One of the most blissful feelings in the world is to lay your head down on a soft pillow at the end of the day. You stretch out between crisp, clean sheets and slowly your body relaxes as you drift off to a peaceful sleep. Suddenly, something awakens you. You frantically look around the room with only your eyes because you are afraid to move, you see a fist headed toward your face, you see legs kicking at the air, the sound of yelling starts to penetrate your brain-it only takes a split second for you to take all of this in and determine a course of action. Someone is not breaking in to your home, someone is not consciously attacking you-your Veteran is having a nightmare.  You speak softly and calmly in his ear if you can get close enough without being hurt, or from afar if the danger is too great. Slowly, your voice penetrates his nightmare and he starts to wake up, the flailing slows, the wild eyed look of fear gradually relaxes and soon your veteran is back in the present with you-for now.

Nightmares, hypervigilance, dependent behavior, irritability, anger, depression, physical aches and pains-these are a few shared symptoms of Post-Traumatic Stress Disorder (PTSD) and Traumatic Brain Injury (TBI). While medications and therapy may lessen the symptoms, it does not cure them.

Unfortunately, some medical professionals and support personnel do not understand learning to live with PTSD/TBI is a process that can take years of counseling sessions, medications and lifestyle adjustments-not just for the person with PTSD/TBI but for Caregivers, family members and friends. A person dealing with PTSD/TBI will not suddenly become “normal” because they have taken a pill or attended a counseling session. With patience and hard work, many with PTSD/TBI are able to live a life that appears calm to outsiders; some however, never win their battle. www.22kill.com

I recently witnessed first-hand how poorly trained VA personnel are when it comes to families dealing with PTSD/TBI at an informational meeting for Caregivers. A representative from the VA Caregiver program informed us about benefits available through the program. She explained if you are a Caregiver through the VA for a post-9/11 service connected Veteran you qualify for 30 days of Respite services a year; a great opportunity few Caregivers in our area use. I mentioned that some Caregivers are not able to take advantage of the program because Veteran’s with PTSD/TBI are not comfortable with being away from their Caregiver or having a stranger in their home. Her response? “If they would go to their appointments and take their medication they would not be “non-compliant” and Caregivers would be able to take advantage of respite care." ARE YOU KIDDING ME?!?!!? A veteran with PTSD/TBI who does not feel comfortable with someone he does not know providing care feels that way because he does not go to appointments? My husband goes to all of his VA appointments, he takes his medication-he is COMPLIANT and he still will not allow a stranger into our home to care for him. Is this the training the VA is giving to their employees? What about the Veterans waiting months for an appointment? What about the Veterans that have an appointment and the doctor does not show up? Are they non-compliant too? At my husband’s annual physical with the VA his psychologist was out of town so they cancelled his appointment and sent him to drivers training; is he non-compliant now?

 It is not acceptable to label a Veteran with PTSD/TBI as non-compliant because they are not responding with immediate results to standard treatment. This type of dismissive attitude is harmful not only to the Veteran, but also to the Veteran’s Family. [bctt tweet="It is not acceptable to label a Veteran with PTSD/TBI as non-compliant"]

As Caregivers we have adapted to our new life and we have learned ways to avoid triggers for our Veteran. We can often tell just by looking at them when they have had too much of a situation and need to leave. We understand that sometimes a day with increased pain may be a result of anxiety or fear and we try our best to comfort them. We know how close we can get when waking them from a terrifying nightmare without endangering ourselves-often we can calm them when no one else can. We also know when the situation is out of our control and there is not a thing we can do to ease the turmoil they are going through. They trust us, they depend on us and they know we will do whatever it takes to help them through the valley they are in. Can a stranger do that? As Caregivers of loved ones with a mental illness/injury we are a special and unique group of people with a special and unique set of needs.[bctt tweet="As Caregivers of loved ones with a mental illness/injury we are a special and unique group of people"]

According to the Veterans Affairs website at www.VA.gov there are 25 advisory committees and NOT ONE of them is specifically for the VA Caregiver program. So, we have a program that is paying a monthly stipend, has benefits such health insurance and respite care and there is not a committee dedicated to determining if the program is working?

Step up VA and give us a committee that is actually concerned with finding a way to make the program work for us. Use actual Caregivers that deal with the realities of PTSD/TBI on a daily basis, Caregivers that deal with prosthetic limbs, Caregivers that deal with spinal cord injuries. DO NOT give us people who think they understand what we are going through "because they have children". That statement from a VA employee was one of the most demeaning remarks I have heard in my 9 years as a Caregiver. Guess what? I have children too, it is NOT the same thing. My Veteran is a grown man who served his country honorably and as a result of that service is disabled-he deserves better than being labeled “Non-Compliant” and as his Caregiver, I deserve better too.