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Aging military caregivers fear for the future

Army Sgt. First class Cory Remsburg, left, along with his parents Annie and Craig, receive a standing ovation during a VA Brain Trust summit in Washington DC. Remsburg was an Army Ranger when he suffered severe injuries, including traumatic brain injury from a bomb in Afghanistan in 2009.

DIANNA CAHN/STARS AND STRIPES

By DIANNA CAHN | STARS AND STRIPES Published: October 3, 2016

WASHINGTON — Annie Remsburg quit her job when her son Cory, a 26-year-old sergeant first class, sustained a severe, penetrating traumatic brain injury in 2009 on his 10th deployment to Afghanistan.

For years, she and Cory’s father, Craig, worried as he struggled from almost functionless to learning how to walk and talk again. The Army Ranger made such progress that President Barack Obama said no one he has met has inspired him more. Still, she knows her son will never be fully independent.

In recent years, Annie Remsburg developed tremors that will worsen with age, and two years ago, at 63, she had a heart attack and had two stents inserted.

Now she has something else that keeps her awake at night: What happens when she is too old or too sick to care for Cory?

“There are a lot of hardships I bear as a family caregiver and as a parent because I have an age factor,” Remsburg said during a Washington summit on military caregivers on Wednesday. “Some of the concerns I have are relative to things like Social Security on my part, loss of income, aging – I have to have contingency plans in place. My son was never married. He was injured at 26, he’s only 33. He’s had some severe impact from the brain injury, which means he needs assistance.”

Even young spouses caring for wounded veterans wonder what will happen as they age. Tending to a severely wounded loved one takes a toll. Caregivers suffer from sleepless nights, fatigue and often depression and anxiety. Studies show their own health can deteriorate.

Will it fall to their children to care for their wounded parent? Will there be any money left to cover their needs?

As the country passes 15 years since the Sept. 11 attacks that sent a new generation off to two wars, experts involved in caring for the long-term wounded veterans are beginning to ask what will happen when these families get older and their care becomes even more difficult.

There are 5.5 million military caregivers in the United States today – a fifth of them as a result of recent wars. As American veterans age – from 2.2 million over 65 in 1960 to more than 10 million by 2020 – so do the wounded and those who care for them, Department of Veterans Affairs Secretary Bob McDonald told those gathered at the summit.

“They are battling injuries we’ve never seen before,” McDonald said. “We don’t know how those wounds will affect them as they age, which means we don’t have a good enough idea what that will mean to their caregivers. So the challenges those 1.1 million post-9/11 caregivers are seeing today are just a glimpse of the demands they may see by 2020, 2030 and 2040.”

The summit, organized by the Elizabeth Dole Foundation, the VA and Mayo Clinic, brought together caregivers and the government and private organizations that serve them to look at services that have been put in place for them and to brainstorm about the gaps and how to fill them. A big one, they agreed, is ensuring a contingency plan for an aging generation of veterans and those who care for them.

Roxana Delgado said she’s watched fellow caregivers in their late 20s and 30s fall ill with ailments that usually affect older people like heart attacks, arthritis and celiac disease. One day it hit her: She could be next.

“By the time I am Annie’s age, I will be caregiving for 32 years,” said Delgado, whose husband was wounded by an improvised explosive device in Iraq in 2009, the same year Cory Remsburg almost died. “The toll of the [caregiver] role and responsibilities for 32 years – what am I going to look like healthwise when I am 65?”

Delgado, who completed her doctorate in health sciences after her husband was wounded, said he has achieved a remarkable level of independence. But she knows he will get worse at some point. Will she be able to care for him as she ages?

“I think about those caregivers with children,” she said. “Are those children the caregivers we are seeing now? Are those children 20 years later caring for both parents? And how is that going to affect their finances, their careers, their work and their schooling?”

Their generation, she said, is like a new social epidemiology problem that for the first time is facing “a cluster of diseases: TBI, PTSD, seizures, epilepsy, chronic pain, opioid use. You have this cluster of conditions that has never been seen before or studied before. We don’t know what is ahead.”

Courtney Van Houtven, a health economist at the Durham (N.C.) VA Center for Health Services Research and Development and Duke University, cited data from a Mayo Clinic study showing that in the immediate aftermath of a servicemember’s injury, 40 percent of caregivers quit their jobs and more than 70 percent depleted their assets significantly or went into debt.

They’ve lost one income with the injured veteran, and then the caregiver loses his or her income, savings, retirement and Social Security.

“So we really need to understand better over the long term what the impact is on caregivers and try to figure out ways to ameliorate it,” she said.

To do that, the RAND Corp. distributed a survey and called on those attending to participate in an online panel to help identify priorities in a new research blueprint for the future of military caregiving.

The study follows an initial RAND study released 2014 that, with a grant from the Dole foundation, reached 40,000 households and recognized the scope of military caregiving in the United States, said lead researcher Terri Tanielian, a senior behavioral scientist at RAND.

That study revealed concern that philanthropic support for veterans and caregivers could wane in coming years. And it identified two specific threats to caregiving, Tanielian said – aging parents and young, fragile marriages that don’t survive. “Twenty-five percent of the caregivers for the post-9/11 veterans were parents and we know that in just 15 years, they are going to reach an age when they are no longer able to perform those caregiving responsibilities,” she said.

“With just those two threats we know that in 15 years, we are going to face a crisis in military and veteran caregiving,” she said.

Cahn.dianna@stripes.com
Twitter: @DiannaCahn

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