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 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

Wednesday, July 11, 2012

Exercise in Futility? NO!

Greetings, friends,

As the summer brings floods, fires, strange violent storms called derecho’s, and searing heat, it is also seemingly bringing Caregiver problems with few paths for resolution.  This concerns us and our fellow support teams since we collaborate to keep the levels of family caregiver anxiety, hopelessness, depression, and futility low. 

When we all emphasize and participate in the measured steps needed: first follow the chain of command, elevate to supervisory levels, respectfully further escalate as needed – and scant progress is made, it simply underscores the family’s frustration.  They question:  Do we really matter?  Those who support caregivers, and those who are caregivers are having an especially hard time this summer.  Mind you, no one is complaining at the difficult nature of this work, only at the fact that so many in positions of responsibility are choosing to delay help at best, or commit clinical retaliation at worst. 

In general terms, it appears there is at least passive neglect of many of the reasonably raised issues.  Below are a few comments made by Caregivers recently after they respectfully and with multiple sources of support received no responses or change in care:

  • “Why should we call and write to ___’s office again, it won’t make any difference.  We’ve been ignored since August of 2011”.
  •  “We think the only solution is to move again; this is never going to change”.
  • “We’ve been waiting and waiting for our ratings; isn’t 16 months long enough?”
  • “I’ve been viciously sexually harassed by my husband’s psychologist (in front of him), reported it to the highest levels, and there has been no update for almost a month”.
  • “My husband is supposed to have PTSD counseling every two weeks, but there are no appointments available for two months”.
  • “It’s no surprise to me that caregivers attempt suicide”.
  • “Once we asked for the supervisor’s help, all calls have gone to voicemail without a callback…”
  • “After being connected to our state’s VSO, they were shocked as they shadowed me on a single day at VA, but didn’t do anything we hadn’t already done.  We’re moving and hope it’s better at our new VA”.

  • “I’m too tired to keep fighting for his care…”"
  • I can’t do this anymore…”
  • “I can’t face 40 more years of this…”

All of this underscores the continuing needs of Caregivers, veteran, and service families.  There really must be a better way, and “doing nothing” is not a solution.  Times are hard, and a returned call or email is not asking too much of our institutions.  Failure is not an option for our families!

Keep the faith, and we will too.

Linda Kreter & the VeteranCaregiver Team

Thursday, July 5, 2012

Independence Day

Hi friends,

It’s now July 5th, and the fireworks and parades are gone for another year, but this year, the Tall Ships are sailing to commemorate the War of 1812.  My good friend recently sailed on Maryland's Pride of Baltimore up the Chesapeake Bay, and up the coast to Boston.  He said it was like stepping back in time…

Wars are seemingly omnipresent, but we want to recognize that freedom does not come free, as all of you:  the Caregivers, service members, and veterans, live with the consequences daily. Please know that we salute your service, your commitment, your entire family’s contribution to keeping America free, and safe, and yes, independent.

God bless your service and our country!

Linda Kreter and the VeteranCaregiver team