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Wednesday, June 22, 2011

Let's Talk About Your "Wingman"

Being the recipient of an LVAD is not the only way to go through life, with the emotional challenges (as well as physical) thrust upon us in such a hurried manner.  As primary caregivers you will experience, first-hand, every ounce of those challenges as closely as the recipient themselves.  Sometimes your challenges will be greater than their's, because you not only have to worry about doing the right thing for the recipient but also the right thing for your families and yourselves.  The major obstacle is to figure out how you (the caregiver) are going to overcome, adapt and improvise (to borrow a phrase from the Marine Corps and Clint Eastwood (Heartbreak Ridge, 1986)).

Big Bang Theory's "Wingman" clip

I would not be presumptuous enough to begin to give you an "instruction book" on how to be a "wingman".  I have no degree in psychology, family counseling or any other credentials that would make me worthy to do so, and my On the Job Training (OJT) is in it's infant stages.  Besides those particular facts, everybody's experiences and personalities are different and as individual as snowflakes.  How can I possibly tell you how to hang onto your own identity when sometimes I feel like I have lost my own?

Here seems to be the top 3 fears we wingmen have the most:
 1.  Feeling trapped and having an inability to sleep because you are concerned about your "ward".
 2.  The fear of doing just one little thing "wrong" and make healing/recovery harder (or impossible) for our "charge".
  3. Scared to death you will not know "how to intervene" should something "malfunction", no matter how much training you've gone through.

To the people that did this study I say, "DUH!!!!!!!!!!!"  I'm wondering how much that study cost them? (Findings from:  Cardiac Assist Devices, Daniel J. Goldstein, Mehmet Oz.  Chapter 14:  Quality of Life Issues Associated with the Use of Left Ventricular Assist Devices, Peter A. Shapiro, M.D.)

What I have learned from fellow "wingmen" and recipients is that everyone's experiences are different and, interestingly, everyone's geographic location holds different "bags of tricks".  Some change dressings daily, and some every 4 days - and not everyone uses the same equipment, not only for dressing changes but for daily use.  Recommendations from clinics are as different as there are days in a month.

The most major point of this blog chapter is that since our journey's beginning, the cyberspace LVAD world has grown rapidly, and connecting to all of these fantastic resources is a major goal of ours.  If you deal with LVAD (in any way shape or form), or have in the past, help us all out by contacting us - and giving us your "wealth of knowledge".

On May 3, 2011 the Veterans put out the following press release, announcing that they will start paying caregivers, even if they are immediate family:


VA to Take Applications for New Family Caregiver Program
VA Implementing Enhancements to Existing Services
for Veterans and Their Caregivers


Although this applies to post-911 caregivers, I'm hoping that they will recognize the rest of also.  I have attached the link to the letter here:  http://www.va.gov/opa/pressrel/pressrelease.cfm?id=2088

To all the LVAD Warriors out there - Have a great day!!!!!!

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