hopefully in place, she gave us info to have his files fixed from the over stated opinions VS facts that were placed in his file from that day. Once meeting with the director I knew that he was really wanting to help. I come off strong but not too strong but I wanted him to know that this system is seriously flawed. He said in rural areas its hard to get the best care we are level III Dallas however is level I. He basically laid it out that he would help us get the best of the best out here but that Dallas is where its at. Ok great you say more trips to Dallas. No here is the screwed up part his care would have to come from New Mexico. Yep see screwed up. Dallas is its own sort of region and West Texas area has 33 counties covered and for most treatment folks are sent to Albuquerque. What disabled vet wants to spend 10 hours in a car to be reimbursed AFTER their trip?! Ya no one! However..... if Chris showed up in Dallas for care they can't turn him away. However it was hinted at it might be better suited if we aimed to go to Dallas at some point.
Throughout the conversation the director took genuine concern over both Chris and I. He said him and his medical team would sit down and find the best treatment plan for Chris and that if he was wanting to do inpatient they would help find a source for him. He then stated all appointments from here on out would be face to face and that telemed was never an option. He also stated he would be paid for those trips to Big Springs. He threw something into the conversation that just about made me cry. Respite. He is going to look into respite care. Between H and Chris there are no breaks, not with work, the kids and everything else. He wants to ensure we get some respite! He also said that the caregiver program would be something he would look into but not as familiar with yet since he is still new but he would get us answers.
He wanted Chris to embrace his new normal. We know all about new normal with our diagnosis of Autism with H. However this new normal means letting go of some stuff for Chris. The director asked him what brings him joy. Chris responses of shooting guns made his eyes go wide. He told him that might not need to be his joy especially with the issues lately. We mentioned airsoft and he sort of turned his nose up to it but I think in the end he will change his mind. He really wants Chris to let go of the past and take on what is now. Chris mentioned getting help before January when he leaves for school to train dogs. Again the response from the director was that this isn't an overnight change it will take time. I want to support Chris so I told him that maybe in April or next Aug would be better suited because of all of this. His care needs to come before his wants. I think he is seeing that.
This system, these people put in place to help our wounded our brave men and women who fought so hard with all their courage are now being silenced. Made to feel shame and worthless for the wounds they bare especially those no one can see. I know that the VA has been in some very poor light and that they feed us BS and lies. Tonight though maybe its the naive me, but maybe its not, I saw a man with real concern in his eyes reaching out to us and wanting to help my husband before he became another statistic. Another one of those 22 a day that end their life because of PTSD. So I have put my faith and trust in this man in hopes that in the next week or so we have some real answers and some real positive changes. I don't put all my eggs in one basket but tonight given the circumstances and how I was feeling I did.
I want Chris to find his new joy. I want him to know how good things can be. I eventually want to help others around me find their new joy. PTSD doesn't just change the patient it changes their family. It changes their joy. I want to find our new joy so that soon I can show others that it can be done.