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
