Tuesday, December 18, 2012

Good Ripples

When I was very small I remember a neighbor coming to our house one day. Her name was Miss Thomas. I don't think my mother knew her well but she had a book for me. It was called The Mystery of Hallowdene Farm.  I think it must have been hers when she was a child because it was printed about 1920.It was just a gentle story for girls and I still have the book among my others.  Every time I look at that worn book I remember Miss Thomas and her one visit to our house.
My point here? It makes me remember how small things can affect others long after they might otherwise be forgotten and it is the small things that make up our day-today existence.

I see my life-actions as a series of ripples, like a stone thrown into a pool. The ripples move out, sometimes they mesh with other ripples and change direction. Sometimes they travel a long distance. We may never know what effect our ripples have. If we send out ripples of caring, love, compassion and understanding, these good ripples may have an effect that we are unaware of, or may never know about. That does not matter. When I smile at a stranger, allow someone ahead of me in the grocery line, say a cheerful word to a grocery store clerk or in other ways bring love and light to the people around me, I am sending out good ripples.
I wonder if a good ripple would have made any difference in the life of the persons who have wielded guns in this past week and taken so many lives.  We are unable to know, but this does not stop me trying to send out all the good ripples I can. I don't know if it would stop a person with murder in his heart. I don’t know if it would help a suicidal person stop and think before committing the act. I do know that I have to try.
The events of this past week are going to with us for a very long time. I cannot think there can be many people in the US who are not appalled by these recent shootings.  It does make me reflect  on the fact that we tend to ignore the small things in our lives.  Just think how good life could be if we all made an effort to send out those good ripples. Best of all it does not cost a thing.
Wishing you all a Blessed Holiday Season.

Wednesday, December 12, 2012

The Basics of Help ...

Greetings, friends,

For many of you, the following information will be basic and instinctive to you.  However, recently we’ve received 35 calls about how to navigate the medical or legislative system, and we thought the following guidance might be helpful.

What do I do when I need caregiver help?

If you are already in the National Caregiver Program, contact your Caregiver Support Coordinator (CSC) at your local VA medical center.  If s/he is not in, ask for the alternate, and leave a voicemail.  It’s a good idea to also follow-up with an email, and their email can usually be found through an Internet search.  You can ask for the email address, and if it’s not forthcoming, ask who else can help you.

If you’re not in the Caregiver Program, you can still use the Caregiver Support Line and request help and guidance.  If your issue is outside the responsibilities of the CSC, then ask who you should be directed to for problem resolution.  It will likely be someone else in the Social Work Office. 

Caregiver Support Line 1-855-260-3274

What do I do when I need help with my Veteran’s medical care?

If you have already spoken with your primary care physician, or in the case of mental health, the psychologist, we suggest contacting various VA advocates.  If your veteran is an OIF/OEF/OND veteran, there is a specific OIF/OEF Coordinator, whose name may be found with an Internet search, a VA website search, or by calling your local VA medical center.  They are often able to cut through issues very simply for you.

If the issue relates to a disagreement over care or other conflict, you would contact the VA Patient Advocate at your local VA.  This person may be found on the VA website, through an Internet search or by calling.  If there is a formal report or complaint to make, ask for the proper forms and be sure to follow all the steps directed so that you will find resolution.  You may need to be quite persistent, and you will need to judge the seriousness of your issue.

What do I do if I need help understanding VA process (paperwork, fee base, etc.)?

The Internet is an excellent source of information, but it may be a huge undertaking to find out the nugget of information needed.  Obtain one of the VA Handbooks on Benefits (you can download it or obtain a hard copy at your local VA) to find out who to talk with for specific needs.  

Why use a VSO?

We also highly recommend contacting one of the chartered Veterans Service Organizations (VSO’s) such as AmVets, Vietnam Vets of America, DAV, the Legion and others.  You can find a list on the va.gov website.  It is highly recommended that you use an organization to help you since VA benefits and processes change with the legislation and it can be a daunting task keeping up with the changes.

The importance of peers is...

Ask your fellow caregivers.  Your peers often have great experiences to share, so post here, write to your friends, and seek out others locally who can provide you practical information.  Seek out others while at the VA and absorb all you can; what you learn will either help you, or others in the future.

This is a starting point...

Linda Kreter & the VeteranCaregiver Team

Sunday, November 11, 2012

Blessings and Gratitude on Veterans Day 2012

Greetings on this Veterans Day 2012,

Our heartfelt thanks to our Veterans today  -- and their entire extended group of family and friends.  We trust that you know that we treat each and every day as Veterans Day, but on this one day set aside each year, we give you special thanks.

We also specifically give thanks to the Caregivers of our wounded, ill, and injured veterans.  We thank the children who grow up very quickly and often also bear the invisible wounds of war with their parents.  We thank parents who care for their adult children and for siblings, extended family and friends who do the same.  The challenges you meet and the way you keep your faces turned to the light mean so much to this land.

Every day the flag flies over the land of the free, it is because of the actions and valor of the brave.  We love our country, and we honor you today with an extra measure of love and care.

God bless you,

Linda and the Veterancaregiver Team

Monday, October 8, 2012

Response to Military Suicide Article

The Pentagon's "Quick" Fix is NO FIX to Military Suicide

By:  Rev. Dr. Chrys L. Parker, J.D., PTSD specialist

It's an unfortunate irony that the Defense Department apparently believes that its proposed ban on servicepersons' privately owned guns will serve as a "silver bullet" that will prevent or reduce suicide among service members. 

Such a proposal, while no doubt well intended, is reflective of the Pentagon's misguided and ineffective search for quick and simplistic answers to complex problems of the human psyche, which are the inevitable product of war.  While the military is undoubtedly skilled in marshalling men and regulating the use of arms on the battlefield, the ongoing battle within the mind of the traumatized and suicidal soldier is of a very different kind.   The skills needed for the first kind of battle are ineffectual in fighting the second. 

The military was designed to fight wars, and does so with competence.   But as an institution, the military was never designed to be the curer of wounded souls.  When confronted with the alarming psychological byproduct of war,  the military seeks to employ "default" solutions which, in its estimation, will fix a problem through the issuance of orders.

 Soldiers do not become suicidal simply because they possess weapons.  And they will not avoid suicide, based on an order not to possess them.  After all, suicide may just as easily be accomplished with a service weapon, and frequently is.  If possession of private weapons is (erroneously) deemed to be the factor which initiates suicide, then we must be led to the ludicrous conclusion that a ban on all weapons, including service weapons, would be in order if we are to really get serious about reducing the rate of military suicide.

 Obviously, the Pentagon is not logically thinking this problem through to its thoroughly illogical conclusion.  In a desperate move to find a quick "fix" that can be implemented by legislation and M.P.'s, instead of through appropriate, empathic and personally rendered care, the military is firing without aiming first.  It seeks to control the means of suicide, without bothering to examine the reasons that warriors adopt those means in the first place. 

And, to be sure,  there are plenty of means that remain available to the suicidal serviceperson, whether private firearms are banned or not.   It is patently obvious that the nameless "senior Defense Department officials," who have concocted the suggested ban on private weapons,   spend little or no time whatsoever actually talking, working, or counseling with REAL suicidal warriors, like the ones I see and counsel every day.  

In coming to illogical conclusions about what drives suicide, or by what means it is accomplished, the Pentagon appears not to learn from its own reports. For proof of that, one may look back at the DoD Epidemiological  Report on Suicide for  the year 2009, which references the number of suicides accomplished by hanging. 

Would the Pentagon therefore propose that we inspect the house of every warrior for rope and seize the household clothesline, as an "effective" plan for suicide reduction?   Having begun with private weapons, and moved on to rope,  should we also plan on banning razors, kitchen knives,  motorcycles,  and automobiles,  which are also prominent instrumentalities of suicide? 

The additional suggestion that prescription drugs be removed from households by spouses of "at risk" soldiers is irrational and ineffective.  It presumes, first, that "at risk" soldiers can be systematically identified.  Suicidal soldiers will be the first to tell you that if they are truly serious about taking their lives, they will deliberately evade identification.

Assuming, however, that a soldier is identified as genuinely "at risk" of suicide, that soldier ought to be in treatment, NOT left sitting in his bathroom contemplating the contents of the medicine cabinet.  Having failed to make adequate treatment accessible, the military is shifting the burden of care to spouses, who are not the proper persons upon whose shoulders the psychiatric management of soldiers should be foisted. 

I am sure that the good intentions of Dr. Jonathan Woodson,  Assistant  Secretary of Defense for Health Affairs, are not to be doubted… only his ability to grasp the obvious.  The "obvious" is that (l) removal of prescription drugs may also serve to defeat the administration of bona fide medical treatment;  (2) removal  of the drugs of one person would  extend to removal of  ALL drugs for  ALL family members ;  and  (3)  a suicidal soldier may obtain lethal drugs from many sources outside the home ,  including the $3.00 bottle of acetaminophen (Tylenol) from the local drug store. 

The illogic of these proposals, not to mention their unconstitutionality, is astonishing.

"Orders" are things the military knows well.  Orders lend, to the military, both the internal feeling and the public perception that  things are "under control."   Orders are calming, because they make it appear that a problem has been put to rest.  But "orders" are also utterly ineffective to salve the deep wounds which cause many warriors to lose all sense of meaning and all desire to live.  The only thing which this proposed order will put to rest, are the lifeless bodies of soldiers who have ended their lives, in countless other ways,  despite the military's "orders" that they not commit suicide by firearm.

 As a mental  health provider,  as a Chaplain in service to military members and veterans, and as a contract military trainer,  it pains me to see the military utilize its time, resources, and talented personnel in continually avoiding the nature of the suicide problem, instead of addressing its underlying realities.

Suicide is not a weapons problem, or a drug problem, any more than it is a rope or razor problem.  It is an existential problem… a deep wound to soul and psyche of incalculable depth, which creates an absolute belief in the mind of the warrior that his or her existence is absolutely of no value or worth.  This is what drives suicide.

What is actually of no value or worth in preventing suicide is the use of weapons bans, prescription bans, or digitized slide shows which attempt to "lecture" despairing soldiers into  living against their will, rather than by providing them the relational care they need.

For some, suicide is the only means of escaping the unremitting terrors of gruesome and horrifying battles that are continually re-enacted in flashbacks which medication cannot remedy.  For others, suicide feels like the only "adequate penance" for intense guilt over having survived when one's buddies did not.  For others it is a reflection of the inability to "occupy" a body or soul that has become soiled by the brutalities of war, or the deaths of others caused by the performance of one's duty. 

Every warrior who suicides has his or her reason.   But whatever the reason, all suicides constitute a "final solution" for  people whose deep personal pain is fed not  by guns, but by mental, social and spiritual isolation, exclusion,  and the knowledge that the relational support  which they experience in the combat theater is no longer present for them when they return to the rear. 

It was my privilege to go to the Iraqi theater in 2010.  Now I understand why warriors are at lesser risk of suicide in theater than they are at home.  There is not a single suicidal warrior whom I counsel who would not willingly return to the war overseas, where men and women are kept alive by the close relational bonds connecting those who live, work and fight together and have a shared sense of life's meaning.  Society, however, often defines meaning in wholly different terms, into which some returning servicepersons no longer fit in the light of what they have experienced.   As a result they quickly feel unfit to be a part of the society they risk so much to defend. 

 Sadly, where some servicepersons they believe they DO "fit" is in deep, black emotional chasms into which warriors fall soon after they return to a life that is full of material comforts, but bereft of meaning.

 No private weapons ban will instill the will to live in warriors whose lives have been stripped of meaning.  Stripping them of weapons will only encourage them to look for other available exits from life. 

 Better that our military and our entire society focus our attention less on the false comforts of quick fixes, and more on providing empathic care, rendered shoulder to shoulder and face to face.  The hope that defuses suicidality is not found in a military "no weapons" order, but in the eyes of  other human beings who truly care.

Rev. Dr. Chrys L. Parker is co-author, along with Harry Croft, M.D., of the book I Always Sit with My Back to The Wall. She is a clinical chaplain, pastoral counselor and trauma therapist who has provided care for over 2,500 traumatized persons.  Harry Croft M.D. is a former Army doctor and psychiatrist who has evaluated more than 7,000 veterans with PTSD.  Visit www.mybacktothewall.com

Monday, September 24, 2012

Warrior Regatta & Veteran Golf Event - Days to Remember!


There are thousands of events nationwide that are raising awareness of the lives of our returning warriors, veterans, and their families.  There’s something very special about being outdoors, being treated “normally”, and enjoying the camaraderie of your peers that does a heart (and mind!) good.  Here are a few words about two events close to our hearts.

At the recent Wounded Warrior Regatta in Annapolis, Boeing sponsored a (surprisingly blustery!) day on the Bay in specially rigged sailboats designed for various disabilities.  The US Naval Academy Sailing Team coached the participants and many activities were planned for the entire group, including special activities for Caregivers, children, and friends. We were proud to provide time and awards to the group. This event was attended by elite Navy leadership which added accessibility to sharing warrior issues -- indeed a bonus for warrior families. Those that participated learned that sailing is both a physical joy and a mental game, very competitive, and you just plain feel good after a day on the water! 

On Friday, Blue Star Families held their First Annual Golf Tournament, and another fantastic fall day lent itself to a group of over 40 veterans.  As a partner with Blue Star Families, VeteranCaregiver volunteered time and gift awards to the event. BSF Leadership is very aware of the importance of family and highlighted their many programs (Books for Bases, Blue Star Museums, and more) to again raise awareness of the continuing value and contributions of veterans as they reside in communities across the nation.  As always, a host of volunteers is needed to attend to the many details, and this event was a real joy to all participants!

If you’d like to share your local event with us, please send me an email at info@wisehealth.com.  What works best for you and your vet?  Would you like to do events together as vet/caregiver, or separately?  Inquiring minds…  Enjoy your week!

Linda & the VeteranCaregiver Team

Sunday, September 16, 2012

Inconsistent Caregiver Program Causes Frustration and Invisible Wounds are Still Invisible

Invisible wounds have been talked about many times, but why does it seem as though the struggles of those with them are falling on deaf ears?  My husband is a 100% P&T disabled veteran through the VA who also receives SMC (special monthly compensation) due to his wounds.  While most of his are invisible, he does have a few things that are visible though not enough to actually get any attention or concern.  While overall our VA experiences have been pretty decent, we recently have run into a huge issue. 

About a year ago we moved across the country in hopes of my husband receiving better medical care and being back in a familiar place, the area that he grew up in.  At first, everything was going very well.  It seemed like we had a supportive care team and all that jazz.  Recently, however, it seems as though no one wants to read the records from our previous state, and they just don't seem to care at all what former doctors with the same degree's have said.  Not only do I find this incredibly unprofessional, but it's insulting as well to those therapists and doctor's that have previously worked with us. 

Doctor's with text book knowledge  though they may try, if they don't have personal experience or are at least willing to listen to your personal caregiving experience, with some of these conditions  they are only going to see things from one perspective.  It is frustrating attempting to be a successful advocate, when you can't get the care team to understand all that you do.  While making lists of what you do daily may be helpful, it still can be difficult to get your point across. 

Our recent issues specifically stem from the national caregiver program.  While I think the intention of this program is a positive one, the implementation of it is not the greatest.  There seem to be huge inconsistencies from state to state, and the interpretation of the program is left up to each local VA system, as I have yet to hear of it being done the same anywhere. I am at least somewhat happy to know that the folks in DC who run this program are at least aware of the inconsistencies and are working on ways to address the problem. 

I think finding a compassionate and understanding care team is nearly impossible as well. If you have one that is wonderful and listens to your concerns, be very grateful as that is the minority from the stories I have heard.  I sometimes wonder if the provider's experience personal burnout as they are dealing with many veterans and high caseloads.  I do not consider this a valid excuse, though I do wonder what is being done on the VA's end to approach this topic, if anything.  Our Caregiver Coordinator has been horrendous.  Not only did she belittle my husband's concerns, she just didn't care and insisted that they were correct in their assessment.  It seems as though you could potentially find yourself in continuous appeals with this program, as they have the right to re-evaluate your Veteran and their eligibility whenever they want to.    

Release of Information has become our best friend in this nightmare.  Not only do we have the right to know what the providers are saying, it is vital that we do know so that we can make sure things are being done correctly.  Unfortunately in this situation, not only have things been done incorrectly, but the attitude we have been shown has also been highly unprofessional and uncalled for.  We are committed to appealing this recent decision of theirs to lower him from tier 3 to 2, as his TBI and PTSD were never even taken into consideration in the evaluation, nor were we even present when it was filled out by the PCM.  It is sad that getting a correct evaluation with a pleasant demeanor is so difficult to achieve. 

You would think that our Veterans are being treated well, but unfortunately that is often not the case at all.  I have heard many other caregiver's echo that they have not had a positive experience with the caregiver program, I think if the evaluation was more consistent and worded differently and doctors were being trained on how to fill them out correctly, many appeals would never have to happen, and time could be saved.  I am an easy person to work with when you are respectful to me, but there is no reason for the rude attitude that has been shown us and our Veteran's and their caregivers deserve much more than this.  What have your experiences been with the caregiver program?  I am hopeful that others have had a positive experience and been treated fairly. 

I want to add that we are filing formal complaints with our patient advocates, as I am a firm believer that we cannot let this kind of attitude and behavior from VA employee's just slide.  If we don't all start taking a stand, who will?

Thanks for reading!

Anonymous Caregiver to an OIF Vet

Wednesday, September 12, 2012

Veterans Crisis Line Outreach Blog Post

Veterans Crisis Line
Suicide Prevention Month Partner Outreach
Blog Post
Stand by Them:
Show Your Support for Veterans During Suicide Prevention Month

September is national Suicide Prevention Month, an important reminder that you can make a difference in the life of a Veteran every month and every day. The U.S. Department of Veterans Affairs (VA) needs organizations and individuals across the country to educate their communities about the signs of suicide risk and raise awareness about the free, confidential support available from the Veterans Crisis Line. To accomplish this mission, VA encourages Veterans’ communities, friends, and family members to get involved, learn more, and help spread the word to promote mental health and prevent Veteran suicide.

A critical step in preventing suicide is learning to recognize warning signs. Although many at-risk Veterans may not show any signs of intent to harm themselves, there are behaviors that could indicate that a Veteran needs support. In addition to talking about suicide or hurting oneself, some signs that a Veteran may be at risk for suicide include engaging in risky behaviors, withdrawing from family and friends, and feeling hopeless, anxious, and angry. To learn about additional signs that someone may be at risk, go to www.VeteransCrisisLine.net/SignsOfCrisis.  

If a Veteran you know exhibits any of these signs, trained professionals—many of them Veterans themselves—at the Veterans Crisis Line can help. Just call 1-800-273-8255 and Press 1, chat online at www.VeteransCrisisLine.net/Chat, or text to 838255 for free, confidential support, 24 hours a day, seven days a week, 365 days a year.

Since its launch in 2007, the Veterans Crisis Line has answered more than 640,000 calls and made more than 23,000 life-saving rescues. In 2009, an anonymous online chat service was added, which has helped more than 50,000 people. In November 2011, the Veterans Crisis Line introduced a text messaging service to provide another way for Veterans to connect with round-the-clock support. Qualified and caring VA responders are also able to provide referrals to local VA services and aid Veterans in getting fast-tracked mental health care within VA.

Every American can help prevent Veteran suicide. During Suicide Prevention Month, stand by our Veterans and their loved ones. Spread the word about the Veterans Crisis Line and help make sure that all Veterans know that confidential support is only a call, click, or text away. Go to www.VeteransCrisisLine.net/Pledge to take the Suicide Prevention Month pledge and learn how you can educate yourself and those around you about suicide risk and the Veterans Crisis Line.

You can also visit www.VeteransCrisisLine.net/SPMSupport to download free Suicide Prevention Month materials, including posters and flyers that you can print and distribute in your community; online ads in a variety of sizes and formats to display on your website; and, free, ready-to-go content for your Facebook page, Twitter feed, newsletters, or other print materials.

Our Veterans stood by us. Now let’s stand by them. Together, we can make sure they get the support they earned and deserve.

Visit www.VeteransCrisisLine.net to learn more.

To learn about additional warning signs of crisis, go to www.VeteransCrisisLine.net/SignsOfCrisis  

Monday, August 27, 2012

Do You Have An Emergency Plan?

Hi friends!

As Hurricane Isaac bears down today on Mississippi and Louisiana, it brought to mind the crucial necessity of having an Emergency Plan for your household.  Do you have one?  Have a clue where you put it?

If you do not, now is a very good time to write one, post it/store it in an obvious location, and include (at the bare minimum) the following:

- Emergency contact phone numbers
- Your VA care team names and phone numbers
- Possible shelter locations or where you might wait out the storm
- Fuel your car ahead of time
- Create a Notification Plan (neighbors, family, etc.)
- Make plans for your pets
- Charge your phone 
- If evacuation is needed, pack an Emergency Bag with medications, any documentation needed, clothes, food, water, your cell phone charger, and significant items needed to make your caregiving possible in unusual circumstances

This link is helpful for specific plans and outlines (http://www.nhc.noaa.gov/prepare/ready.php#planact), and we urge you to always have a household Emergency Plan (posting on the refrigerator is a good idea) so that you can better focus your efforts when or if the time arises that you need it.

Stay safe, and know we are thinking about you today and each day there are disasters beyond our control.  Planning gives peace of mind!

The VeteranCaregiver Team

Thursday, August 23, 2012

Traumatic Brain Injury Updates

Greetings all,

Despite the enormous effort to provide articles, webinars, PSA’s, and more on the Invisible Injuries of PTSD and TBI, it seems that there are still too many families (and medical staff) that feel many of the symptoms are “in your head”.  There are two very good TBI blog posts by the Defense Centers of Excellence for Traumatic Brain Injury that may resonate with you and your warrior or veteran. 

The first addresses Neuroendocrine Dysfunction in TBI (http://www.dcoe.health.mil/blog/article.aspx?id=1&postid=402) and the second, older one discusses what the families may experience and how to best identify the problem and support your warrior (http://www.dcoe.health.mil/blog/article.aspx?id=1&postid=359).

Undiagnosed TBI can lead to devastating outcomes for relationships. Many families talk about the “lack of verbal filters”, the short-term memory loss, mood swings, paranoia, and the agitation that TBI may present.  And, if you or your veteran is unfortunate enough to not receive care for your TBI because the doctors say “you look fine; just adapt”, you may need to  persist and document the symptoms to obtain care.  Be alert to support those fighting to make sense of their lives when they suddenly can’t keep it together, but don’t understand what their list of symptoms may mean. 

The military is taking notice and working diligently to identify and treat TBI beginning in-country. A new blast exposure technical tool is in use for measuring blast exposure and potential injuries.  Protocols exist for first, second, and subsequent concussive events.  But, the families must be aware to bring specific behaviors to the attention of the warrior or veteran, as symptoms can manifest long after the last event. 

Consider the increased suicide risk without diagnosis and treatment of even mild TBI in this third article:  (http://www.traumaticbraininjury.net/diagnosis-of-traumatic-brain-injury-key-to-preventing-military-suicide/).  Traumatic Brain Injury is serious, but there are options.  Continually learn about new research and treatments alternatives -- and do not give up the quest for diagnosis and management.

With respect and care,

Linda Kreter and the VeteranCaregiver Team 

Tuesday, August 7, 2012

Caregiver Employment


After the flurry of Facebook comments, Tweets, emails, and phone calls that followed a recent article about (highly controversial) recommended jobs for military spouses, a group of us were discussing the potential for Caregiver employment.  This is still a very small blip on the service family employment radar, but it’s a critical one.

Like many MilSpouses, Caregivers are a diverse and well-educated group.  Firm statistics are hard to find, but many Caregivers have advanced degrees, were meaningfully employed or enrolled in higher studies prior to service member injury, and in the case of parental caregivers, had risen steadily up the professional ladder.  Many Caregivers possess licensed, portable professional credentials.  And, as one caregiver said:  “I haven’t changed from who I was, and my skills, experience, and now these challenges have made me a better potential employee”.  We agree.

As the many job fairs around the country focus on veteran and mil spouse employment, we also hope that companies will reach out with flexible, thought-provoking, challenging positions for Caregivers who seek employment.  With strong planning and communication, Caregivers are phenomenally resourceful, dedicated, and excellent change agents.  After navigating the labyrinthine medical system and in supporting their warrior while juggling many positions including relocation specialist, medical advocate, adaptive housing, superb communicator, and remarkable document specialist, we believe that Caregivers would be one of the highest priorities for employers, especially when that work can be performed and tasks completed flexibly, part-time (if needed),at home.

Caregivers give their all. Everyday. 

Please support employment opportunities for Caregivers!

Linda Kreter & the VeteranCaregiver Team

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

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