“His care was exceptional and his passing was peaceful. They respected him till the very end and continued to support me in my grief.” When my father, an 85-year-old World War II veteran, died following two years of treatment for terminal cancer, my caregiving mother praised his Veterans Affairs hospital treatment and the support given her.
Sadly, her experience is seldom fully reflected in the testimony of the caregivers of Operation Iraqi Freedom (OIF) and Operation Enduring Freedom (OEF) veterans whose wounds, illness or injury are fresh and whose lives become forever changed at a much earlier age. As the 2011 comments of a Marine mother make clear, theirs is a different story. “[Traumatic brain injury] affects the whole family for a very long time, most likely a lifetime. I became Steven’s primary caregiver, advocate, life skills coach, chauffeur, secretary, bookkeeper, teacher, drill instructor, medical assistant, physical-occupational-speech therapist and his mom. That blast changed the fabric of our family.”
While many caregivers, military or civilian, are frequently responsible for the oversight and administration of all medical, mental and daily living functions for service members, a 2010 survey by the National Alliance for Caregiving found that veterans have different caregiving needs when compared with their civilian peers: They are younger (18-54), their service-related condition is a longer-term endeavor, and they have higher requirements for activities of daily living that may last well beyond their caregiver’s lifetime.
Caregivers of veterans also report a greater impact of caregiving on their lives than caregivers in general, and those caregivers whose veterans have traumatic brain injury, post-traumatic stress disorder or depression or anxiety are more likely to have their health impacted by emotional stress and feelings of isolation. Some have even been recognized as suffering from secondary post-traumatic stress disorder by the Department of Veterans Affairs owing to their exposure to the trauma the veteran endured.
During one 10-month period of her husband’s hospitalization at Walter Reed Army Medical Center, Elizabeth Dole spent time talking to, comforting and learning from these wounded warriors, their parents and spouses as they began their life-changing journey. Mrs. Dole, having had the “privilege,” as she so aptly says, of serving from time to time as a caregiver to her husband, Robert, was struck by the immense obstacles these family members faced, and she saw an urgent need for better support. As she heard from the young wife of an Army soldier who now suffers from traumatic brain injury, post-traumatic stress disorder and degenerative issues, “My days, hours and minutes are seldom mine and in the decades to come as I care for my hero, a man that I am honored and privileged to stand beside, my responsibilities will only increase.”
To help ensure this young wife and thousands of other military and veteran caregivers receive the honor, respect and support they have nobly earned, Mrs. Dole created Caring for Military Families, a program of the Elizabeth Dole Foundation. Its emphasis on innovation, evidence-based research and collaboration will help raise awareness and educate Americans while empowering and directly supporting caregivers.
During Military and Veteran Caregiver Week, March 4-8, the foundation is awarding its first Innovation Grants to the National Military Family Association, the Military Child Education Coalition and the Military Officers Association of America. It will also release Phase 1 of its commissioned RAND study of the enormous responsibilities facing as many as 1 million caregivers and the impact these challenges have on caregivers’ own health and well-being. Phase 2 of the RAND study will undertake critically important research on military caregivers that will include needs assessments, gap analysis and actionable recommendations.
While the federal government has increased support for some caregivers post-Sept. 11 through new laws such as the Caregivers and Veterans Omnibus Health Services Act of 2010, which created a comprehensive assistance program at the Department of Veterans Affairs, much of the day-to-day assistance for caregivers continues to come from nonprofit organizations such as Paralyzed Veterans of American, Veteran Caregiver or the Quality of Life Foundation. No national strategy currently guides the policies and programs that support the caregivers of tens of thousands of military members and veterans. By calling attention to their needs and the challenges they face, Mrs. Dole is helping us meet our collective responsibility of honoring those who care for those whose service we all honor. The years I cared for my husband before his death from cancer were too few. Yet, thanks to the example of steadfast love and determination I had witnessed from military and veteran caregivers, they were at times the most tender, trusting, thoroughly honest and emotionally intimate of our marriage. They were also frustrating, frightening, confusing and often overwhelming. The illness wore us down, but it did not tear us apart. With the leadership of Mrs. Dole and her foundation, many military caregiving families will, hopefully, be able to say the same.
Lynda C. Davis is the former deputy undersecretary of defense for military community and family policy.