Before I begin: I would like to state that many of the providers and people we deal with on a regular basis at the VA have been great. There are some very amazing ladies over at Caregiver Support and they all pour their heart and soul into the program and the caregivers they strive to support. In no way, shape, or form, is this post an attack on those individuals!
I have really been thinking about writing this post for a couple of days now. There are so many different thoughts going through my mind and I can feel the anxiety building up inside myself just thinking about hitting the Publish-button. I am worried about repercussions, such as being kicked out of the Caregiver program or the VA cutting my husband’s disability, yet again. It may sound like total paranoia to some, but for us, this constant fear of saying or doing something wrong has been there for the last 9 years now. It has been this vicious cycle of not doing enough, doing too much and fearing that we may do far too much for that one person in the system. It is just as frightening as it is frustrating at times. But, I’m tired. I’m just so tired!
A couple of weeks ago, I was able to connect with some great people at a Caregiver Workshop that was technically not endorsed by the VA; but we were able to connect with people from the VA Caregiver Support Team. I happened to mention that I started a Blog, because I needed something to provide me with an outlet. Being my husband’s caregiver already makes me prone to isolation, but being our son’s caregiver and advocate as well just amplifies that isolation. Hence, I decided to start this Blog. In our conversations, one of the ladies had mentioned that the new Caregiver newsletter is set to have a section for caregivers to share things that are not VA-endorsed materials; such as thoughts, articles, quotes, etc. They mentioned that I could possibly add my Blog to that section, but that they had to get some information on the specific terms of this section. So basically, they had to make sure I was able to give them the link to my Blog for other caregivers to see it in the newsletter.
I thought, OK, that doesn’t seem too bad. I kind of figured they would include things like: NO pornography, NO illegal shit, NO violence, etc.
Well, weeks go by and I finally get an email about me adding my Blog to the newsletter (in a section that is technically NOT endorsed by the VA, mind you!). What does it say?
In a nutshell:
You can give us your Blog, but it can’t have any negative comments or complaints against the VA.
Yes, you read that right! A section in a newsletter that is NOT endorsed by the VA and is supposed to be intended for open communication between caregivers for things the VA cannot endorse, requires me to not say anything negative about the VA on MY Blog!
After sitting back for a second and re-reading that one sentence a few times, I repeated it to myself out loud. Then I thought about it some more and the anxiety, anger and frustration started to boil within me. I’m not sure why I got so frazzled at that moment by that one sentence, but I did. Now my thoughts start to race:
I am paying for the hosting of this Blog!
I am paying for the domain.
I am investing all this time and energy into this, not the VA.
I created this Blog, because one of the most frustrating things about my experience as a Caregiver is the very same entity that is now trying to tell me what I can and cannot write on my Blog.
Now, some may argue that since I am on the Caregiver program and my husband receives disability, the VA is technically paying for the Blog; and therefore, they can tell me how to run it.
I am on the Caregiver program, because my husband is disabled enough for me to be on it; until they decide that we do not qualify anymore based on his disabilities. He is disabled, because he chose to serve his country. The very same country that has this thing called a Constitution and Bill of Rights. Yes, that piece of paper that gives me the right to Freedom of Speech. My husband fought for his country, for us to retain our rights and freedoms, and I have the privilege of being married to such a wonderful man. His service rendered him disabled enough for him to receive disability and other benefits; which were promised to him when he signed his name on that dotted line before he was legally allowed to drink a damn beer. And we’ve done nothing but fight for those benefits with this entity called the VA for the last 9 years.
Yet, they want to tell me that I cannot mention anything negative against them?
That, my friends, is the VA attempting to limit my Free Speech!
The worst part about this is that I am not upset with many of the Doctors, Social Workers, and (certain) nurses! Many of them are wonderful and excel at their jobs and have done some amazing things for my husband. I am frustrated, angry and at times quite frankly disgusted with the people in the background. The people who don’t seem to really have any contact with the Veterans and their families, yet seem to hold all the power and strings.
So, my dear readers, I am happy to tell you that I will not abide by the craziness and will continue to utilize this amazing right called FREEDOM OF SPEECH!
Disclosure: Everything I share is solely based on my personal experience and is for informational purposes only. This post contains affiliate links. For more details please view my disclosure policy.