Wednesday, July 18, 2012

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

4 comments:

  1. Brilliantly written. Thank you for sharing this. As a non-spousal caregiver myself, I understand just a little of your pain and understand a lot of the way in which you are regarded as something to be used and then ignored and discarded. My heart goes out to you all.

    ReplyDelete
  2. Hello,

    I have a quick question about your blog, do you think you could email me?

    I look forward to hearing from you,

    Doug

    ReplyDelete
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