The Person Behind The Wheelchair: Who Cares for The Caregiver?
When the pictures are taken of the wounded service member meeting this official or that celebrity, who is standing behind the wheelchair? Who takes care of the wounded for years and years? Who is there every day? Who takes them to every appointment while holding the rest of the family together? Who usually ends up giving up their job to become a full-time caregiver? The family member, the caregiver; that’s who. The spouse, the parent, sometimes a sibling. But the question also has to be: who takes care of the caregiver?
When a service member is wounded, after the initial weeks of hospitalization with constant care by teams and platoons of nurses, therapists, medical professionals of every persuasion, who are there to help with every possible need, the long term recovery phase begins. This is when the family member, who has already been spending weeks at the bedside, assisting the wounded service member with everything from decisions about care, painstakingly hand-feeding them, talking to the doctors, learning what to do about dressing changes and handling the acres of paperwork: this is when they become the main caregiver.
Then what? The answer, as told by two women who were featured in the New York Times, is a mixture of love, joy, anger, exhaustion and sacrifice. Rosie Babin gave up her job, gave up the life she and her husband planned, to spend each and every day caring for her son who was wounded in Iraq and who the Army wanted to put into a nursing home. April Marcum, who attended the recent Defense Forum in DC, talked about how much her life has been altered. In both the NYT piece and at the Forum, she told us that she’s lost the man she married, her best friend. He’s not the same Tom, his body is there, but he is a very different person. An online friend has described it as having her life turned upside down, and not able to get back to anything approaching what she used to call normal.
The “New Normal” includes trying to figure out how to make ends meet. There is a huge gap between the perception that most have of Medical Retirement, and the reality. Perception: quick, easy and thorough review that immediately provides the information needed for an orderly transition from Active Service to Military Retirement and the VA. The reality: that it takes months, sometimes years to get all the medical documents, the corrected, re-corrected and re-re-corrected applications, the determinations of disability by this agency and that; the insanity of an Army Doctor refusing to take the completed physical exam form because “it’s an Air Force form” and the frustration of waiting for hours on hold, to be told that they are talking to the wrong person, the wrong department.
So while they wait for the determination of disability, they go through their savings, they borrow from family members, they rely on the kindness of organizations. While they wait for the caregiver stipend that is supposed to be awarded to that family member without whom the veteran could not survive, with its myriad rules and applications, they hope that they can manage to pay their bills as their credit cards max out.
This “system” needs to be fixed. The VA and DoD claim that they are streamlining this “system,” that the disconnect between the two medical systems will be rectified, that they will actually be able to digitally transfer medical records which currently must be printed into hard copy and then rescanned into the VA system. However, in this time of budget cuts, will these efforts be deemed to be critical? Will the American people realize that those wounded in their service (and this is NOT the place to argue the validity of the conflicts) deserve treatment, deserve the promised benefits? These are not entitlements, they earned these benefits with their service.
The caregivers deserve our respect; they deserve to be treated with respect by those in authority; they deserve to be supported and assisted. They earn that respect, every minute of every day.
Photo: courtesy of M. Hughes, by permission