What Non-Caregivers Need to Consider...

Greetings,

Lately we’ve been noting how many times people are surprised at a comment or statistic about Caregivers of veterans.  It made us think that compiling several of them might make more of you aware of what people don’t know, and therefore they cannot offer to help you.  So, in the spirit of hoping others may read this (or you can send it to them), here is a brief and incomplete listing – feel free to add to the list!  This just might make your family holidays a bit easier?

1.      “The VA takes care of all medical care for your veteran and you, what are you complaining about?”  (The VA takes care of the Vet’s care and Caregivers receive CHAMPVA or TRICARE depending on service status, caregiver program, and other factors, but not all care is covered for the caregiver.  It can be very hard to find a doctor who takes CHAMPVA or who understands PTSD, so don’t assume life is “easy”.)

2.      “As a Caregiver, you are paid for your work.”  (Not in every case and not at market pricing for commercial caregivers. It is very challenging to explain to others what a "typical" day looks like, but the pay is not why you do what you do, but it helps meet the bills that stress you.  Ask that person to accompany you on your next set of doctor visits; it may open their eyes and their hearts.)

3.      “Besides, s/he’s your husband/adult child, you should take care of them just because you love them.”  (Judgment by others not familiar with your days of constantly being on edge, dealing with a large bureaucracy, trying to apply logic to an illogical system, scheduling countless appointments, juggling 20 medications carefully, and being bone-tired has nothing to do with paybacks for love.  Visible and invisible injuries take a great deal of patience and work to manage with the care team. It’s hard to keep the train on the tracks.  This is why there is a Caregiver program at VA that covers at least some of your needs because it’s fairly obvious that if you all dropped off your vet at the VA that the system would crumble rapidly.  These may be people you don’t need in your life…)

4.      “You should get a therapist if you are stressed or not sleeping.”  (That might be the case, but being a Caregiver is draining and stressful at times, and only a clinician can advise you.  Having said that, talking with your peers or a professional might lighten your load. We bristle when we hear the words "you should"...)

5.      “Never continue the conversation if the Caregiver is in tears.”  (We disagree.  We think this is a perfect time for active listening and compassion.  If you can’t let down with those you’re close to or who need you, they miss out on an opportunity for support.  Be a safe haven for them.)

6.      “Don’t discuss talk of suicide or suicidal thoughts if the Caregiver brings it up.”  (This is an excellent time to compassionately listen, and to also ask if they need other resources and professionals to discuss this serious topic.  If they are seemingly a danger to themselves or others, call emergency services.  If you are unsure, a call to the VA Lifeline would be appropriate to ask what to do for support.  Sometimes, though, just providing a shoulder and a kind ear calms the anxious moment and the almost-crisis moment passes.  However, when in doubt, always reach out for help!)

7.      “PTSD and TBI are excuses for acting like a jerk!”  (Perhaps, but unless you’re a physician and know the background and medical record of the veteran, the symptoms of either PTSD or TBI may not be managed well, or needs may have changed.  Educate yourself on both, and know what to look for when medications are changed or someone is in denial over needing help.  Great resources exist on both conditions, and alternative therapies may work when traditional first-line therapies aren’t working.  No two vets are alike.  No two Caregivers are either.)

8.      “You’re not the one with PTSD – s/he is!”  (Potentially false.  Secondary PTSD or Generational PTSD are the terms used for the cumulative effect of being around those with PTSD and having to alter your normal way of living to accommodate the veteran with PTSD.  Insomnia, hyper-vigilance, walking on eggshells, avoiding surprising someone, isolation, and altered communication may indicate that the Caregiver needs supportive clinical care also.  Again, it helps to educate yourself and your family so they don’t inadvertently trigger a situation unwittingly.)

9.      “S/he’s been back for two years, what’s the problem?”  (War is hell.  People come back from war changed, and they change those around them.  Physical loss doesn’t get easier and invisible injuries are still misunderstood.  There are Vietnam vets who have suppressed their emotions and experiences for 40 years and they suffer still.  There is not a timeframe for “getting better”.  Please do not judge Caregivers or veterans on their issues; judgment is not yours to make.  Offer resources, a gentle ear, and recognize that everyone heals at their own pace and with appropriate care.)

10.   “You need to make time for yourself – you’re running yourself ragged!”   (We think that each and every Caregiver has probably heard this at one time or another.  And, if you have run yourself ragged by always putting others first, then please, ask for and access respite care, a half-day off, or even begin seizing 15-minute intervals to breathe.  Consider that if you fall down, the entire family structure will wobble.  Don’t underestimate your critical role; you are the heartbeat of the family and you matter, so taking care of yourself is critical.  To family members, please keep offering help proactively so that the Caregiver knows you really mean it.  Caregivers are an independent, resourceful group, so coax them to lean on you and be there when they do.)

There are many more, but this posting is long enough.  We wish you a Happy Thanksgiving, and may you have a calm and peaceful holiday.

Linda Kreter & the VeteranCaregiver Team

Moral Injury & PTSD - One Story

Greetings,

We will be talking Tuesday with two cutting edge researchers on the American Heroes Network about Moral Injury:  PTSD and Suicide in the U.S. Military. This term is not often heard, but the stark truth written below may help with greater understanding of our troops' sacrifices and invisible injuries that linger after they return home.  This story was written in 2005 and rings true today (link: http://www.commondreams.org/headlines05/0615-08.htm.

Wednesday, May 04, 2005

IT WAS STILL DARK...

--by Sgt Zachary Scott-Singley

 

It was still dark. I got dressed in that darkness. When I was ready I grabbed an MRE (meal ready to eat) and got in the truck. I was going to go line the truck up in preparation for the raid we were about to go on. The targets were three houses where RPG attacks had come from a few days prior. Sitting there in that darkness listening to the briefing on how we were to execute the mission, I let my mind wander from the briefing and said a prayer. "Just one more day God, let me live one more day and we will go from there..." It was the same prayer I said every day because every day I did the same thing. I left the base. With a small team I would go out each day on different missions. I was their translator.

There were different people to meet each day. There were some who would kill you if they could. They would look at you and you could see the hate in their eyes. I also met with people who would have given me everything they owned. People, that were so thankful to us because we had rid them of Saddam. Well, this day was not really much different from all those other days so far. After the briefing we all got into our assigned seats and convoyed out to the raid site. I was to go in directly after the military police that would clear the building.

The raid began without a hitch. Inside one of the courtyards of one of the houses, talking to an Iraqi woman checking to see if her story correlated with what the detained men had said, I heard gunfire. It was automatic gunfire. Ducking next to the stone wall I yelled at the woman to get inside her house, and when the gunfire stopped I peeked my head around the front gate. I saw a soldier amongst the others who was pulling rear security by our vehicles. This soldier I saw was still aiming his M249 (a fully automatic belt fed machine gun) at a black truck off in the distance. His was the weapon I had heard.

I ran up near his position and overheard the Captain in charge of the raid asking what had happened and why had this soldier opened fire. The soldier kept his weapon aimed and answered that he was sure he had seen a man holding an AK-47 in the back of the black truck. I was amongst the four (along with the soldier who had fired on the black truck) who had been selected to go and see what was up with that truck.

We were out of breath when we got to the gun-truck nearest to the black civilian truck (a gun-truck is a HUMMWV or sometimes called a Hummer by civilians, with a .50 caliber machine gun on its roof). There was a group of four Iraqis walking towards us from the black truck. They were carrying a body. When I saw this I ran forward and began to speak (in Arabic) to the man holding the body but I couldn't say a word.

There right in front of me in the arms of one of the men I saw a small boy (no more than 3 years old). His head was cocked back at the wrong angle and there was blood. So much blood. How could all that blood be from that small boy? I heard crying too. All of the Iraqi men standing there were crying and sobbing and asking me WHY? Someone behind me started screaming for a medic, it was the young soldier (around my age) who had fired his weapon. He screamed and screamed for a medic until his voice was hoarse and a medic came just to tell us what I already knew. The boy was dead. I was so numb.

I stood there looking at that little child, someone's child (just like mine) and seeing how red the clean white shirt of the man holding the boy was turning. It was then that I realized that I had been speaking to them; speaking in a voice that sounded so very far away. I heard my voice telling them (in Arabic) how sorry we were. My mouth was saying this but all my mind could focus on was the hole in the child's head. The white shirt covered in bright red blood. Every color was so bright. There were other colors too. The glistening white pieces of the child's skull still splattered on that so very white shirt. I couldn't stop looking at them even as I continued telling them how sorry we were.

I can still see it all to this very day. The raid was over there were no weapons to be found and we had accomplished nothing except killing a child of some unknowing mother. Not wanting to leave yet, I stayed as long as I could, talking to the man holding the child. I couldn't leave because I needed to know who they were. I wanted to remember. The man was the brother of the child's father. He was the boy's uncle, and he was watching him for his father who had gone to the market. They were carpenters and the soldier who had fired upon the truck had seen someone holding a piece of wood and standing in the truck bed.

Before I left to go back to our base I saw the young soldier who had killed the boy. His eyes were unfocused and he was just standing there, staring off into the distance. My hand went to my canteen and I took a drink of water. That soldier looked so lost, so I offered him a drink from my canteen. In a hoarse voice he quietly thanked me and then gave me such a thankful look; like I had given him gold.

Later that day those of us who had been selected to go inspect the black truck were filling reports out about what we had witnessed for the investigation. The Captain who had led the raid entered the room we were in and you could see that he was angry. He said, "Well this is just great! Now we have to go and give that family bags of money to shut them up..." I wanted to kill him. I sat there trembling with my rage. Some family had just lost their beautiful baby boy and this man, this COMMISSIONED OFFICER in the United States Army is worried about trying to pay off the family's grief and sorrow. He must not have been a father, otherwise he would know that money doesn't even come close... I wanted to use my bare hands to kill him, but instead I just sat there and waited until the investigating officer called me into his office.

To this day I still think about that raid, that family, that boy. I wonder if they are making attacks on us now. I would be. If someone took the life of my son or my daughter nothing other than my own death would stop me from killing that person. I still cry too. I cry when the memory hits me. I cry when I think of how very far away I am from my family who needs me. I am not there just like the boy's father wasn't there. I pray every day for my family's safety and just that I was with them. I have served my time, I have my nightmares, I have enough blood on my hands. My contract with the Army has been involuntarily extended. I am not asking for medicine to help with the nightmares or for anything else, only that the Army would have held true to the contract I signed and let me be a father, a husband, a daddy again. 

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 

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

Leadership: Do They Know?

Good morning,

Here’s a question for you that we have been asked no less than 11 times in the last two weeks:  “Do you feel the leadership (DoD, VA, service branches, Caregiver Coordinators) truly understand what Caregivers experience?”

This is a volatile question, to which I give no answer, but listen for the occasion that elicited the comment.  There is great frustration by Caregivers that we hear often, and I think it boils down to this:  Leadership is shielded from the family caregiver experience.  We believe there are good leaders who care, but there are many surrounding them who keep controversy from their bosses.  Is this good?  In our opinion, no.  For without real observed examples, the leader is not leading with the right information.  And, can you fix something if you don’t know it is happening?  No.

Daily living essentials matter.  For a month recently, there was no hot water at one of the residence barracks at Walter Reed.  For a month.  Despite many mentions of this problem at group meetings, it wasn’t until the problem was quietly researched that progress was made.  The contractor, subcontractor, and sub-subcontractor were contacted to ensure the event was reported appropriately to maintenance and afterward, the resultant mixing valve issue was solved.  See, once they knew, proper process was followed and problem resolved. Hot water is pretty necessary for health and hygiene, wouldn’t you say?

Invisible Injuries are still invisible.  A caregiver at a recent VA appointment was asked “Why aren’t you looking for a job?  He’s doing so much better,”.  She then explained the severe lack of short term memory for her husband that nearly resulted in a home fire catastrophe the previous week.  Better yes, but good enough to leave unattended and take on a job?  No.  The doctor doesn’t live with your veteran 24/7 – you do.  See that the record reflects the reality of your experience.

We suggest this to you.  Respectfully note and bring real-life caregiving challenges to your appointments and town hall meetings.  Unless leadership know about them, they cannot research situations or make changes.  And, if they are not amenable, or there are repercussions, there is help.  We must collectively raise the visibility of caregiver experiences to bring about positive change.  Share your Caregiver challenges (and wins) in order to make it real.  Together, let’s help leadership to lead!

Linda 

Awareness is Key!

Greetings, friends,
        We send you a rallying call today:  keep sharing the vital role of Caregivers in the Continuum of Care!
        We never use those words glibly:  Continuum of Care.  Caregivers know it is by their actions and commitment that compassionate care supports our brave injured, ill, or wounded troops.  We know that you are the essential backbone of that care, and that your crucial role is often overlooked.

        Recently, more serious media attention has been given to warriors, veterans, and their Caregivers.  After the September 27th NY Times article on Veteran Caregiving, the CBS News  evening broadcast included a piece on Warrior Caregiving on October 7th (above photo, video to follow).  On Saturday, Pamela Eggleston of Blue Star Families and I participated in a panel discussion regarding women veterans and service family needs, including the value of Caregivers in recovery (below).  Very tough topics such as MST (military sexual trauma or rape/assault), equity in benefits for Guard/Reserve, and the evolving VA medical system to address women's issues were discussed, and Caregiving needs resonated with the attendees.

        We are spending significant time talking with DoD and VA leadership about proactive assistance and timely follow-through.  There is unfortunate bureaucracy in managing chronic pain, depression, invisible injuries (PTS and TBI), family health issues, and comprehensive care plans.  Suicide prevention will always be a deep concern.  As you are aware, under the "feel good" stories are unresolved darker stories that may follow if we do not keep assertively sharing service family challenges and casting light into the dimmer corners.  

        In short, we appreciate you and your commitment.  Maya Angelou said this:  “There is no greater agony than bearing an untold story inside you.”  Tell your stories and shine the Light !

Linda

PS:  Even our foreign counterparts are requesting briefings about the role of Caregiving in reintegration after injury.  Let your voices be heard!

New Blog for TBI Caregivers!

Greetings, friends,


A very special member of our VeteranCareGiver community has just launched a personal blog about caregiving for those with TBI.  It does not matter whether you are a spouse, parent, friend, or other family member, chances are good that you will identify with many of Annette's observations.  You may find the blog at www.spouseoftbiveteran.blogspot.com.  Annette also has a very poignant video on the homepage of VCG and we applaud her efforts to support and spread awareness of the challenges of caregiving for the invisible injuries of TBI and PTSD.


Brava, Caregivers!


Linda