Saturday, October 31, 2015

It's Just Different

I come across so many active duty caregivers who always ask, "Does it get better?" when referring to this journey. I don't like being a Debbie Downer or Negative Nancy, but I also cannot lie.....

It doesn't get better. It just gets different.

We were so spoiled at Walter Reed. One thing is for sure they get a F- for assimilation and preparation for the next steps of this journey. I feel like they set us all up for failure with their lack of preparation for what's next. I wish we would have had a veteran and his wife come and talk to us about the next steps. They could have warned us about all the dates and timelines we needed to be aware of. I wish someone would have given us real time data on the red tape procedures, who/what you need to look for, and who can truly be your advocate. I wish they would have talked to us about all sorts of things. Instead we just dropped off of the Army assemble line left to walk and figure it all out. I am not saying they should be holding our hands through all of this. What I am saying is Walter Reed sets you up for failure.

While you are there you have a big wide world of assistance at your finger tips. Here on the other side you have to make a gazillion phone calls to find one lead to find assistance. Here are two examples....

Need an adjustment to your prosthetic legs.
Walter Reed: Roll on in to see the guys. They do it right then and there.
VA: Call your NCM to tell your PCM. PCM tells the prosthetic department. When you finally get the prosthetic adviser on the phone, they remind you that they cannot work on your legs (which you already knew, but you have to go through them anyway) because they are too technologically advanced. They then put in a referral for an outside provider. Once that finally goes through, you find someone and begin treatment. Make sure you know the expiration on your permission form to be out in the civilian world. If that expires while you are being treated at the civilian office you then have to wait for another referral to be put in and authorized.

Broken wheelchair.
Walter Reed: Call Pete on his personal cell and he'll meet you asap.
VA: Call NCM to tell them to tell the PCM. They tell another department (I can't remember the name, because it's something other than wheelchair department). Then that department eventually calls you and says that the break sounds almost impossible to have occurred they need proof. You take a picture and send it in. Then they finally acknowledge it and then whoops, they can't fix the chair and it has to be referred out. This time they don't tell you the name of the provider so you just wait in a broken wheelchair for someone to randomly call to help you. They do and then it turns out they have to order parts. So you wait and thank your wife for keeping the previous wheelchair so you have something to use while you wait for the repairs.

These are just two examples, but it gives you an idea of how things go through the VA. With that said, we do love our VA. We are happy with our PCM, NCM and several other personnel there. However Chaz has a banker's box full of things wrong with him and our VA can only see him for audiology, standard colds or allergies and things like that. In regards to every other department, they do not have the experience or expertise to assist him. So he has to be fee based out and that involved referrals and it is freaking exhausting to keep up with all of it and it is on you to keep track. 

At Walter Reed, the professionals there just magically make everything work for you. They do so much work behind the scenes. You realize Walter Reed is simply a magically place, like a medical Disney World, once you are in the suck of civilian life and the VA.

I tell caregivers I don't feel like it gets better on the other side. I feel that your freedom from the Army's painful bureaucracy is short lived when you realize you are faced with a bigger bureaucratic nightmare. I feel that things are as good as they will get for us. I feel that the beginning of this journey at Walter Reed fighting for this or that simply prepares you to keep fighting. The fighting doesn't stop when the war comes home to you. Instead you have different fronts to fight in a never ending war of healing the wounded.

Chaz's health is the best it can be. We acknowledge that and are already preparing for the deterioration that will eventually come. People do not like to hear that word deterioration. They seem to think that we feel depressed about our life, when it is actually the opposite. We are not depressed at all. We have accepted our reality. We are different and we are perfectly fine with that.  The fight for us will never end. We acknowledge and accept it will not get better for us, it will only be different.

Friday, October 23, 2015

A Little Update's been two months since I have written anything. Someone had to point that out to me when asking if we are ok. Yes we are perfectly fine, just busier than ever before.

I just said to a friend the other day that I needed to make time for writing. I really have missed it. However life has gotten in our way again and again and again. Let me give a little breakdown......
  • We are still trying to get our home finished. Our builders abandoned us (wish I was making that up) and we still have all sorts of little things that need to be finished. Slowly but surely we are getting them knocked out. We are at about 95% completion. We'll get there. I just need to "you tube" a few things and get the stuff knocked out. It's finding the time....
  • Chaz was rear-ended by a distracted driver. Getting his van fixed involves a lot of extra planning and effort. The guy did say he hurt his ankle to Chaz and was taken away in an ambulance. So yeah, there's that....
  • The girls returned to public school. So far, so good there. Love their school!!
  • Deryn made the cheerleading team at school. 
  • Ryann joined the local community basketball organization. 
  • Our dear friends home burnt down and we moved them in with us.
  • I still work A LOT!!! 
  • We spent a week at Gulf Shores for the girls' Fall Break.
  • We are still unpacking and organizing our home. 
  • Chaz's wheelchair broke and we are trying to get the VA to fix it. 
  • One of his legs broke. Just got those back yesterday.  
That's the short list. Things are crazy around here, but I have a lot of blogs brewing!! Hopefully I will find the time soon to start churning them out!! ;)