A Wounded Warrior Parent Caregiver - One Perspective

I am the Parent Caregiver of a Wounded Warrior.  This blog is written and directed to those in charge of the Wounded Warrior service programs, the hospitals, the care teams, the Department of Defense, and the Department of Veteran Affairs, referred to here as “you” or the System.  Thank you for your consideration of our experiences.

The Experience

As parent Caregivers in the greater Washington, D.C. area, we help assist in the recovery of our Wounded Warrior children. Our group comes from the old Walter Reed, Bethesda, Ft. Belvoir, and Ft. Meade facilities.

We have issues that spousal caregivers do not have and we are tired and frustrated by the continued lack of communication by the service branches, DoD, VA, and our care teams to address them. (Note that we stand by our fellow caregivers, all, but bring our specific needs to light here.)

As Parent Caregivers, our issues are many, but here are a few we want to share:

1) Healthcare is not readily available (or communicated if available) since we are not a dependent of a service member. We are civilians thrown into a maze of military bureaucracy.

2) Badly need mental health support groups are nonexistent to help parents cope with their unique issues.

3) Unilateral decisions are made by Triads about Wounded Warriors without input or consulting with Caregivers or family members who live with them 24/7.

4) NMA (Non-Medical Attendant) orders are stopped without notification. As a spouse, when NMA orders are stopped, you can continue to care for your warrior and receive benefits or a spouses’ paycheck. However, as a parent - when your small daily stipend ends, there is no means of support while you continue to advocate for your child.  

5) We receive no feedback on warrior or life issues. When we raise our legitimate questions in meetings, there is no mechanism of feedback. And when we follow up, no one provides answers or resolution to the questions. Clinical retaliation often follows, however.  Suddenly, our warriors have medical appointments cancelled, their benefit ratings threatened, or their activities are suddenly halted or forbidden if we continue to ask for help.

6) Personal outside expenses continue to mount. Mortgages don’t go away, nor do utilities, car/health insurance premiums or taxes. We must dip into savings or 401Ks (if we have them) to supplement the small stipends given.

7) Most of us have lost our careers or jobs. Our majority is not covered by the Family Medical Leave Act (FMLA). (FMLA pertains to companies with 50 or more employees offering six months’ non-paid leave). Warriors who suffer catastrophic injuries require years of rehabilitation.

With lost jobs comes lost buying power, and loss of hopes of re-building our savings/retirement for the future.

8) Where are our employment opportunities?  As Care.com put it last week, I guess we could run errands or make gift baskets as they suggested to military spouses, but we were and still are professionals, many holding degrees (bachelor/masters/Ph.Ds, JDs) in a poor job market. Jobs in many of our communities are non-existent.

How much more do you want? 

Our children answered the call to perform a patriotic duty that 99% of other Americans do not answer. They swore an oath of allegiance to defend this country because of their belief in it and what it represents to them. 

And when they were critically injured doing their jobs, you sent them back home asking family members (civilians) to step in to help take care of them. 

We rushed to their bedsides, and did everything in our power to take care of the horrific injuries of our children. We were asked to sacrifice and we did so without complaint. We changed bandages, gave shots, cleaned them, fed them and administered drugs to ease their pain. We teach them to walk, talk, and read again, and to feel valued again.

But somewhere along the way, the System turned on us. We, the parents, unselfishly gave up our time, jobs, friends and families back home. We did not know what was expected of us, were never trained to manage injuries, had no plan or communication to understand what we faced, yet we worked 24/7 by the bedside of our children nursing them back to health.

We watched them suffer the pain of operation after operation and go through the excruciating pain of physical therapy.  We witness their Invisible Injuries of PTSD and TBI. We suffer in our hearts, minds and alongside them.

Here are the realities:

You are worried about suicide? Well, so are we. First, we need mental health help even as we provide the psychological encouragement to our children and to your warriors, needed to overcome the tough times. We have continued to fight the System on their behalf for medical and psychological treatment. We worked hard and never complained. Yet we felt abused and used by a System that didn’t care about our recovering Wounded Warriors or us. See the May 28, 2012, Newsweek article, “We Pretend the Vets Don’t Even Exist,” for a glimpse of what’s happening to our soon-to-be Veterans in the civilian world.

You encourage support of Invisible Injuries. Well, we were there to comfort our children and your warriors when you paraded them in front of the public to show our “heroes” and their visible war injuries. We are here when you no longer needed them because they don’t still show some of the ravages of war as they healed.  We have watched while the top leadership of this country looked directly at our warriors and then walk past them to a service member who had a Visible Injury.  The emotional injury to a warrior who feels their leadership deems them unworthy of recognition because their injury is invisible is deep.  If you don’t acknowledge PTSD or TBI, how do you expect the civilian world to?

The System talks of listening to our needs in order to develop supportive programs. Yet, we were and are ignored. As parents, we have had many years of real world and life experiences (from birth to death) to share. Instead, we have been dismissed, intimidated, bullied, and told to “stop whining”, and are now being labeled as “malingerers” as we speak up against the broken System.  Really? Well, we are tired of you not listening.

We have tried working through the Chain(s) of Command as instructed to do so. And, we have only found frustration and lack of accountability. There is very little to no communication with you. We have formed our own network, so we can learn from each other. We care about our children unconditionally and demand fair and equal treatment for them. Yet you dismiss our concerns.

You, the System have abused your power and have used us. You made us live in some of the most unimaginable living conditions in the past and under the stress of your constant demands and demeaning comments.

We are now starting to see high rates of suicide daily that will only escalate.  One suicide a day in 2012!  How many lives will this experience have changed, and that no study can ever measure? As Caregivers, we watch and evaluate your performance and interactions daily.

In summation, you are not meeting the needs of our Wounded Warriors with the overburdened and bureaucratic system of medical care provided. It appears you are not focused on the Wounded Warriors or families. It also appears that your focus is to move our Wounded Warriors through the DoD system as quickly as you can even if it means not completing their medical treatment. It then appears that your focus is to dump them into the equally or even more broken VA medical system. Thus, the burden of care is kept on the family members who have already sacrificed so much.

As for our Wounded Warriors, you have abandoned them along with the values that you supposedly purport. The words once etched in the walls of the old Walter Reed Army Medical Center have no meaning when it comes to our Wounded Warriors’ medical treatment:  loyalty, duty, respect, self-less service, honor, integrity, and personal courage.

For shame…

Parent Caregiver of OIF/OEF Warrior

Suicide Straight Talk: Transforming Taboo to Hope

Greetings, friends,

Last night, I was sent this blog posting by a veteran and asked to post it if I felt it was worthwhile.  I thought it was striking and very relevant.  Please let us know your thoughts on this difficult topic here or on Veterancaregiver. Here it is:

I recently had a discussion with a person who is advocating for veterans with PTSD that went down the road of talking about suicide.  For me, having been through my own issues with not wanting to live, having been first and second hand witness to others taking their lives, the topic doesn't scare me.  As I relayed my thoughts about suicide and other subjects of significantly less importance I realized the person had fled somewhere inside their mind.  Then the walls went up and the discussion was over.  It was like I was a very scary person for being so plain and being so up front about this topic.  I was surprised and mystified.  

I have been involved in spiritual groups from many traditions, psych groups of all kinds and though we'll talk all about disease and people killing each other and even advocate, some from a very clearly spiritual place, that it's quite all right to kill people who may or may not be a threat to the proverbial us/U.S., it would seem the subject of suicide is still taboo.  

*

I told another person I consider to be a friend that I think this is wrong and backward.  If the collective we aren't supposed to talk about it how are we to heal it?  Suicidality shows as a symptom in a larger cluster of symptoms for many mental illnesses and also for illnesses deemed terminal.  Here's the problem.  We'll go to extremes in health care to manage symptoms that cause discomfort but the ONE symptom that will cause death we treat in a completely different manner.  We're told NOT to talk about it.  We're told to let someone else at a call center who has never met our loved one talk to them.  Basically, we're told to be quiet, let the professionals handle it and tell the same to our vets.  

Now wait a minute.  Convince me that some stranger knows my vet or that my vet knows anyone who knows how they're feeling BETTER than me or my vet does.  I'm not buying it.  So now the caregiver is made even more uncomfortable because they've been told they know less about someone they love and they've gotten the double whammy of being told they're just not capable of handling things.  That's not character building and now it's possible there is a wall in a relationship that might not have been there before.

Consider this from the veteran's perspective.  The vet talks to the person they trust probably the most about the subject and thinks they have made a wise choice.   But it all goes sideways because caregivers are being told they can't handle this.  If then the next stop is diversion to a crisis hotline and the call goes well the vet is still left to believe that their person who they chose to trust, probably for good reasons, isn't who they're SUPPOSED to talk with.  The vet is left feeling that they don't know themselves, can't make sound decisions and suicidal statements of any kind will get the police called to take them for supervision on a psych unit.  Obviously, you don't want to dis-empower someone who is experiencing a symptom that can kill them.  But having been through this that is exactly what happens.  

Many vets have vowed never to call for help if they need it and since they were told either explicitly or implicitly that they should have known not to talk to the person/people they trust, now the system has very effectively isolated them.  Sadly, isolation is also a symptom that has a high potential to kill and has been proven to drive people over the edge who were plainly functional before they were isolated.  If this sounds too extreme consider the topic.

Now consider that we train our military to kill people.  Every single person in the military, unless they didn't make it out of their initial training, is trained to kill.  Right now we have a slew of folks coming home who have been in theater, reacting, and their transition back to civilian life or even just every day military life at home is completely different.  When you have viewed life through red alert long enough, fight or flee, kill or be killed, or freeze to avoid any notice, NOTHING is normal anymore.  Every single thing is processed through this new normal.  Healing can be had but it doesn't happen overnight and if we don't encourage people to talk who have been trained to kill, the results, as proven already by statistics, are going to be horrible.

My bottom line is this.  I've been there.  I've attempted and failed.  I've thought a lot about that and I've still thought about dying by my own hands.  I have watched the aftermath of that and also experienced suicide this winter by a friend of someone who is very dear to me who was brilliant and had a beautiful wife and baby girl.  His diagnosis?  Major Depression.  Depression didn't kill him; suicidality as a taboo symptom acted out killed him.  I have isolated myself from people who might listen because I'm terrified they won't.  Why?  Because I've been told I'm wrong and crazy and that somebody knows better than me about me and somebody knows better than the people who love me.

I am certain this is wrong.  We need to push for VA and the DoD to help caregivers and veterans and/or those still enlisted to OPENLY talk about suicide.  We need to talk about that SYMPTOM because there's a good chance in this case the diseases and disorders can be managed but that symptom will kill you.  We need to stop punishing and demeaning people who may not be trained in psych but do possess common sense and love their people.  The folks who love me can call 911 just as easily as somebody in a call center and they might actually be able to speak intelligently about what led up to the symptom escalating.  We need to stop punishing people who have this symptom and want to just talk because if somebody is actively suicidal the Hell in their mind is far greater than any punitive or embarrassing action someone will take against them.  Too many veterans have closed their mouths because of interactions like this.  We need to let our heroes come home again, no matter how many years later, without the stigma.

Until the statistics change for the better we need to keep talking about SUICIDE.  We need to form groups to talk ABOUT SUICIDE.  We need to stop telling people that a symptom is a crime because though not taken to prison, suicide is against the law in every state in this nation.  We need to empower people to lift one another up.  We need to enable and encourage caregivers and their vets to talk about this subject openly and to invite in care as they need and want it.  We need to have a complete change of policy with DoD so that enlisted military can talk without fear of repercussion.  We need to recognize that this is a United States of America problem and we all have a responsibility to unite and help shift it to a living solution. 

The greatest wars are the ones fought in our hearts.  Let's bring these warriors hearts together in respect and understanding.  It is long past time.

With Great Peace and Hope,

A USA vet 

© 2012


*Image created in Tagzedo