Young Military Spouses Face Unexpected New Role: Caregivers For Life
When service members return from the battlefield with lifetime disabilities, their spouses often become full-time caregivers.
The wars in Iraq and Afghanistan have drafted more than a million family members into caring for returning wounded and injured troops. They've been called "Hidden Heroes" - the military caregivers of Post-9/11 veterans.
They are mostly young spouses with families who never expected to take on the role. If the wounded veteran is unmarried, his or her aging parents may take on the role.
For Patti Katter, who lives near Sarasota, Fla., life as a fulltime caregiver began the night her husband returned from Iraq in 2007. Army Sergeant Ken Katter survived two roadside bombs with what were then thought to be minor injuries - a concussion and ruptured eardrums. So, he remained in combat for his full 15-month deployment and didn't come home until several months later.
"We had dinner together and probably within an hour, he didn't remember eating," Patti Katter said about Ken's first night home from Iraq. "I thought he was just very sleep deprived because he'd just gotten home. So I just kind of blew it off a bit."
But that same night, he had a seizure while sleeping.
"I really put my foot down, and I said you need to go to the doctor," she recalled. "He was having not only memory issues, but he was in a lot of pain. He was frustrated very easily."
Over a series of months and medical appointments, Ken Katter was diagnosed with a traumatic brain injury, a blown disc in his neck, a back injury, hearing loss, and other injuries. He suffers seizures and can no longer remember how to write his name in cursive.
Ken Katter's "invisible" injuries also left him with balance problems and other medical issues that prevent him from holding a job or doing even small household tasks.
But Katter counts himself lucky. He has all his limbs and can walk. His seizures are under control so he can drive again - even though he has a tendency to get lost.
He was medically retired from the Army in 2010. He had previously served in the Marines from 1990-1994.
Caregivers often alone, depressed
For the last decade, Patti Katter has managed her husband's medical appointments, medications, and rehabilitation. She initially homeschooled their three children to make it easier fit a myriad of doctors appointments into her schedule. And she took care of the household too.
Then three years ago, the stress overwhelmed her.
"I wasn't suicidal, but I was in a dark place. Not only was I dealing with being a caregiver, I had a mom who had cancer and my dad was unhealthy," she said.
She learned to care for herself and found a job with a non-profit, Hope for the Warriors. She now works from home helping other military caregivers navigate the system. And she is a fellow with the Elizabeth Dole Foundation that advocates for military and veteran caregivers.
"So many of these young spouses in their twenties and thirties (are) suddenly realizing that they're going to be caregivers probably for the next 50 years, if not their entire life, and no one was handing them a manual," said Steven Schwab, executive director of the Dole Foundation.
The Dole Foundation surveyed of military and veteran caregivers to find out what they needed. The Hidden Heroes Report found respite care topped the list, followed by mental health support and training.
"These caregivers - especially the Post-9/11 caregivers - are struggling from high rates of depression and anxiety," Schwab said. "They're incredibly isolated. They feel alone and in most cases are alone without a support system."
The foundation was started by Elizabeth Dole, a former U.S. Senator from North Carolina. It conducts research and offers innovation grants to organizations, caregiver fellowships, and maintains a national registry of more than 200 vetted caregiver resources.
Demand for caregiver aid overwhelms VA
The Department of Veterans Affairs also has a special program for caregivers of Post-9/11 veterans severely injured in the Iraq and Afghanistan wars. It provides financial help and other services.
"The majority of our veterans in this program do have post traumatic stress, mood disorders and TBI," said Cynthia Fletcher, a caregiver support coordinator at Tampa's James A. Haley VA. "So, the caregivers are struggling with those mood disturbances which can be very challenging."
Fletcher said the VA also operates a caregiver support line, 1-855-260-3274, for military caregivers of veterans from all eras. She said it received more than 57,000 calls last year.
When the VA began the Post-9/11 program in 2011, it estimated about 4,000 caregivers would qualify. But almost 25,000 enrolled within four years. Some VA offices have been dropping caregivers from the program, but the agency says it will continue to provide resources to "enhance the caregiver role."
In March, Secretary of Veterans Affairs David Shulkin asked Congress to expand the Post-9/11 caregivers program.
For caregivers like Patti Katter, the biggest concern is what will happen 20 or 30 years from now if her husband's memory problems worsen and she is unable to keep up with his growing needs.
"Or what if something happens to me, who is going to take care of him?" Patti Katter asked. "Our kids have been very resilient. They love their father, but I don't want that to fall on their plate."
For now, Kattner is collecting the VA benefit, and she's learned that even as she cares for her husband and family, she also has to care for her own needs.
Inside their home, a bouquet of bright red roses sits prominently in the kitchen pass-through. Patti bought them for herself.
"It's important to love yourself," she said. "Ken doesn't emotionally attach anymore, so I've learned. I know he loves me. I have no doubt about that, but I've also learned to love myself better."