Wednesday, April 26, 2017

What do you do when a VA Social Worker/Therapist gives you an ultimatum?

What do you do when your VA social worker, who is your therapist, gives you an ultimatum? This question is kind of rhetorical and kind of really a question. That is exactly what happened to my husband at his mental health appointment last week.

I am present at every single medical appointment for my husband. Both out of necessity and out of desire on his part. I am responsible for getting him ready to go, driving him there and helping him remember what needs to be discussed and/or addressed at the appointment. As far as his mental health appointments, he has told them that I am his safe place and he feels more comfortable talking, with me present. This is something that had began while he was still Active Duty in the Navy and proved to be much more effective, because he was actually able to address issues with me there, where he had previously struggled to have any kind of successful therapy without me. His memory issue are a big reason for that and the fact that due to past trauma in the Navy, he struggles with being alone with people, especially medical people. He desired to continue this as he transitioned into the VA system. This wasn't an issue... until it was... last week.

As we sat down in my husband's mental health appointment, the social worker immediately brought up wanting my husband to do the appointments without me there. My husband asked why and told him that there was nothing he couldn't talk about in front of me and that he was much more comfortable with me continuing to be there. The social worker told him that if he wanted me present that he would have to start seeing a different provider for couples therapy (let's be clear, this has NEVER been "couples therapy"), but he wouldn't continue to do therapy with him unless my husband was alone. He put my husband right on the spot and he had to make that decision right then. My husband doesn't handle that stuff very well and it makes him confused, anxious and upset. He was looking to me with his "help me" face, but I knew I would labeled as controlling if I didn't tell him that he needed to make that decision himself. He didn't want me to leave, but he didn't want to have to start over with a new social worker either. He felt so put on the spot and confused. I left the appointment against my better judgment. I wish I hadn't, because I feel like he almost felt a sense of betrayal.

While in the waiting room, I requested to speak to the department head. I explained how uncomfortable I was with the ultimatum my husband was given and how he was put on the spot. But most of all, I was very upset that the social worker who KNOWS the trauma he had experienced by a medical person, that left him incredibly uncomfortable being left alone with people, especially medical people, would put him in that position. I firmly believe this social worker no longer wanted me present because I had addressed a few instances with him, where he was not properly documenting my husband's sessions with him. It's a lot easier to deny wrong he has done or mistakes he has made when it's only the brain injured patient, and not the caregiver spouse to hold him accountable.

After a lengthy discussion with the department head, I was able to speak to my husband when he came out of the session. He held it together in the session, but fell to pieces once he came out. He told me he didn't ever want to go there again. He told me how uncomfortable he is there now and that he knows that they don't care about him and he's just a number... another disabled veteran being pushed through the system. That was a set-back that he absolutely did not need! He struggles badly with trust and now they just added to that.

I still haven't been able to get my husband to tell me what he wants to do and how he would like to proceed. I need to talk to the department head this week, so he knows how we want to move forward with his therapy. How do I make him keep going there, when he's so uncomfortable? We're still waiting for Medicare and Tricare to fix their crap, so outside of the VA is still not an option as of yet. I'm feeling really unsure of where to even begin to fix this.

Monday, April 17, 2017

What's your problem Veterans Affairs!?

I totally get that the VA is overwhelmed and understaffed etc. I understand that some things are out of their control. But there is SO MUCH that IS in their control and SO MUCH that they could be doing far better. The staff who are filled with hate and discontent far outweigh the good staff, that alone is a huge issue.

Why has the care that my husband has received at 2 of our local VA facilities been so horrible? Why have we had issues with multiple providers leaving his medical record with poorly written, incorrect and incomplete notes from visits? Why must every single thing be a fight?

Our latest adventure in VA hell has been trying to get a Seizure Helmet for my husband. Early February we were finally sent over to OT to have one ordered. After roughly 5 weeks I started asking questions about why it hadn't arrived. Of course, I couldn't get a hold of anyone from Prosthetics in Gainesville. I finally spoke to my husband's case manager and he started asking questions. He found out that the helmet was actually back ordered and no one bothered to tell me or do anything about it, despite it being "expedited". He was told that a new helmet was being ordered and expedited through another vendor. More time went by and I started asking questions again. My husband's Wounded Warrior Safe Harbor contact (They have done a lot of failing too. That's a story for another day) started making calls for me, because gain, I can't get a hold of anyone. She was told that the Helmet was ordered and would arrive to us the next day (April 12th).  So between the time that the case manager talked to them and the time the wounded warrior person talked to them, they had never actually ordered it. The helmet never showed up. Today, since my husband had an appointment at the Gainesville VA anyway, I decided that we should stop into prosthetics to ask what was going on. The guy came back after being gone a while to let us know that there is no record of the helmet being ordered... so it would be ordered today, sent overnight and hopefully get to us either tomorrow or Wednesday. WHAT THE HELL Y'ALL!? All i'm asking for here is a freaking seizure helmet. I just want to protect my husband's head a little bit when he's having seizures. He has hit his head so many times. He needs this. I'm not asking for something crazy here.

Just to shed more light on the incredibly poor attitude of the staff as a whole. While we waited for the guy helping us, the woman at the front desk as well as another man in the back, were talking about a patient. She said "He started trying to tell me his story, but honestly, I ignored him." and the other guy there was saying that the guy wasn't owed special shoes even though he thinks he was, bad mouthed him etc. and he tossed a paper pertaining to the guy carelessly, not caring where it fell. This is a problem! They need people to care about the patients!

I also told them that every single time I tried calling there I would get the after hours messaging system, regardless of what time of day it was and that I had left several messages with no return phone calls. They told me that the phones are messed up.... WHY are the phones messed up Gainesville, FL VA??? WHY aren't people getting calls back? Why is it so hard to get my husband a seizure helmet!?  I'm not asking for anything crazy.... just a seizure helmet. This is a case of people not doing their job! This is a situation that is 100% avoidable. This is just one of many issues we are having with the VA. It's shameful and unnecessary. 

I would also like to know why we must go into the ER when my husband needs to see his PCM for an appointment other than his yearly follow-up. Why can't an appointment be easily made when he needs to be seen? Why are we instructed that we need to go to the ER in order to have his PCM see him? That is ridiculous and takes away from real emergencies in the emergency department! The system needs a massive overhaul. 

Monday, March 27, 2017

Starting Over

Hello There! Long time no see, right!? Wow... it's been a while. There is so much to update y'all on, I don't even know where to start. But I'll try.

Those of you who followed me knew that my husband had become disabled due to the TBIs he had sustained. He has since been retired from the Navy, we have relocated to a tiny town in Florida, right over the Georgia line and we're now dealing with the absolute mess that is the VA.

Tony's conditions have slowly deteriorated a bit and I'm his full time caregiver.

The kids are still amazing and getting huge... and old. Our oldest son has a job!

I finally took control of my health a bit, after having the realization of how much my husband really needs me to take care of him. I've made huge leaps in my mindset, I've really strived to be more peaceful within. I do Yoga and Meditate. I have also, through strictly willpower, exercise and calorie counting alone, lost 76 lbs. (that's like... a whole 10 year old!).

We still have our old lady dogs, Emmie and Stormy (of course! they are family, they aren't going anywhere!) and now we have a 9 month old Chocolate Labrador named Harley, who we are training to be Tony's Service Dog (so far, so good).


I guess that update doesn't look like a lot... But it really is! I've missed writing a whole lot (publicly anyway, I've written a ton privately). I have so much to share about so many things. There has been so much good and bad. I really want to not only share the mundane things, but I also want to share things and issues that truly need attention, things that need to change, things that need to be brought to light.

I suppose this is really a quick "I'm back" kind of deal, I have a lot to tell you my friends. Stick around, I need you.



I will leave you all with a few pictures. Because, you know... that's what I do.




Christmas 2016