"Comments: This family has been under much stress related to PTSD, job, etc. However, they feel that they are just now getting appropriate services in place and are beginning to see a light at the end of the tunnel."
--Notes signed by social worker in June 2008
August 7, 2011 will be six years from the day Sean left in support of Operation Iraqi Freedom.
March 25, 2011 will mark the five year anniversary of Sean's injury.
On May 10th it will be four years since Sean returned home.
No wonder we're exhausted and feel like there is no end in sight. . . .
January brought numerous appointments, trips, and frustrations. Sean had 12 appointments this month, all but two were out of town. We don't have anything to complain about when it comes to the quality of care provided by the VA doctors Sean is currently seeing. Our case worker is outstanding. Staff is friendly and helpful. However, in the VA system only certain healthcare needs can be met by our local CBOC (Community Based Outpatient Clinic). For other needs, we are referred to the VAMC (VA Medical Center) in Sioux Falls.
The travel time is overwhelming (we have put 20,000 miles on since July!!), especially given winter driving conditions and that Sean can't drive. Over the years it has taken much time away from our children at home and created extra problems there as well. It has made it impossible for me to work.
Another issue we find is that many doctors do not work for the VA full time, so it makes coordinating appointments difficult. We may have an appointment on Monday with one provider, but cannot see another until Tuesday or Friday as he is only at the VA two days a week. Or, after rearranging an appointment to coincide with another trip, a nurse will call with a schedule change from the other doctor and we are back at square one. It's also frustrating that we drive six hours round trip for a 20 minute appointment as in the case of Sean's recheck following sinus surgery.
It seems our best case scenario would be outsourcing the routine things like sinus surgery and colonoscopy to local providers. For the VA, however, it is more cost-effective to have appointments in-house. We could go on our own to private providers and submit through insurance, but we have found that using civilian providers without access to Sean's full medical history creates a monster of its own.
We have been traveling weekly for his PTSD therapy since June. Sean works well with Dr. CV and I'm able to sit in on their sessions, so we will continue to travel as the benefits outweight the inconvenience. For February and March they are trying V-Tel (via television screens) so we will meet with her from Aberdeen instead of in Sioux Falls. It is extremely convenient, however, it lacks the more personal face-to-face feeling. She will be taking some time off in April and we will reevaluate at that time. We will continue to travel to see her if necessary because their working relationship is so important to his healing.
Sean has an OEF/OIF peer support group that meets monthly in Sioux Falls. He enjoys this group as it is a place where he feels he can contribute with advice for newly injured vets.
There is finally a psychiatrist traveling to Aberdeen who will see Sean on a monthly basis. Nine months have passed since the VA ended their contract with Dr. K and this is the first psychiatrist Sean has seen since. Scary considering the number of medications he takes that can only be prescribed by his psychiatrist. Sean and Dr. R seemed to bond right away, so while the VA is still looking for a permanent psychiatrist at the CBOC, Sean wants to continue to see Dr. R even if it means traveling to Sioux Falls or using V-Tel. I am willing to travel for these appointments as I believe finding someone Sean connects with is a key factor in his success.
In the last month we have visited the emergency room three times for stabbing eye pain and once because he fell and hit his head on the floor.
Sean received a CPAP (Continuous Positive Airway Pressure) machine for his sleep apnea following his sleep studies. The first two or three nights I don't think either of us got any sleep as he was constantly adjusting and readjusting the machine and facial mask. I think the snoring would have been more restful (for me anyway). When he uses it and can leave it alone, he does sleep without snoring and appears more rested.
Lately, Sean has had difficulty filling his weekly medication containers. He used to have a system for filling and keeping pills straight. I have strongly encouraged this as it's critically important for him to know what medications he takes and when in the event that I am not here to help. Recently I have noticed he frequently misses his afternoon medications, even though he tells me he took them. He is also struggling to take his medications at a regular time. I have started filling his pill containers again and have gone back to reminding him three times a day to take his pills.
I have used Cozi to set up daily and weekly schedules and reminders. We print Sean a weekly schedule and I also have reminders sent to his phone via text message. This would be a wonderful system if he remembered to check his schedule, carry his phone, or read his text messages. I am now thinking I will need to incorporate a morning meeting where we cover the day's plans and hopefully work to a point where he can get through the day with minimal reminders. He wants to be independent. He wants to get more out of his day, especially with his cycling schedule now in place.
I recently ordered some books about veterans with TBI and PTSD to hopefully broaden my understanding and feel less alone. One thing that eats at me is while his behavior and symptoms might be normal, it's not normal compared to how he used to be. As one dear friend in a similar situation said to me, "He is not the man I married." OH WOW!! I have thought that so many many times, and feel tremendous guilt that I can think that way about my husband, but it is so true. The man I married wasn't angry or selfish or needy. He didn't blow up over minor things or say things to hurt. He did not put himself above the rest of us. The toll these years has taken on our family and our marriage is immense. I know we won't ever "go back" to the way it was, but I wonder if we will "go forward?"
Somedays, it feels like we are stuck in a relentless game of Whack-A-Mole because something is always popping up--appointments, kids, on and on and on. . . .
Is anyone out out there to shine a light at the end of this tunnel? It's pretty dark in here.