June 9, 2013

Congressionally Mandated Study on Caregivers for Veterans with TBI

If you are a caregiver of a service member or veteran who served in OIF/OEF and returned with a moderate or severe TBI, you may be eligible to participate in a study requested by Congress. If you or someone you know may be interested, please call 1-855-821-1469 or email caregiver.study@dvbic.org.

Caring for Caregivers


  1. Hi all and thank you all for your service. I am a mother of a combat veteran, with multiple mtbi. I am also a daughter of a soldier. and a sister to 4 brother who fell in action between WWII- KOR.
    I write this so that I can let you all know My family has bled and died for our country. I am not the regular civilian. I am shocked at how little real assistance there actually is for families and the Veterans themselves. I see the cut backs in federal spending are hitting our veterans hard. I am saddened that access to care is limited and so far disappointing.
    I am dealing with my own anger over the system and how people use our veterans to put cash in their own pockets but not actually help.
    My son just back from two combat tours, needs protection and care. I just got him in to the VA for a first visit. It took almost three months to accomplish this. We still do not have a VA card in our possession. No one will speak to me only the veteran. There are serious issues and a constant fear that he will bolt( or end up like all his friends-6 foot under) if he is not guided and given a real care plan. so far none is forthcoming. His doctor only included me at the end of the visit because I was talking to some veterans about how my son gets lost in his own tiny home town. I also was very concerned that he will go for days with little or no sleep. This is dangerous to his physical body as well as to his healing brain. I gave graphic examples. The veterans were understanding me in ways that regular folk in the real world could never understand. I was over heard by a nurse on her smoke break and she made the effort to go in back there and speak the PA.
    But still we have no idea what he can do, should be doing in regards to healing his brain. I am a retired special education teacher. I know there are things he should be doing to help his brain heal, even learning self care, memory and cognitive processing, decision making real skills training.
    I was reading up on PTSD and COS before he came home. I am blessed that he although is physically, mentally, spiritually traumatized in ways that are indescribable. He is here. He came home to me and trusts me. I do not want to let him down by doing the wrong thing or not getting him the care he really needs. His buddies are all suicided out- they let him down. I will not.
    This all being said I need real advise on how to get real care. A interested medical person who will do the testing and prescribe real occupational therapy. I do not want a pill pusher who will mask the issues and just drug him. I see what ambian does to him and he has agreed not to take it anymore. However there are some medications that will work. How to get someone to listen? how to deal with our own lives. We are doing all we can to provide a non stressful and accepting environment. We even go out with him once a week when he wants to go to bars. Yes I know drinking is bad according to medical persons. However if he is going to go out I would rather be there to keep him safe, being there to drive him home. My perspective is he is trying to self medicate. So I am doing my best to proved a safe environment. It is exhausting. I just hope someone has information that gets us the network for this family and access to interested and engaged medical personnel.
    Thjanks all,

  2. Mil Mom,

    Thank you for reaching out and doing everything you can to save your son. He needs you and your family to try and understand what he is going through, even if you never do. I have a resource for you, it's Family of a Vet. They are a national nonprofit working with families and veterans with free online support from volunteers across the US. They provide education on veterans and caregiver benefits along with how to live life after combat. https://www.facebook.com/LifeAfterCombat

    I'm also the Director of the Veterans' PTSD Project where we work with veterans and family members in writing their stories. While I don't think your son is ready for something like this, it would be an honor to have him as part of our group. We mentor our veterans not only through the writing but we share what has worked for us in the recovery process. https://www.facebook.com/veteransptsdproject

    Please contact me by email, I would like to friend you on Facebook and open you up to a world of free online support from other veterans and family members. I belong to a huge network of people working together for common goals and similar principles.

    Have you visited the VA Medical Center near you to get his picture taken for a VA ID? They mail them to you after 7-10 days according to the website. https://www.va.gov/healthbenefits/access/veteran_identification_card.asp

    You may be able to qualify as his caregiver. You would receive a stipend, have access to his mental health and medical appointments and records and have a say in his care. The people at Family of a Vet (FOV) can assist, they are experts in the area.

    You are right that he is in a critical state right now and needs looking after. It usually takes 2-3 months to get the first appointment. But after that you have more say in the frequency of the appointments. The main doctors and practitioners to secure is his Primary Care (PC) doctor, psychiatrist and therapist. Once you have these secured you can get referrals to other departments.

    If any of these are incompetent in the area you need care in you can terminate them. Ask for change of provider form at front desk, put reason and you don't trust them on it and sign. It will start the whole process over again, the 2-3 month wait. I've had to do that several times till I found the people I needed for my care.

    He will probably need medication for some time, but knowing what is good for a combat veteran with chronic and severe PTSD is critical. Prescribing Ambien and the other go to for the VA benzodiazepines for sleep to a vet with PTSD is irresponsible and shows they have not read the latest reports on the subject.

    Know your veterans medications, research them and look for interactions with the other meds he is taking. There are good meds to take for PTSD and bad ones, the VA is good at giving the bad ones first.

    In the meantime between appointments, if he is feeling suicidal he can sign in at the nearest VA. They will keep him at least three days, give him medications and see a psychiatrist and therapist right away. I've done this seven times myself over the last 23 years.

    Keep reaching out and reading on your son's condition, it's important that he trusts you. He needs an anchor in this world, right now he doesn't live in reality. He is lost to the otherness that is the fog of war. He is blessed to have a long line of family military service. If any of your families veterans are still living, it may be good to get them involved in his life more too.

    Keep coming back, please visit my other pages for more and interactive support.

  3. sending prayers and healing , stay strong Mom! and Thank You for serving too!

  4. My PTSD son has said that talking with other vets has been/is very helpful. Wading through the bureaucracy of the VA is difficult and from what I can tell they mainly want to give anti-depressants and sleeping pills. My son did a 30 day in-patient program at the VA hospital in Seattle for PTSD (lots of talk and mindfulness training) and said it was helpful. I could see a big change after it. The mindfulness training was good!

  5. hi scot,
    Thank you for responding. Thank you for your site it is unique and real. Sadly all the warriors in my family have died. The last one during his last deployment.
    we went to the VA for his id the first of JUNE. I tried 2 weeks ago to get them to re-issue ...still waiting.
    I do know in kind what he went through. I was a victim of violent crime some time ago. I've been shot at and so has my husband. We have suffered losses including violent horrific deaths of loved ones, some including suicide deaths we wish we could have prevented in friends. We also have a member of the family who was determined to be mentally ill after a MVA head trauma before tbi's were known. So as I have said we are not regular civilians.
    My son in his intake appointment selected us as his healthcare proxy. I am also medical proxy in his will until September this year.
    You are correct this is a very sensitive time. He is up and down. he is so easily discouraged. he speaks about how detached the many daily contacts with the enemy are like some kind of weird dream. The many deaths haunt him. We had to rebuild his entire childhood, early life up to army life. It is sad, but we got him this far in three months, now he needs a clear path on how to live disabled. He is in denial. some statements from him include" im going crazy", "am I crazy", "this is my brain and it is not working right". However he looks so normal and can sound ok for casual conversation, but anyone who has spent more than a few minutes with him comes to one of the two of us just to check that we know there are issues and see if we are ready to protect him. we have an old combat vet who is on house arrest for DWI- he lives with in walking distance so he is a resource- but a bad example as the whole community has turned against him. He also has stated that he will need a life time of care. Again like his friends a very poor picture of what his future will become. I really want someone who has survived and is doing well in life to take him by the hand (metophorically) and show him there is hope for him. That there is some way to get through this.
    He is very friendly and easily taken advantage of. I fear that should either of us show stress and he thinks it is because of him he will bolt. We know then it is only a matter of time until we get a call, to bury him.
    He was a very gifted and talented young man. he still is.
    I know what he has expressed is a desire to study psych ( to get his Phd) so he can help people. He has had enough of killing. I personally think this is a good goal for him. However he will need help to accomplish this under the disability act- all waiting for the VA. it is also a good therapy goal to understand his own issues and needs.
    As to your writing idea. He had started a novel before the last Blast injury. It was brilliant ( combination of nelson demile and Kipling). I hope with help and assistance some day he can finish the book.
    other ways we are getting him to use his brain playing music with his dad, gardening. fixing the house re learning about the use of power tools.
    I do not have a facebook account but I will learn to adapt and overcome my own fear of the social media so I can be in contact with other combat veterans and families.
    I have been told that any benefits are almost a year or more away.
    again thanks for your kind attention. when he is ready I will ask him to this site- but now he is avoiding stress. Any mention and he is up for days getting the blues.
    mil mom

  6. Im glad your son can speak with other veterans. I was hoping for this before he came home. but the brain injury was worse than expected, pts, cos or ptsd is not presenting as expected. ( he hides it) My son has voiced a great hatred for non combat vets that got to serve of big fobs and not get shelled, shot injured daily. It is hard because all of his battle buddies are either KIA, or suicided the first months the unit came home. Some names still do not show up as KIA (he was there and held them dying, went to memorial services on a fob)and he is mad as he feels their sacrifices are lost. He is hurt and angry lost. So getting him help is frustrating. I need to speak to medical personnel privately. I am well versed in mental health issues as both of us have worked in Mental health facilities. However they will not speak to me. Even when he filled out the health care proxy document at the VA. it is just stupid. Here is a kid who needs help and I can not get him help.
    If any of us had discharged a patient with no care plan in the civilian world we would be up on charges. this is illegal and immoral as well as just wrong .


Please share your comments, stories and information. Thank you. ~ Scott Lee