Who Will Care For The Caregiver?

On April 19, 2005, Debbie Schulz of Friendswood, Texas, got the call every parent of a service member in Iraq and Afghanistan dreads. Her child had been wounded. When she hung up the phone, in shock, all she knew was that her son was considered to be “VSI”, an acronym that she would later learn meant: “very seriously injured.”

More than 48 hours later Debbie began to learn some of the details. Her beloved eldest son, Steven Schulz, a Lance Corporal in the United States Marine Corps, had been patrolling Fallujah, Iraq when it happened. His unarmored humvee was hit by a roadside bomb, a mortar shell cleverly built into a concrete curb in order to elude detection. Insurgents remotely detonated the device and within the fraction of a second, thousands of pieces of shrapnel penetrated the vehicle. One piece of metal shrapnel flew into Steven’s face near his right eye and lodged in his brain. Doctors told the family that he had sustained a severe traumatic brain injury and devastating damage to his right eye. Steven was paralyzed on his left side, lost most vision in his right eye as well as peripheral vision in his left.

Within 72 hours after their son’s injury, Debbie and her husband Steve rushed to Steven’s bedside at the National Naval Medical Center in Bethesda, Maryland. Packing only a small suitcase, Debbie could never have known that she would not return to her home in Friendswood for nearly seven months. Steven was in intensive care for 32 days and in June of 2005 he was moved to the Veteran’s Administration Hospital in Tampa, Florida. In order to be at Steven’s bedside around the clock, Debbie initially took a leave of absence from her job and ultimately had to resign her position, as so many in this situation do. Debbie had a new job–that of caregiver – an undefined role for which no one receives training. And yet more than 45 million of us in this country have stepped into those shoes.

At the VA Hospital in Tampa, Debbie found herself alone and without a strong support network nearby. Her husband needed to return to Texas to get back to work and without Debbie’s supplemental income, the family began to dig into retirement savings in order to continue to make ends meet. Finally, she demanded that her son be moved to a treatment facility close to home so that he would be able to re-integrate into their family and community.

Once there, Debbie and Steve began the long, frightening journey to wait and watch their son recover. The first step was healing from the acute wounds and then they began the slow and painstaking crawl of daily rehabilitation to try to regain as much of Steven’s former self as possible. But as time passed, Debbie realized that if they only “waited and watched” rather than strongly advocate on their son’s behalf, they might never see Steven reach his potential. They became determined to see some resemblance of the young, bright-eyed boy they had raised.

Steven is the eldest of three children. Steve was a national sales manager and before her son’s injury, Debbie had been a thriving and successful local high school teacher. Like most families in America, theirs was a life full of blessings combined with its share of challenges and rough patches. At first, Debbie was apprehensive when her son joined the Marines, but Debbie and Steve were proud that their son had chosen to serve. Steve had even founded a non-profit called “Supplied to Survive,” that lined up much-needed items such as GPS devices, rifle scopes, thick gloves, etc. for shipment to the troops in Iraq.

Debbie Schulz

Like so many caregivers, Debbie has led the charge on the family’s journey to recovery and she has managed to keep her family together in the process. Debbie fought very hard to receive state of the art cognitive rehab and other rehabilitative therapies at a civilian hospital in Houston. And she continues to navigate through the red tape of our governmental system. Due to her efforts and the hard work of Steven himself, he has regained some use of his left leg, uses a walking stick and can perform most of his daily living activities. Steven is integrated into the community, volunteering and taking classes locally.

But here is where Debbie exemplifies so many caregivers I have met. She didn’t just stop with her own son, as much as she had on her plate, Debbie went on to ensure that other service members would receive the same care she had fought so hard to win for her own child. She has worked tirelessly and traveled with Steven to Washington in order to fight for better funding and expansion of benefits and entitlements for injured service members and their families. Her dedicated efforts were instrumental in ensuring that patients had opportunities to receive treatment close to their homes and as a result, changed the way the Houston VA partnered with civilian treatment facilities to treat traumatic brain injury patients.

As a mother, a wife, and the center of the family by nature, Debbie holds it all together, some days, she would admit, just barely. Like so many female caregivers especially, the burden of care for their two other children and the household falls largely on her. The toll on a family is not to be underestimated. Debbie is the thread that keeps it all together and she pulls it taut in order that their home life doesn’t unravel. It is an effort that continues without a break, without a vacation from stressors.

Debbie is my definition of a true caregiver, compassionate, kind, articulate, educated, passionate, and a selfless person who has given every ounce of energy to improve her son’s outcomes and those of other injured service members. With Debbie’s constant care and dedication, Steven has worked hard to become more independent.

In the words of her son: “My mom is the strongest, smartest woman in the world” — she has and will continue to carry him through the tough times.

Each Veteran’s Day we spend a great deal of effort honoring those who have served. And rightly so. But this year let’s also honor the loved ones here at home, like Debbie Schulz who serve every day in unsung roles. It is up to every one of us to support, care for and assist those caregivers. You can learn more at www.remind.org.