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!

Peer Networks & Suicide Prevention

Greetings, friends,
          Yesterday I had the opportunity to talk to an influential group about the value of peer networks for suicide prevention.  It's readily apparent that the integrity of any support program is demonstrated with building trust in every interaction. It was a relief to share your thoughts (provided to me over time) and perceptions of the official tools and processes in place.  My hope is that there was greater understanding following the meeting.
         It's sometimes possible to feel alienated from leadership because of well-meaning gatekeepers.  Provided the opportunity to share directly with leadership was refreshing -- and daunting.  We are not clinicians, but we DO care and support.  And, you've proven time and time again, that helping others helps you.  I know it does for me. We now have more tools in place, and also an agreement with the Veterans Crisis Line to provide a "warm transfer" should you wish help in placing that call on your own. We're with you!
        Regarding my blog post of last week about a caregiver outreach piece, the piece has been delayed and I will have it for you next week.  Once I receive a copy, you will have it first thereafter!
       Make it a good week, and When In Doubt, Reach Out!


Linda

Courage

Hi friends,
      This posting is very brief, but I wanted to highlight a quality that we have seen exemplified on VeteranCaregiver over and over again: Courage.

• Courage is the integrity to continue your caregiving mission though it often seems no one cares or notices.
• Courage means putting one foot in front of the other even when you question whether you have the strength.
• Courage is picking up the phone to leave yet another message, though you're unsure it will be acknowledged or returned.
• Courage is pressing past the bureaucracy or pettiness of perceived power.
• Courage is researching, questioning, seeking the best possible care for your veteran or warrior.
• Courage is fighting through the brain fog to think and reason.
• Courage is reaching out and asking for help. For support.  For solace.
• Courage is knowing that you and your veteran matter -- and that others know your heart.      

We are honored to be among Caregivers, Veterans, and Wounded Warriors who exemplify Courage.


      Hold tight to your Courage, because on Friday, you will have a voice through one of our Caregivers on a national scale.  We think you'll be very proud of your fellow Caregiver, and the opportunity to be heard. The veil of invisibility will lift, and your cause will be known.


      Stay tuned, and blessings to the men and women of Courage!


Linda

Suicide Prevention Month

Greetings, friends,


Through all the summer turmoil of torrid heat, tornadoes, floods, earthquakes, and a hurricane, and personal crises too numerous to mention individually, we now arrive in September, or Suicide Prevention Month.  What does this really mean? 


All too well, we know that Suicide Prevention is a constant and active choice.  It happens hour by hour, day by day, by those who care.  So many studies now affirm that caring peers and friends can help others to choose life over the very final decision to take their own lives.  Nearly all in this VCG Community can attest to the day a VCG Hug arrived at a crucial moment, someone took the time to reach out when silence was noted, and a call or email was sent or received that lifted spirits and made you feel cared for and about. With crisis, depression, or fear -- a caring word or thought can change an otherwise desperate outcome.


There are many, many official tools in place:  suicide hotlines, crisis helplines, online chat, and service branch programs. Valuable tools with the emphasis on the person in crisis taking that first step.  Other programs permit friends and families to identify and encourage obtaining help.  Yet, what about the simple act of situational awareness and realizing that you haven't seen or heard a word from "Jane" online/offline in a few days?  The gentle proactive outreach that says "I noticed you've been quiet; are you alright?"  There are countless occasions that accomplished the miraculous - this online community cares, and it shows.  


Bob Delaney's new book, "Surviving the Shadows" speaks of peer support as the most powerful tool available following trauma or crisis.  We agree wholeheartedly.  So, as this September enlightens many to greater awareness of noticing or identifying anguish, depression, and suicidal thoughts, please know and appreciate how YOU hold each other up, lift spirits, and give hope to those that feel or felt hopeless.  


Let's keep on caring, and reaching out to each other - you might matter to someone else more than you'll ever know... We care and it shows!


When in doubt - reach out!


Blessings and thanks,


Linda

To Complain or not to Complain, that is the Question

Borrowing a line from Shakespeare totally fits the dilemma that we have when dealing with the VA. When we get less than desirable treatment or when we have to deal with something which is dangerous or life-threatening, do we dare to complain?

Many who have made a complaint have been retaliated against. They have received even less care, have been told they are lying or that they are causing the problem. Entries are made in medical records which is difficult if not impossible to have removed. All of this allows the VA to put the blame on the patient or the caregiver and frees them from the necessity of dealing with the problem.

On the other hand, if we do not make a genuine complaint, we are left dealing with the fall-out of the lack of care. As usual, it is often the caregiver who deals with fall-out, which adds another layer of burden to a person who is already burdened beyond belief.

No matter how politely we make our complaint, no matter how much we follow protocol, no matter who we talk with and no matter how many people promise things will change, they rarely do for the better. The VA and the level of care appears to be in a downward spiral. As the current deployments come to an end, and our troops return, the pressure on the VA facilities will increase. In my opinion the level of care will decrease with the increase in patient load.

I have no answer for the issue of complaints, as it is a double edged sword. Every family must make a decision based on their circumstances and knowledge. No one should be penalized for complaining about lack of appropriate care, no one should be treated with disrespect because they do not fit the on-size-fits-all that the VA protocols are written for. What I do know is that this is an extremely unfair burden to place on both Veterans and those that care for them.

Have You Experienced 'The Shrug'?

Greetings, friends,

If actions speak louder than words, it appears the road ahead is rocky indeed. However, there IS hope if we persist in idea exchange and candid communication.

In this context, The Shrug is the non-verbal equivalent of "whatever". Every example below comes directly from VCG families.  Do you recognize any of the following examples of The Shrug as you've traveled the Care Continuum? 

You're a caregiver for an active duty service member (DoD side) and after a year, you don't have a stable Triad, you are chastised for missing appointments you didn't know about, and you work to dress your soldier with severe pain and depression for morning formation, and when you ask why? Shrug.

As the Caregiver, you're moving into the rehabilitation phase of the service member's injury. You have no Comprehensive Care Plan, your daily load is very heavy, and you're living at the hospital/medical center with your spouse, adult child, sibling. You may be a single service member and you lack a Caregiver to advocate for you and your visible and invisible injuries. Both of you ask for help or resources that don't function as the brochure, website, or briefing said they would. Shrug.

As the Caregiver, you're trying to make ends meet, you've lost your job (by email), the household bills don't stop, and you're full-time caregiving while living away from the home you're trying to keep, children who need to start school in a week, and you ask for assistance. Very little exists unless you fit a particular set of circumstances for a specific NPO. Shrug. If you are in the DC area, also get ready to move with your service member to a new facility where you begin anew and now need to carry a map along with the new staff. Shrug.

As the Caregiver, you're finally home and in the VA system, your Vet has serious medical and emotional conditions and you know you cannot work, nor are you finding it smoother to communicate with the new medical professionals at the VA Medical Center. You're still requesting a Comprehensive Care Plan... You are now an expert at leaving voicemail and writing succinct emails. Shrug. The bills continue to mount, the ratings and funds are greatly delayed, your family wonders why you put up with your spouse or child's now-unfiltered behavior (PTSD/TBI), and your neighbors forgot you after the welcome home cookout. Shrug.

As the Caregiver, you're home after a serious suicide attempt by your Vet, you have sheltered your children or other family, but now those invisible wounds of war are exposed -- and you're really very scared and scarred yourself. Your calls to various coordinators are not returned for many days and when they are, they are either unable to assist or cannot until/unless you fill out more or duplicative paperwork. HIPAA is used as a barrier when you hold the medical and general POA's for your Vet. The helplines you call refer you to your local facilities, but you've already been down that road, or why would you call them? Shrug.

Continuing on, your Veteran is angry and depressed at the caregiving toll on you. Or, the Vet could also be angry with you for not making their world what it once was. (BTW, no one could ever fit in those tight shoes...) Personal counseling is impossible to schedule with your caregiving responsibilities, though you now feel as though you have secondary PTSD/anxiety/depression. Your world is closing in on you and you're merely coping, numb, or ready to quit. You have enlisted a good VSO, your state Dept. of VA, and your U.S. Senator and Congressman, and the machinations still go in a circle. You are adrift, feel overwhelmed, a wee bit furious, and very, very exhausted. Shrugs aplenty.

You're a single Veteran and you have done your level best to find a way to quietly obtain information, care, and resume your life to the best of your ability. You advocate for yourself and you feel isolated and forgotten. You may have experienced MST, homelessness, loss of your buddies, your ability to return to work or school, and you aren't sure who you really are anymore. Unreturned calls, ignored pleas for help, and a shrunken world only reinforce your perception of being "disposable". Shrug?

Most of life's successes result from great communication. So too the worst failures.

Let's replace The Shrug with respectful, two-way communication and understanding, shall we?  With open minds, logic, and compassionate care, this change is very possible.  Here's working toward that change together!

Linda

WarriorCare and VeteranCare - Caregivers Need Your Support

Greetings, friends,


I'd like to draw your attention to the upcoming move of the medical facilities from Walter Reed to the new Bethesda and Ft. Belvoir facilities later this month.  This week we met with a number of families who are dealing with grueling recoveries, financial situations, emotional upheaval, and now have a difficult relocation to manage. 


While new improved quarters are looked forward to, the preparations and the communication over the move has been challenging for these families.  As many of you will remember from the early days of wounded recovery, your focus was on your service member.  So too is theirs.  Please keep these Caregivers (or NMA's, Non-Medical Attendants) in your thoughts and prayers while this is experience is still raw and fresh in their minds. While change is inevitable in this case, it is also frightening and disconcerting to the injured service member - and an added burden to the Caregiver.


Thankfully, Caregivers continue to support Caregivers, and if communication and education is accomplished on the DoD side of the continuum of care, entering the huge VA system of care is somewhat smoother.  We are working hard to provide help to Wounded Warrior families at Walter Reed, and you've probably noticed that VCG is attracting active duty families to our ranks as well as veterans. Our goal is to divide VCG into a sister entity called WarriorCare to address these two major phases of care in the near future. Thank you for welcoming all in our midst, for our goal is to educate, advocate, coordinate, and navigate the various phases of the continuum of care with you.


Linda