WASHINGTON–Advocates for military caregivers are working together to discuss and define the unique challenges of caring for a loved one who was injured in combat.
The Elizabeth Dole Foundation, in partnership with the Department of Veterans Affairs, held the 2nd Annual National Convening: The Military Caregiver Journey event Monday to bring together hundreds of caregivers, healthcare professionals, and community advocates to discuss how to get necessary support and resources to caregivers and their families.
Former Senator Elizabeth Dole announced that her foundation will lead a program called “The Campaign for Inclusive Care,” collaborating with the VA to integrate caregivers into the care plan of their veteran loved one. The program is funded through a philanthropic investment from USAA for $1 million.
“It will bridge the divide that exists between caregivers and doctors, nurses, and social workers within the VA,” Dole said. “Healthcare providers will be trained to embrace caregivers and to integrate them into the medical team.”
“We’re talking about a major, major cultural change within the largest integrated healthcare system in America,” she added.
During the day, attendees collaborated in several breakout sessions to create a draft of a “caregiver journey map” that will help pinpoint what resources these families need, and when in their lives they need them the most. The information gathered will refine current versions of the maps that the Philips company has been developing in partnership with the Dole Foundation.
“Sec. (David) Shulkin and I have invited each of you, our most valuable team members, to help us make the critical determinations of where, when, and what kind of help must get to our military caregivers and their families,” Dole said to the audience.
The map is expected to be completed in 2018.
After attending some of the breakout sessions for the journey map, Jason Courneen, a caregiver to his wife Alexis who served in the Coast Guard, said he was surprised by how common some of the needs were among the group, regardless of their backgrounds.
“I was surprised how easy it was to all agree on what’s missing and where we can help,” he said.
One of the biggest issues he believes is missing in helping caregivers is “effective case management” at the VA to help with administrative work.
“To have someone in the building that can be your eyes and ears and behind-the-curtain type of person is huge,” Courneen said. “Takes that responsibility and that time load off of me so I can concentrate on what matters, spending time with my wife and kids.”
Working with other caregivers in the breakout sessions has been great, said Annie Remsburg. She is the caregiver for her son, Cory Remsburg, a retired Army Ranger who was wounded in Afghanistan.
“I think that all of us can learn from one another. No one of us knows anything more than another and just being able to meet other people, hear about their experience,” she said.
Remsburg said she is concerned about the recognition for invisible wounds and also the psychological impact on children, something other caregivers brought up. She would like more done, including having studies conducted on those issues.
Jacqueline Goodrich was initially told by the Army when her husband was seriously wounded that she was not needed as a caregiver because he could, as she said, “put his pants on. He could not do much else but he could put his pants on, so he did not need a caregiver and I was to go home.” However, she eventually realized that all the work she was doing for him really did in fact make her his caregiver.
Using her experiences to help draft the caregiver journey map, she says it’s critical now for caregivers to not only self-identify, but for the Department of Defense and the VA to identify them as well.
“And then they’ll know what resources they’re eligible for, because if you don’t think that you fit into that category, you’re not going to seek anything out,” she said.
Goodrich also says having these departments recognize that there is a broader range of what a caregiver is to a veteran, could help identify them and get these families “support sooner before they end up in crisis.”
For the impact the map will have once it’s complete, Goodrich says she hopes it will help those who know caregivers.
“To better understand why they act the way they do, why they can’t go out and be social or why they turn down invitations…and you know, maybe they won’t be able to fully understand it, but maybe they’ll just be a little bit more compassionate about it.”