Hanging in the Wind

I need to go back and clarify a little.  Sean was pleased with the PTSD program in St. Cloud, and he came out feeling better in many ways.  We saw changes at home and the first month home went exceptionally well.  I do not mean to knock the program, and after reading Sean’s medical notes, I believe they did a fine job.  HOWEVER, if you listened to any of my testimony you are aware that during the 2 1/2 months Sean was a patient at the St. Cloud VA, no one ever contacted me.  Not a doctor, not a psychologist, not a psychiatrist, no nurses, no social workers, no case managers.  Not once.  I feel that was a HUGE oversight to leave the family component completely out of the picture.  They did not ask for any input regarding the problems he has at home, or what our concerns were.  They also did NOT call or make contact to give feedback or updates on Sean’s progress, or to help us understand PTSD or his treatment plan.  What they did do was send home his medical records from his stay–all 375 pages–and say, “Tell your wife to call if she has any questions.”  Are you kidding me? 

As if it wasn’t bad enough that it took three years to get Sean into a comprehensive program (delays were due to faulty diagnosis, need for blind rehab, etc.), now they were turning him loose without adequately educating the people who live with and care for him.  I think that’s a shame.  The VA needs to do a better job of involving the family members and caregivers, and providing them with the information and education they need.  It cannot simply be, “You have PTSD.  See you next week.”  We go home and live with this EVERY day, they only have to think about us for the hour we’re in the office.  I think their policies would change if they had to spend their lives the way we do. 

I can see I’m worked up by my excessive use of CAPS.  Deep breathing. . . counting to 10. . . again. . . . and again. . .

After Sean returned from the PTSD program in St. Cloud we read through all 375 pages of medical notes.  Then I contacted our case worker to ask about follow up.  It took several weeks for the response from the VA that Sean’s follow up would consist of EMDR treatment.  Another two weeks and the provider had been lined up in Sioux Falls for appointments every other week. 
These appointments began the week after my leave of absence started, so in spite of my regrets, it truly was the best decision for us and for my students. 

I read a book on EMDR and quite honestly, I cannot say whether I think it is the miracle breakthrough it claims to be, or if I think it’s too good to be true, but since I am not the mental health professional, I’ll let my opinions go.  Suffice it to say I am not able to describe the process any better than to say it involves a long light bar which in Sean’s case had to be directly in front of his eyes.  The light moves back and forth and as you follow the light with your eyes there are tones played in alternate ears on headphones.  The therapist then asks you to focus on a trauma, do a little talking, the watch the lights and listen to the tones and it’s supposed to help the brain process the information. 

Well, the light hurt Sean’s eyes, he had pain from moving his eyes side to side.  The tones in his ears agitated him (as to most bells, sirens, beeps).  So not much got done in therapy. 

After about six sessions he talked to Dr. K in mid April and asked for alternatives.  Dr. K suggested he switch to Cognitive Processing Therapy (CPT).  Sean contacted our case worker and she agreed to make the arrangements.  Finally in mid-June an appointment was arranged with a psychologist at the Sioux Falls VA.  Now it is August and he is finally getting started with the CPT.  It feels like we have wasted seven months.  I understand that things take time, but does it really need to be so difficult to get treatment?

Sean has been most frustrated by the lack of peer support group options and family options.  In St. Cloud he met with an OIF peer support group every day.  We do not have a group in Aberdeen.  The group in Sioux Falls is closed, so he must wait until fall when a new group starts.  Dr. K told us he was trying to get a provider to travel to Aberdeen one day a month to start a group as he had plenty of patients willing to participate.  When I asked one case manager about the possibility, she told me there were not enough people interested in Aberdeen.  Who should we believe?  The doctor who works with the patients, or the case manager who does not know them?  At any rate, I think the VA needs to find a way to either provide traveling staff to rural areas for both 1:1 and group therapy, and they need to more adequately use their V-Tel technology.  Good grief, we have three computers in our home with webcams.  It seems to me that it would be inexpensive to link up a group of 10 soldiers from anywhere in the country with a provider once or twice a month. 

So now, almost eight months after being released from St. Cloud, Sean is getting appropriate follow up for his PTSD symptoms.  Man, if I moved this slowly at my job I would be FIRED!

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