Thursday, August 18, 2011

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!


Friday, August 5, 2011

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.


Tuesday, August 2, 2011

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  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!