Military caregivers joined former Senator Elizabeth Dole and actor Ryan Phillippe in calling for more support for those who care for veterans — including caregivers for pre-9/11 vets.
"As a pre-9/11 caregiver, the VA offers me almost nothing," said Mary Ward, who has been a caregiver for her husband, Tom, since 1993. "I receive no caregiver training from the VA, no stipend, no support other than a monthly national call with focused topics, and a few months ago was denied respite hours."
Ward and two other caregivers — joined by their veteran husbands — testified Wednesday before the Senate Special Committee on Aging.
"When a person joins the military, the whole family serves. That service can last a lifetime," said Sen. Susan Collins, R-Maine, who heads the committee. "It's clear to me that nation's 5.5 million caregivers who face such financial and emotional issues each and every day need far more support than we have been giving."
Dole said the disparity is unfair.
"It’s so frustrating to me, because these [pre-9/11 caregivers] have been providing services for years with no acknowledgement, without anyone acknowledging the great work and services that they’re providing … without the resources to be to provide some respite care, an opportunity to have a stipend, which can be very helpful," she said. "They deserve to have the same benefits as [post-9/11 caregivers]."
Not only do these older veterans have war wounds, but their injuries are compounded by the aging process, Dole said. Some are developing Parkinson's disease, cancers and other health issues, are less mobile and have more pain.
"They're dealing with all of this without the support they absolutely deserve," she said.
Actor Ryan Phillippe, who is an ambassador for the Elizabeth Dole Foundation's Hidden Heroes program, has visited with a number of wounded warriors and their caregivers.
"Something that really stands out to me in the conversations I've had is the strain on the family unit itself. The fact that a lot of caregivers have to put their lives on hold, their financial dreams, occupations they might want to pursue, to take care of the veteran," he said.
The requirements and stresses of the full-time caregiving often affect important things such as parenting, he said. "That's why the respite care is so important. Getting some relief, some time off to be your own person, and then to return to your work as a caregiver with the required energy."
Hidden Heroes is a national campaign to raise national awareness of the challenges and long-term needs of military caregivers. That includes reaching out to caregivers of all generations to let them know of some support available to them through the foundation and in some communities.
Mary Ward said she didn't realize she was a "caregiver" until she saw an interview with Elizabeth Dole in 2013, calling the experience an "epiphany."
She has been her husband's caregiver since 1993, when Tom Ward was disabled from encephalitis. But in June 2010, Tom Ward was diagnosed with ALS.
"The all-encompassing care of ALS is intense," Mary Ward said.
Her husband served in the Marine Corps from 1972 to 1975, so he qualifies for VA benefits based on the ALS diagnosis.
"My grief has known no bounds," Mary Ward said. "I know how this disease works. It will steal his life, and if I am not careful it will take mine as well.
"The work ahead as his caregiver is daunting at best. I am certain that I am not up to the task alone, yet for the most part I know I will have to be."
Because Tom Ward is a pre-9/11 veteran, the Wards don't qualify for certain benefits that have been provided to post-9/11 veterans' caregivers, such as a monthly stipend and respite care.
Dole and Phillippe noted that many of the post-9/11 veteran caregivers may be facing over the next 50 years or so what the pre-9/11 veteran caregivers have been dealing with, and more research needs to be conducted on various aspects of these veterans and families to help support them.
The Dole Foundation commissioned the Rand Corporation to develop a research blueprint to guide future efforts in building support for military caregivers. According to Terri Tanelian, a senior behavioral scientist at Rand, the high priority research objectives should answer these questions:
- Who are the country’s military and veteran caregivers?
- How much are caregivers saving taxpayers by performing this service, keeping the veteran in his or her own home and providing the care?
- How does caregiving affect the caregiver?
- How does caregiving affect the children of caregivers?
- How does caregiving affect the veteran?
- How do the veterans’ needs for care change over time?
- What factors are associated with harm to the caregiver and/or the veteran?
- What strategies can make effective programs more accessible to more caregivers?
- How effective are programs and policies in ensuring the well-being of caregivers?
- How effective are programs and policies for supporting caregivers’ ability to provide care?
Joe Swoboda, a retired Army sergeant first class, served 18 years, including three tours in Iraq. He suffers from traumatic brain injury and post-traumatic stress. His wife, Melanie, testified about how important the VA caregiver program is to her.
"There are days when I think I can't go on like this, I can't have this much stress and pressure on me," she said. "And it's not just the stress on me. I also see how the stress of caregiving affects our children. Respite services, though, give all of us an opportunity to recharge."
Joe Swoboda said he has seen how the stress of war wounds affects others, including those from previous wars, and emphasized the crucial contributions of caregivers.
"My wife grounds me," Swoboda said. "That's why caregivers are so important. We know there are no IEDs on I-95, but we know we have to look. ... We can't stop that, so we need somebody there to ground us."
After being in the combat environment, where soldiers are so used to being on edge and going "1,000 miles an hour," he said, it's difficult to adjust when they come home.
His wife is a teacher, with a master's degree, who has "had to step way down" in her career path "just to be there for me," he said. "She's happy to do it, and I would much rather have her than anybody else.
"But there's a sacrifice."
Senior reporter Karen Jowers covers military families, quality of life and consumer issues for Military Times. Email her at firstname.lastname@example.org.