When Jenna Malone’s husband, Isaac, returned home from his deployment with PTSD and a TBI, she stepped in as his full-time caretaker, but their marriage began to unravel. To make matters even worse, Jenna developed secondary PTSD. She was juggling work, three kids under the age of 5, and caring for her husband amid his suicide attempts and his refusal to get help.
“It took me a long time to realize what secondary PTSD was and how it was impacting me,” Malone told We Are The Mighty. “One of the most helpful things on our journey was a program called Warrior Care Network. They had an option for me to get trauma treatment at the same time my husband was in treatment.”
For Cindy Parsons, a single mother and nurse in Ohio, life looks significantly different than it did before her son, Shane, deployed to Iraq. During his deployment, Shane was injured by anti-coalition forces and suffered a severe brain injury and two cardiac arrests. In addition, he sustained substantial injuries to his legs and ultimately underwent surgery for bilateral above-the-knee amputations. In an instant, Parsons became his full-time caretaker.
“I had to give up my job as a nurse, so I lost my income and insurance,” Parsons said. “My son required 24-7 safety care, because of his severe brain injury and the loss of both legs above the knee. Caring for him led me to lose resources and time for my own health.”
The experiences of Malone and Parsons aren’t outliers. They are two of more than 14.3 million military and veteran caregivers in the United States – a population at the forefront of a new study commissioned by the Elizabeth Dole Foundation, America’s Military & Veteran Caregivers: Hidden Heroes Emerging from the Shadows, that paints an eye-opening portrait of reality of a caregivers’ essential role in caring for injured or wounded service members and veterans.
The study – which was made possible with the support of Wounded Warrior Project, the Lilly Endowment, AARP, and Lockheed Martin, serves as a 10-year follow-up to the Elizabeth Dole Foundation’s first landmark report in 2014 – highlights the overlooked and underreported issues the military caregiver population experiences and how they’ve reached concerning levels.
“Most people don’t realize the toll it takes to be constantly on guard and responsible for an adult who’s fully dependent on you,” Parsons told We Are The Mighty. “Sometimes, I get asked what I do all day. It’s hard to explain. You lose sleep from the constant planning and anticipation.”
The report found that of military/veteran caregivers to those 60 and under, a staggering 42% met criteria for depression –a statistic almost four times the rate of non-caregivers – and 20% of military/veteran caregivers to those 60 or under had thought about taking their own lives, which is also four times the rate of non-caregivers.
Malone added that more than half of caregivers in the post-9/11 military population are 35 or younger.
“A lot of us take care of someone while working full-time and caring for little children. We need support to not burn out and get overwhelmed,” she said.
The report also states that military and/or veteran caregivers incur an estimated $8,583 in annual out-of-pocket costs associated with their caregiving responsibilities and caregivers forgo an estimated $4,522 in annual household income.
“So much caregiving takes place in private, so people don’t understand the deep sacrifice caregivers are making every day for the person they love,” Parsons said.
The 278-page report also shared recommendations, which include:
- Increase access to mental health and substance use treatment for caregivers and their children.
- Increase opportunities for caregivers to access available financial support, and offer additional financial compensation to caregivers for the work they perform.
- Tailor caregiver support programs to reflect caregivers’ diverse preferences and needs.
- Expand and promote home health care considering how caregivers will be affected.
- Focus programmatic and social support within the context of local conditions in which military/veteran caregivers live.
- Encourage health care systems to better integrate caregivers into health care teams.
- Promote work environments that are supportive of caregivers.
- Continue to conduct rigorous evaluations of those initiatives designed to support military and veteran caregivers.
- Continue to conduct research that fully captures the breadth of caregiving and those who serve as caregivers.
Both Malone and Parsons agreed that receiving more support was a “game changer” in their roles as caregivers – and are hopeful it becomes a reality for others.
“Knowing a qualified person was caring for my son allowed me to finally rest,” Parsons said. “We connected with a support worker through the Wounded Warrior Project. They even took him out to volunteer and socialize. Suddenly, I had space to start taking care of myself. I even started working again part-time.”
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