Our Story: Need Communication and Understanding

I am the wife of an OIF/OEF Army Veteran. We have had numerous experiences within our VA system, some good and others not so much. We regularly go to the VA Outpatient Center in Jacksonville, FL but on occasion have to go down to the VA Hospital in Gainesville, FL.  I suppose I should begin with the negatives and get them out of the way.

We have had numerous issues with different doctors in both locations. My husband suffers from PTSD, mTBI, migraines and chronic back pain that causes spasms throughout his body and requires him to use a cane. In the five years we have been using the Jacksonville VA we have had around seven or eight Primary doctors and the changes never come with any warning. When you have a patient with PTSD, sudden change with no advance notice is never a good thing. It causes paranoia, discomfort, and agitation. Not to mention it then takes a longer period of time to build trust with the veteran, established trust necessary to develop and open and outright relationship. 

My husband was hospitalized at a local non-VA hospital a few years ago for extreme pain in his back and legs. He experienced pain he described as feeling like he was being electrocuted. This pain caused him to have full body spasms (looked like he was seizing) and then he would pass out. He had been experiencing these issues for quite some time, and while the VA was aware of it, nothing was done to find the cause. We spent almost a week at the hospital where they ran numerous tests, including a spinal tap, and informed us that he had a larger than normal amount of fluid on his brain. They were concerned that he may have the beginnings of hydrocephalus and he needed to be closely monitored by neurology. We then learned that the VA wanted him to be transferred to the Gainesville VA hospital or the VA would not pay for his care.  Since he had no other health coverage we didn't have a choice. We weren't too upset at the time because we understood that a medical body would rather use its own facility and staff. 

However, my husband was there less than 24 hours before I received a call that he was being released and I could pick him up at 9 pm. The VA doctors had done an MRI and the neurologist tapped his leg with a tuning fork. The doctors decided it was not hydrocephalus and sent him home. When we spoke to the primary physician about being seen by neurology regularly, as recommended by the civilian hospital, we were told it was unnecessary as neurology had already seen him that year. 

These events occurred in Oct/Nov 2010 and my husband has not been examined by a neurologist since. It is now Oct 2013. Our requests for an appointment are never granted.

We also have had issues with the Caregiver Program. I have cared for my husband since we were married in 2008. I am with him 24/7, wherever he is, I am. As a result of his PTSD he has very poor short term memory. Most days he couldn't tell you at dinner time what he ate for breakfast. Many doctors ask him how often his pain occurs or recall the last time he has passed out (still unsure what causes this as doctors won't investigate it) and he is incorrect with his answer. He tells the doctors that it hasn't occurred in a couple weeks when he experienced three episodes that week alone. When I try to correct the response so the doctor has accurate information I am often told not to answer for him or that they can only use information from the patient. It is unfair to expect someone with memory impairment to recall those details. My husband is fully aware of what happens around him but he has poor time judgment. How can they effectively address his problems when they knowingly use the wrong information?

There are numerous issues regarding his pain medications. My husband has a prescription for narcotic pain medication that he is told to take as he needs it and the prescription is written to take twice daily as needed for pain. He has a relatively high pain tolerance and will take his pain pills only when he absolutely can't handle his pain as he fears becoming dependent upon narcotics. Most doctors would prefer you take them this way but when the VA drug test he takes regularly did not show his pain medication in his system his primary doctor threatened to take his benefits away since, in his opinion, my husband was not as bad off as he claimed. I could not believe it when the doctor went on to tell my husband he needs to take these pills twice a day, regardless of whether he is in pain or not, or he will lose his benefits. We requested pain management from this same doctor and were informed that narcotics ARE his pain management. When my husband complained months later that the pills were no longer as effective (after following doctor’s orders and taking twice daily) he was treated as though he was fishing for more pills instead of legitimately needing a higher strength. If you expect someone to take a narcotic on a regular basis there will come a time when that person's tolerance increases resulting in a need to increase; it does not make that person a recreational user.

Another issue with pain medication is when we receive the pills through the mail the counts are always short. I immediately open the bottles when they arrive and count for accuracy.  EVERY month the bottles range from 3 to 8 pills short of the prescribed number. We have notified the pharmacy and the response is a shortage is not possible because the pills are counted out by a machine--there is nothing that can be done. 

Our biggest problem with our VA is communication about appointments. We do not always receive notifications about upcoming appointments. I cannot count the number of times that we have received a letter alerting us that we missed an appointment on the same day I receive the letter informing us about that same appointment.

Another scheduling issue is when we have to cancel appointments. There are mornings that my husband is not in a good place. He is either passing out, sick, highly agitated, or in too much pain to move. On these days there is no way I can get him into the car and into the hospital and I have no choice but to cancel or request to reschedule an appointment. I do my best to make sure these appointments are canceled as early as possible. Without fail, within a few days we will receive a letter stating that since we missed the appointment and is considered a no show. His benefits have been threatened over this as well as my caregiver stipend.  The nurse who did my last home visit said it could be taken away since it is my job to make sure he attends appointments.  I ALWAYS call as soon as I THINK there might be an issue. I don't let him miss appointments simply because he doesn't feel like going or would rather be going somewhere else. When we cancel it is unavoidable. The threat of losing benefits because he couldn’t walk three feet, let alone the distance to the car and into the VA, does absolutely NOTHING to ease the stress in already extremely stressful lives. I don't feel it’s fair to threaten our income and medical care when the reasons are misunderstood. 

We have only had a couple positive experiences in our time with the VA and ALL of them are situations specific to the people we worked with rather than the institution. The most constant and positive experience we have ever had is with my husband’s first case manager. She has always been, and still is, amazing. Her name is Linda and she has always gone out of her way to help us, even after she moved to another team. My husband adores her and she truly CARES. She doesn't mind if we stop by after an appointment to discuss a problem and she does everything in her power to assist us or, if she can’t assist, tell us how to get what we need. She has truly been an amazing addition to our support team and on more than one occasion has helped keep my husband calm when his stress got the better of him due to an issue within the VA system.

The second person who has shown us that there are actually people in the VA system who care is my husband’s Federal Recovery Coordinator. He is awesome and always makes time when we have questions. He never leaves us in the dark for long when we are looking for answers, he cares enough to remember situations we are dealing with, and will do anything he can to assist us.

Lastly, and our BEST experience within the VA system, has been the PREP Program at the VA Hospital in Tampa, FL. The entire staff there was amazing and supportive. My husband spent three weeks in the program and during that time more was accomplished than our local VA had done in three years. The staff stayed fully involved in my husband's care and the doctors were great about calling me when I requested information and keeping me updated on his test results, their plan of action, and his progress. When I drove back to Tampa to pick him up, each of the doctors took the time to sit down with me personally and lay out everything they had done and discovered and gave me what their recommendations. As a caregiver, having someone within the VA system sit down and talk with me about the things I needed to know (even though my husband had already been told) showed me that they truly valued the caregiver's role in the health and continuing treatment of the Veteran.

To learn more about the State of Heroes and Families project, please visit our main site or visit any of the following direct project links -

Why This Started: www.familyofavet.com/state_of_veterans_families-why.html

The Statistics: www.familyofavet.com/state_of_veterans_families-statistics.html

Our Stories: www.familyofavet.com/state_of_veterans_families-stories.html

What We Hope For: www.familyofavet.com/state_of_veterans_families-hopes.html

FAQ About the Project: www.familyofavet.com/state_of_veterans_families-faq.html