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