"I thought I was going to spend the next few years dreaming about retirement, not taking care of my injured son."
So said a woman in her early fifties to me at a party several years ago, as she described her life as a new, full-time caregiver. Returning from a tour of duty in Afghanistan after two years, her twenty-something son faced an uphill battle recovering from a traumatic brain injury and partial leg amputation.
Since the September 11 attacks and the U.S. military's recent involvement in Iraq and Afghanistan, an unprecedented number of American veterans have returned to our shores with life-altering wounds - both mental and physical - that previous generations would likely not have survived. I don't think our government - and certainly not the parents and caregivers left to manage the wounded aftermath - were initially prepared for what long-term caregiving would mean.
Are We Prepared Now?
Consider these statistics from the Wounded Warrior Project, one of several organizations developed to help veterans and their families with lifetime care needs.
- For every US soldier killed in World Wars I and II, there were 1.7 soldiers wounded.
- In Operation Iraqi Freedom and Operation Enduring Freedom, for every US soldier killed, 7 are wounded.
- Combined, over 48,000 servicemen and women have been physically injured in the recent military conflicts.
- In addition to the physical wounds, it's estimated that up to 400,000 service members live with combat-related stress, major depression, and post-traumatic stress disorder, among other mental issues.
- Another 320,000 are believed to have experienced a traumatic brain injury while deployed.
What have we learned from the onslaught of injured military veterans now requiring care from family and institutions like Walter Reed Hospital in Washington, D.C.?
"We're realizing it's a long game," says D.C.-based psychiatrist Dr. John Cosgrove, who's worked for years with veterans and military families. "It's not a one-time investment. It's not like you repaired the chest wound and the patient is fully functional. Because of advances in medicine and new techniques, such as getting them into trauma units quicker and flying them out faster, we're seeing more survivors. That means more needing care. And the cost in money and time is more than any expected."
How Caregiving for Veterans is Different
When we think of caregiving in this country, we think of Alzheimer's and dementia-related support. We think of providing support for cancer patients who might need to go through several rounds of chemotherapy to manage their disease. We think of older people perhaps nearing the end of their lives.
Do we think as much of younger veterans and their caregivers who face decades of need? How is caregiving for this group, who suffer chronic pain and illness, different than caring for an older person or someone with a terminal prognosis?
"Caring for a loved one is a humbling responsibility and very complex, regardless of diagnosis or longevity of care," says Anna Frese, caregiver and Senior Independence Program Specialist for the Wounded Warrior Project. "The one big difference is length of time the caregiver potentially is supporting and sustaining the care and quality of life for their loved one."
"It's not for a few years; it could be 50 years" Cosgrove notes. "In addition, when you're dealing with a 29-year-old guy, part of his identity is his physicality, thinking he's strong. If that's been taken away because he's lost a limb or is paraplegic, his caregivers don't want to pity him; you want to empathize and empower him. It takes a lot of mental encouragement. You have to be supportive as the veteran mourns the loss of his physicality or whatever deficit he now has."
What Can We Do As a Nation?
Military veterans who've suffered an injury have more than done their part. They've made enormous sacrifices. What can we do to make sure we honor the struggles they -- and their families -- face?
1. Understand the Size and Scope of Military Caregiving
"As a nation, we can remember that many veterans are living with wounds, illnesses, and injuries that will require lifelong care and support," says Frese.
How many? According to the Family Caregiver Alliance:
- There are about 5.5 million caregivers caring for former or current military personnel in the U.S. (1.1 million post-9/11).
- 30% of veterans' caregivers provide care for 10 years or more, compared to 15% of caregivers nationally.
- Military caregivers after 9/11 are more likely to be employed (63% vs. 47%) and less likely to have a support network (47% vs. 71%).
2. Consider the True Costs of War
War isn't just expensive when we're fighting. All of us - our legislators and those of us who hold them accountable for their actions - need to factor in other costs when injured troops come home: medical and mental health care; caregiving, which often robs caregivers of time they could spend earning a living; and the need for financial support from the U.S. Department of Veterans Affairs (VA) and other organizations.
3. Adjust Expectations
"Each veteran's situation and needs are different and we have to be flexible to meet the warrior where they are in their recovery," says Frese. This means adjusting our expectations for how long caregiving may be required. It also means helping families accept that returning vets may be different. "The families don't always understand the place the veteran is in and the veteran may be able to communicate his needs," says Cosgrove.
4. Support Caregivers
Unsurprisingly, a recent study from The Rand Corporation on military caregivers shows greater family strains and workplace problems for caregivers. So how can we help offset those strains? Some ways are personal - support military caregivers you know (e.g. bring meals, take over their duties for two hours so they can go to the gym) or volunteer for an organization that reaches out to them. On a national level, help raise awareness and support for caregivers' rights in the workplace under the Family and Medical Leave Act (FMLA). Contact your legislators to encourage support for programs aimed at giving military caregivers flexibility and job protection.
Tips for Caregivers
- Check out Resources at the VA, including their online Caregiver Toolbox and Building Better Caregivers programs. Call their toll-free support hotline 1-855-260-3274, or visit one of their local offices.
- Learn About Your Loved One's Illness, Wound or Injury. "We hear from family members/caregivers that education is key," says Frese. There is great fear in the unknown, so education has helped many gain a sense of control in understanding of the diagnosis and managing their loved one's needs."
- Start Planning. Once the initial shock of being drafted into caregiving wears off, go into long-term planning mode. Work with military support organizations that specialize in legal and financial plans for wounded veterans. This is even more important given how long the caregiving needs may last.
- Find Support to Navigate Systems. Reach out to red tape-defying groups like the Yellow Ribbon Fund, which helps wounded warrior caregivers navigate bureaucratic structures of large organizations like the VA. If you need one-on-one advocacy, find a case manager who may need to delve deeper.
- Take Care of Yourself. "Try not to feel isolated because you'll feel overwhelmed," says Cosgrove. "Reach out to friends and family, a counselor, or community support group." Caregiving for a wounded veteran is a marathon, not a sprint. If you don't take care of yourself, you won't be able to take care of your veteran "caree."