Women's History Month & Women in Military Service for America

Hi all,

In a ceremony on March 14^th, MG Jimmie O. Keenan, commanding general, U.S. Army Public Health Command spoke about the vital role of women in the military, while spotlighting Women in Military Service for America at Arlington National Cemetery.  Stunning strides have been made in a relatively short time to offer women leadership and crucial responsibilities in the armed forces, including the appointment of LtGen Patty Donoho as the first female Surgeon General of the Army.  Glass ceilings may be broken for good, strong, intelligent women!

During the same ceremony, one of our favorite wounded warriors at Walter Reed, SSgt Stefanie Mason, spoke about the influence of strong women in her life, citing first her grandmother (a Navy nurse), and then her mother, Paulette Mason.  Stefanie, who sustained nine head fractures, TBI, and a severe leg injury in Afghanistan is now hoping to compete in the ParaOlympic Games in London for gold in swimming.  She has come a very, very long way from her Alive Day.  Stefanie credited her mother’s caregiving with aiding her recovery, and also her ability to move forward successfully in her life after her injuries. As you know, as Caregivers, you shoulder not only the physical rehabilitation, but the mental health of your warrior – while also keeping the rest of your life in order as best you can.

Best of all, though, was the recognition during this ceremony provided by MG Keenan to Paulette Mason as a Caregiver.  General Keenan asked first that Paulette stand up in the auditorium.  She then singled her out for her caregiving dedication and commitment with these words:  “Mothers are an integral part of our life, and in the case of a wounded warrior, the role of women with their unique ability to multi-task, to support, and to love is so important.  What is more precious to a mother than her child?  Thank you for sacrificing your daily life to support your daughter and our soldier”.  Similar words would be appropriate for the rest of the spouses, fathers, siblings, and friends who also shoulder warrior and veteran caregiving. 

Please join us in joy that when one Caregiver is recognized, the Caregiver Role itself is highlighted.  We applaud General Keenan for her thoughtful words, Stefanie Mason for her dedicated fervor toward recovery, and we give a special shout-out to Caregiver Paulette Mason.  We welcome writing about any of you who are recognized, and thank you for your continued daily work and sacrifice.  

The article link is below.  You matter.

Linda

http://www.army.mil/article/75741/ 

The Value of the Written Word

Over the past few weeks I have received a lot of mail from various people in pretty high positions in the Government and the military as well as in various business categories. I have noticed an alarming trend in many of these which is to ignore writing errors. Spelling has flown out the window; punctuation is so bad that in some cases it is almost impossible to know the intention of the writer; and often they change tense or subject within the same sentence. I know we all make occasional mistakes, but for the most part, these are a one-off error. One error in message can be overlooked, twenty such errors are just careless and to my mind disrespectful of the recipient.

I know from my many years as a writer and an advocate that to be able to write a good and coherent letter, regardless of whether it is in the form of an email or snail-mail, makes the best impact on the reader. When mistakes are made, sometimes glaring mistakes, it lowers the credibility of the writer. Years ago, before we had computers to do so much for us, we relied on a dictionary and our own skills from our school days. There was then some excuse for poor writing skills, as not everyone had the advantage of good schooling. However, there is little excuse now, as even the most rudimentary word processing program has a spell checker and some type of correction for correct syntax.

The point I am making here is that in communication with anyone, either at the VA, the DoD or your Congressman, good writing is essential if you wish to appear a competent caregiver. I understand that for some, dyslexia or English as a second language may be a problem. However, you should be able to find someone to proof read your mail before risking sending something which is full of errors of spelling and grammar.

I do attribute this, in part, to the amount of texting and chat room use, where people tend to ignore mistakes. However, I am not talking about these relaxed and social interactions. For a formal communication, much more care needs to be taken if you are going to appear credible. As valuable advocates for our Vets it is important we do all we can to make our point clearly and concisely.

Updates for Caregivers of Wounded Warriors & Veterans

Hi all,

Today was the MOAA/Zeiders Roundtable meeting and the topic was Part II of discussing Caregiver and Family issues for Wounded Warriors and Veterans.  Leadership from the VA and DoD were present to respond to questions on care, caregiving, and benefits.  Below is much of the information gleaned from the meeting, and it’s evident that providing support for Caregivers and families is an ongoing challenge.

This meeting centered on questions raised by the group and specifically the five Caregivers or Veterans present.  Some overall themes are recurring and familiar to you:

• Caregiver support after-hours and on weekends is problematic.  (In other words, if the FRC/RCC/CG Coordinator is not available, who do you call?)  FRC’s are not responsible for after-hours support due to their patient load, and this program receives good reviews with the 25 FRC’s assigned to seriously wounded warriors and veterans. 
•  The onus is on the Caregiver to seek answers if dissatisfied with any aspect of care, which is very difficult when you’re exhausted and lost
•  Peers are still the most trusted group to support other Caregivers (yep, we surely know that!)
•  Clinical Retaliation/Repercussions often occur when Caregiver dissatisfaction is reported – which is often why it’s not reported
•  Caregivers are frequently blocked from participation in the medical appts of their Vet, especially in emergency situations despite the change in law; some discussion centered on how to solve this with special identification, cards, or training, but this problem lingers as many of you have experienced
• Where is the Retirement Ceremony for our medically discharged troops?  Too many casually receive a flag, a pin, and a form letter for their service. This was viewed as a fixable issue and monthly retirement ceremonies were discussed.  Hopefully this will occur soon and retroactively.

Additional questions centered on the complexity of earned benefits and being properly informed at the appropriate time to make good decisions: 

• Fiduciary issues are often confusing due to the State vs Federal sovereign issues (who’s in charge by law) and improved coordination of the various agencies would assist in accurate information about earned benefits.
• Questions regarding Guardian or Incompetency ratings may be resolved by the local Surrogate Court (seek legal assistance on these complexities)
• If your Vet has a 10% or more disability rating and an Honorable Discharge, they are entitled to Vocational Rehab (a VBA Benefit) and the entitlement amount is based on the service-connected needs.
• Volunteer work or some part-time work earning up to $850 annually does not effect your SSDI payments (Social Security payments)
• Reduced work tolerance does not preclude receiving the full subsistence disability payment (contact the VBA for more information) 
• For a Vet needing a Job Coach, this may be requested from Voc Rehab
• The MEB/PEBLO (medical evaluations) are being evaluated for three criteria:  (1) Is the rating fair?, (2) Is it timely?, and (3) Is it Sevice-Member centric. There is a tension here:  the two-part evaluation permits for appeals if there is a disagreement by the Vet, but it does incur additional time; further study is ongoing at DoD.
•   RCC’s (Recovery Care Coordinators) are now assigned to 400 Active Duty warriors.
•  Additional RCC’s will be trained, beginning this Sunday, March 11^th, and there is still poor awareness of RCC assignments.

 A holistic or comprehensive approach is needed to address thorny problems that still occur after 10 years of war, and the bigger picture of setting expectations for warriors and Caregivers to understand their benefits, financial options, educational options, employability and more is an ongoing task for those training RCC’s.  Caregiver involvement is critical and recognized by this group, while improvements in the TAP transition program is expected to improve knowledge about transition.

We continue to seek improvements in communication, parity in care across the country at medical centers, and ongoing discussions of the reality of Caregiving.  We did not hear discussion of Comprehensive Care Plans or Comprehensive Transition Plans today, but certainly you see that much was under discussion today. Please let us know your priorities and needs, and we’ll continue to add your voices to the future meetings and collaborative efforts to improve service family quality of life.

Kind regards,

Linda 

Caregiving is Not a Competition

Greetings, friends,

Caregiving is one tough job.  It’s not for sissies.  And, you go through so much that many others could not possibly understand unless they experienced it themselves.  There is one thing though, that we hope we might shed light on here, and that is your caregiving is your challenge, and it’s impossible to compare it to another family’s challenge. 

So many of you have spoken or written that “I don’t want to complain when so-and-so has it so much worse”.  Or, “if I have a good day, will it make others feel worse?”  What if you know someone else’s situation is so serious that they might not have a good day for a long time, if ever?  If you are caregiving, there’s a reason.  Please know that it’s natural to make a comparison of situations, but not one that makes you feel badly or restricted in what you say.  If that happens as an ongoing pattern, it might be a good idea to distance yourself from that person. 

We care about each of you going through your days, and we are grateful for the depth of compassion shared here.  It is natural to wish you had different lives.  There are always going to be those who “work the system”.  But the vast majority of Caregivers and veterans are simply trying to make it through their days seeking improvement in quality of life an hour at a time.  And, at the same time seeking peer support that inflates rather than deflates you.

Caregiving is not a competition and there will always be differences in doctors, hospitals, clinics, community resources and more.   We all learn and grow with the peer support you provide when sharing your lives with us and each other. Please don’t burden yourselves further by carrying the torch at the Guilt Olympics; we care and you matter.

Best always,

Linda

Missed Appointments & Records . . .

Good afternoon,

This is not a new topic, but two things have made up the bulk of calls this week from Caregivers:  (1) Appointments cancelled by VA, but not communicated to the Caregiver or Veteran, and (2) The written medical record account of the same incident. 

In our view, communication is nearly everything.  It is about logistics, use of resources, and most of all, respect for everyone's time.  When a veteran misses an appointment, it is often characterized as a serious problem and the record reflects notes such as "Veteran refused treatment", "No show", "Missed appointment".  Fair enough.  But, when families drive hours to a series of mental health appointments and arrive to discover that the physician is absent for any reason, it presents a bigger problem for all concerned.

Veterans in most cases are trying to become well.  Caregivers are working hard to manage appointments, travel, logistics, and most of all their veteran.  Surprises are not welcomed by those with PTSD.  And, to find the medical record later reflecting an inaccurate assessment - well, that isn't a good faith effort.  It comes as no surprise to us that many of the more desperate phone calls focus/obsess on the slap of an unfair record of a simple mistake. Let's face it, mistakes can be made and "oops" moments do occur. However, a simple apology and a confirmation text, email, or call would be welcomed.

The provider isn't perfect, but may we caution that the provider may need to step up their communication and customer service efforts?  And, Caregivers, a quick call to confirm before driving hours might well be advised.  Courtesy just might become contagious!

Linda

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 

White House Caregiver Event

Greetings!

On Monday, January 30^th, we were privileged to join the First Lady at the Department of Labor as she announced proposed extended benefits to Caregivers of the nation’s wounded, ill, or injured service members and veterans.  Many Caregivers and vets from VeteranCaregiver were present, as well as many of the Caregivers and service members we assist at Bethesda.  To have these amazing Caregivers in one room together was a rare opportunity for face to face camaraderie! 

Caregiving is not sexy. The role of Caregivers is very hard to define to the general public.  It is not a photo op with a service dog or a golf tournament.  It is instead, a quiet, relentless, worthy, and necessary adjunct to recovery for our service members and veterans.  It takes courage, passion, strength of purpose, and grit to navigate the complex medical system, and to advocate and coordinate efforts for their family member every single day.  The recovery continuum is unimaginable without Caregivers.

This event signified the importance and priority of Caregivers in a quiet, but powerful way by the attendee list, and joining the First Lady were: 

-      The Secretaries from the Departments of Defense, VA, and Labor

-      The Secretaries of the Army, Navy, and Air Force, and

-      The Chairman of the Joint Chiefs and all the members of the Joint Chiefs of Staff.

Specifically, the First Lady spoke of a proposed rule to extend the Family Medical Leave Act (FMLA) to qualifying family members of veterans dealing with a serious injury or illness for up to five years after leaving the service.  This is a change from supporting only family members of “currently serving” service members.  This proposed rule would also cover those in the regular armed forces instead of the current entitlement for only those in the Guard or Reserves.  And, addressing one of the most critical challenges facing Caregivers, Mrs. Obama also spoke of new programs to address critically high unemployment among Caregivers and veterans by announcing 14 hiring fairs with the Chamber of Commerce, including one to be held at Bethesda.

Caregiving defines love in new ways under new circumstances.  And, most Americans are completely unaware of the significant, vital role that Caregivers fulfill day in and day out.  We hope that this event will be the beginning of recognition of the essential role of Caregivers to our service and veteran families.  As always, honor and praise go to all Caregivers, you are recognized daily by this VCG Community!

Very respectfully,

Linda