Future Unknown For Caregivers Of Post-9/11 Veterans

Ken and Patti Katter have learned to make adjustments to live with his memory loss due to traumatic brain injury.

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 young families or aging parents who never expected to take on the role.

Patti Katter’s world changed the night her husband returned from Iraq. Army Sergeant Ken Katter survived two roadside bombs that hit his truck in May 2007 with what were 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 October 2007.

“We had dinner together and probably within an hour, he didn’t remember eating. I thought he was just very sleep deprived because he’d just gotten home. So I just kind of blew it off a bit,” Patti Katter recalled about his first night home from Iraq.

Patti Katter has ordered and managed her husband’s medications for almost 10 years and going.

But that same night, Ken Katter had a seizure while sleeping and without any time to prepare Patti Katter was thrust into the role of military caregiver.

“I really put my foot down and I said you need to go to the doctor,” she said. “He was having not only memory issues but he was in a lot of pain. He was frustrated very easily.”

Her husband saw a doctor about a week later. 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, the list goes on from complex symptoms such as seizures to simple things like he can no longer remember how to write his name in cursive.

He was medically retired from the military in 2010 after serving in the U.S. Army since 2005 and the Marines from 1990-1994.

Inside the Katter home just northeast of Sarasota, a bouquet of bright red roses sat prominently in the kitchen pass through. Patti bought them for herself.

“It’s important to love yourself,” she said. “Ken’s not, he 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.”

Ken Katter took up wood carving as part of his rehabilitation. His wife says his brain injury has made it more artistic.

Ken Katter’s “self portrait” carved into a walking stick.

Ken Katter’s “invisible” injuries also left him with balance problems and other medical issues that prevent him from holding down a job or doing even small household tasks like hanging ceiling fans.

But he 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 now uses GPS to guide his travel.

For the last decade, Patti Katter has managed her husband’s medical appointments, medications and rehabilitation. She initially homeschooled their three children so it was easier to see the myriad of doctors. 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 20s and 30s (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 did a scientific survey of military and veteran caregivers to find out what they needed. The Hidden Heroes Report found that respite care topped the list, followed by the need for mental health support and training.

The Katter family: Hunter, Savanna, Patti, Ken, and Ashlay.

“These caregivers – especially the Post-9/11 caregivers – are struggling from high rates of depression and anxiety. They’re incredibly isolated,” Schwab said. “They feel alone and in most cases are alone without a support system.”

That’s why former U.S. Sen. Elizabeth Dole started the foundation. It does research and offers innovation grants to organizations, caregiver fellowships, and a national registry of more than 200 vetted caregiver resources.

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 behavioral disturbances, 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.

Ken Katter served four years in the Marines, and more than a decade as a police officer before rejoining the Army.

And the VA secretary asked Congress in March to expand the Post-9/11 caregivers program. Of particular concern to caregivers like Patti Katter is what happens 20 or 30 years from now should her husband’s memory problems worsen and she is unable to cope.

“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.”

The VA estimated about 4,000 caregivers would qualify for its Post 9-11 program. But almost 25,000 were enrolled within four years. So, the VA has been scrambling to fill the immediate demand leaving little time to consider the long-term needs of veteran caregivers.

You can listen to their story which aired on WUSF 89.7 FM as part of the American Homefront Project.

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Artist, Author, Former President Bush Visits MacDill AFB

Former President George W. Bush painting one of 66 portraits he produced for his new book. Photo courtesy of The Bush Center.

Former President George W. Bush painting one of 66 portraits he produced for his new book. Photo courtesy of The Bush Center.

The 43rd president appeared on the Today Show Monday to kick off his book tour and is following that with an appearance at Tampa’s MacDill Air Force Base in the afternoon with a book signing.

He won’t take questions from media. However, former President George W. Bush will autograph pre-purchased copies of his book at MacDill’s Surf’s Edge Club.

It’s been eight years since Bush has occupied the White House. And among his many pursuits he has picked up brush and started painting.

He has become rather prolific producing 66 portraits of military veterans for his book, Portraits of Courage: A Commander in Chief’s Tribute to America’s Warriors. Many of the men and women are wounded physically or with traumatic brain injury or post-traumatic stress. Bush paints their portraits and writes the story of their service.

The book’s title riffs off of the Pulitzer-winning book, Profiles in Courage, written in 1956 by former President John F. Kennedy while he was a U.S. Senator and after his distinguished career as a U.S. Naval officer during World War II. Kennedy’s book features eight profiles of men he felt showed extraordinary political courage.

Proceeds from Bush’s book will be given to his foundation, the George W. Bush Institute’s Military Service Initiative, which supports transitioning military members offering help with employment and resources.

Judge Asks University To Readmit Expelled Veteran

Hillsborough Circuit Judge Greg Holder with a graduate from Veterans Treatment Court in August.

Hillsborough Circuit Judge Greg Holder with a graduate from Veterans Treatment Court in August.

A Hillsborough Circuit judge is calling on the University of South Florida to live up to its recent ranking as a top “veteran friendly” university.

Judge Greg Holder has asked USF President Judy Genshaft to readmit a student veteran who was expelled after an off-campus incident in August 2014.

Holder said the charges against former Army Staff Sergeant Clay Allred were serious – threatening a store clerk with a firearm and later discharging the firearm into the air – but Allred’s actions were directly related to his combat service in Iraq and Afghanistan.

When Allred was accepted in the Veterans Treatment Court, he admitted his guilt, accepted responsibility and was sentence to two years on house arrest followed by three years of probation.

Now after a year of court supervision and treatment for traumatic brain injury (TBI) and post-traumatic stress disorder (PTSD) that had gone undiagnosed, Holder said the former Green Beret deserves a second chance to complete his degree.

In his letter dated Nov. 13, 2015, the judge requested that USF re-admit Allred as an online student so he can finish his senior year. Holder even offered to amend Allred’s house arrest to prohibit him from going onto USF property.

“I’m providing whatever protections Dr. Genshaft or her personnel might deem appropriate,” Holder said. “So, that hopefully consistent with USF status as the number two veteran friendly school in this nation, we can get this man back as a member of the ‘Bull Nation.’”

A USF spokeswoman said the university has received Holder’s letter, but could not say if Genshaft has read it. The university declined comment on Allred’s status citing federal privacy laws and added that “USF does not offer online exclusive undergraduate programs.”

Along with his letter, Holder included 40 pages of supporting documentation including Allred’s citation for the Army Bronze Star Medal awarded for his service in Afghanistan training members of the Afghan National Police.

Tampa VA Gives TBI Veterans the STAR Room Treatment

VA speech and language pathologist Kathryn Kieffer

Haley VA speech and language pathologist Kathryn Kieffer explains how the sensory therapies are used in the STAR room.

The Veterans Affairs scandal over delayed medical appointments and secret wait lists is still unfolding. And there’s been plenty of evidence that there are systemic problems at VA medical facilities throughout the U.S.

Yet, even the VA’s toughest critics note that most of the VA medical staff are hardworking, dedicated professionals.

“I believe that the majority of VA’s workforce, in particular, the doctors and nurses who provide our veterans with the care they need, endeavor to provide high-quality health care,” said Florida Congressman Jeff Miller, chairman of the House Committee on Veterans Affairs, Thursday at a hearing on VA bureaucratic barriers.

The medical staff at Tampa’s James A. Haley VA Polytrauma Center was acknowledged in April for their “cutting edge” care that helped revive Army Ranger Sergeant First Class Cory Remsburg from a severe brain injury.

A device to stimulate auditory and visual responses from TBI veterans.

All sorts of devices are used to stimulate brain-injured veterans like this flag-shaped button that when pressed makes the toy monkey clang its cymbals.

“He (Remsburg) arrived comatose with a severe, traumatic brain injury and long odds for recovery. But VA’s remarkable medical staff never gave up on the effort to jump start his brain,” said  Sloan Gibson in April as then deputy VA secretary at the opening of the new Haley Polytrauma Center.

Gibson is now acting VA secretary having taken the reigns after the resignation of Secretary Eric Shinseki.

“They tried a countless variety of sensory approaches to bring him to consciousness everything from aroma therapy to sitcoms on TV,” Gibson said. “Three months later, Cory became one of seven out of 10 patients with severe traumatic brain injury who’d come back to life through VA’s ground breaking emerging consciousness program.”

Those sensory therapies, used by the medical staff, have been brought together in the new, Haley Polytrauma Center. The STAR Room,  an acronym that for the Sensory Technology Awareness Room, is designed specifically for patients who are minimally conscious or emerging from severe brain injuries.

A wall projection of colors acts as a visual stimulant for veterans with TBI.

A kaleidoscope of colors is projected on the wall of the STAR room as visual stimulation for brain-injured veterans.

Speech language pathologist Kathryn Kieffer welcomed visitors into the STAR Room during the open house in April. It was dimly lit in hues of purple and pink.

Kieffer pushed a large, flag-shaped button that activated a toy monkey which clanged its cymbals and squeaked.

“We have over here an eye gaze device,” Kieffer then demonstrated how by just looking at a button written with the word “yes” – it generated the computer to say “yes.”

The STAR room has a multi-sensory environment with a myriad of technologies to stimulate all the patient’s senses from auditory to tactile. Kieffer pointed to one of the bubble tubes. They are clear cylinders filled with liquid. A light underneath changes colors as small bubbles percolate upward.

Deputy VA Secretary Sloan Gibson at the April opening of the new James A. Haley VA Polytrauma Center.

Deputy VA Secretary Sloan Gibson at the April opening of the new James A. Haley VA Polytrauma Center.

“The bubble tubes also have some vibratory properties to them so you can touch them and get some tactile feedback,” Kieffer said.

The STAR room was not available when Cory Remsburg was at Haley, but many of the therapies were and much of the medical staff. And those dedicated professionals now have the STAR room and the story of Cory Remsburg to motivate other severely wounded veterans to not give up.

You can hear the story on WUSF Public Radio.

New VA Polytrauma Center Holds an Open House

The main therapy pool that is heated by solar panels on the roof the the Polytrauma Center and the wall of doors open the pool to the outside courtyard.

The main therapy pool that is heated by solar panels on the roof the the Polytrauma Center and the wall of doors open the pool to the outside courtyard.

It’s not your father’s VA anymore as evidenced by just one look inside the Department of Veterans’ Affairs new Polytrauma and Rehabilitation Center at James A. Haley VA Hospital at 13000 Bruce B. Downs Blvd., Tampa.

There’s a putting green, a two-story climbing wall, and an aquatic center for recreational therapy. Each of the 56 new private rooms has large windows for natural light, lush wood paneling, wheelchair accessible bathrooms, a desk and a large-screen TV so veterans and active duty personnel have direct access to education programs and entertainment.

“It doesn’t seem so sterile. I can see green grass. I can see Busch Gardens from here,” David VanMeter, an associate director at Haley who is in charge of facilities, said as he gazed out a second-story window. “There are different things to look at instead of just four cold walls.”

A two-story, therapy climbing wall is part of the common area in the Polytrauma Center second floor area known as Main Street.

A two-story, therapy climbing wall is part of the common area in the Polytrauma Center second floor area known as Main Street.

A ribbon-cutting ceremony, which is open to the public, is scheduled Saturday, April 12, 2014, at 1 p.m. followed by an open house.

Bringing the outside indoors is the theme of the new Polytrauma Center. The home-like environment is filled with technology and conveniences to make life easier for patients like a track system in the ceiling so immobile patients can be moved easily from their bed to the bathroom.

And private rooms are carved into neighborhoods with military inspired names such as Duty, Patriot and Valor. The idea is to create a healing environment where patients and their families feel at home.

So beyond the individual rooms along an angled extra-wide corridor, there are day rooms where families can socialize.

Freeze-dried palm trees line the Main Street common area at the Haley VA Polytrauma and Rehabilitation Center where patients can relax at the internet cafe. There are cooking facilities and a children's play area as well as access to an outdoor deck.

Freeze-dried palm trees line the Main Street common area at the Haley VA Polytrauma and Rehabilitation Center where patients can relax at the internet cafe. There are cooking facilities and a children’s play area as well as access to an outdoor deck.

There’s a two-story atrium called “Main Street” that is lined with freeze-dried, 20-foot palm trees. The concept is bringing the outdoors inside.

Main Street is filled with natural light. It’s a place where veterans can relax at the internet café or take a turn at the two-story climbing wall.

“You have to think of the veterans on active duty we’re seeing. One day they are in the field. They are serving in combat. They are active. They are young. They have expectations a different generation of veterans may not have had,” VanMeter said. “And now, we’re trying to tool what we provide here to them.”

The hallways are angled so the design doesn't feel institutional and the 56 private rooms are broken up into neighborhoods with military inspired names like Valor.

The hallways are angled so the design doesn’t feel institutional and the 56 private rooms are broken up into neighborhoods with military inspired names like Valor.

Interior glass walls continue the open feeling allowing a view inside the rehabilitation center and the kitchen of the transitional apartment. And it’s overlooked by a balcony. The third floor is where the general rehabilitation and chronic pain patients call home.

One of the hidden gems on the second floor is an outdoor deck. It’s surrounded on all four sides by buildings. But there is direct access to open sky above complimented by wood planking below and planters filled with greenery to frame the space.

A putting green, basketball court and horseshoe pit are all part of the new, outdoor recreational therapeutic activity courtyard.

A putting green, basketball court and horseshoe pit are all part of the new, outdoor recreational therapeutic activity courtyard.

The aquatic center is a prime example of bringing the outside indoors. The main therapy pool is enclosed on one side with glass doors that can be opened up to the recreational courtyard.

The smaller pool is like a high-tech treadmill that can be raised and lowered for easier patient access.

The recreational space outdoors has a multi-surface area where wheelchair patients can practice traversing stone, brick and gravel surfaces. There’s a putting green, basketball court and a horseshoe pit plus plenty of benches – some of them shaded – for those who want to feel the breeze and sun on their face.

Associate director David VanMeter points to the flat-screen TV that connects patients to everything from education to entertainment.

Associate director David VanMeter points to the flat-screen TV that connects patients to everything from education to entertainment.

You can listen to an audio tour of the new James A. Haley VA Polytrauma and Rehabilitation Center on WUSF 89.7 FM.

Lush wood cabinets and flooring help the private rooms to feel warmer and more like home.

Lush wood cabinets and flooring help the private rooms to feel warmer and more like home.

The exterior of the Aquatic Center.

The exterior of the Aquatic Center.

The circular drive entrance to the James A. Haley VA Polytrauma and Rehabilitation Center.

The circular drive entrance to the James A. Haley VA Polytrauma and Rehabilitation Center.

 

Obama: VA Disability Claims Backlog Is Shrinking

Veterans take photos of President Barack Obama as he works a ropeline after speaking at the Disabled American Veterans convention in Orlando, Fla., Saturday, August 10, 2013. (Official White House Photo by Pete Souza)

Veterans take photos of President Barack Obama as he works a ropeline after speaking at the Disabled American Veterans convention in Orlando, Fla., Saturday, August 10, 2013. (Official White House Photo by Pete Souza)

President Barack Obama acknowledged the obvious when addressing the Disabled American Veterans gathering Saturday in Orlando. He noted that there’s still a backlog of benefits claims at the Department of Veterans Affairs.

However, it’s just under 500,000 claims according to the Associated Press. And that’s smaller than the 611,000 claims backlog in March.

“Today I can report that we are not where we need to be, but we are making progress,” Obama said. “So after years when the backlog kept growing, finally the backlog is shrinking.”

A claim is considered “backlogged” if it’s been in the system for four months.

The president also unveiled a  national plan for prevention, diagnosis and treatment of post-traumatic stress disorder (PTSD) and Traumatic Brain Injury (TBI).

Traumatic Brain Injury Military First: A Tissue Repository

Image courtesy of the VA Research on PTSD.

Image courtesy of the VA Research on PTSD.

The military brain tissue bank was established with the hope that scientists will learn more about the long-term effects of traumatic brain injury (TBI) of service members returning from combat.

After more than a decade or war, service members exposed to blasts “are coming home with troubling, persistent problems and we don’t know the nature of this, whether it’s related to psychiatric responses from engagement in warfare or related to actual damage to the brain, as seen in football players,” said Dr. Daniel Perl, a neuropathologist and director of the brain tissue repository, stated in a press release. “We hope to address these findings and develop approaches to detecting accumulated tau in the living individual as a means of diagnosing CTE during life – and, ultimately, create better therapies or ways to prevent the injury in the first place.”

The Department of Defense established the Center for Neuroscience and Regenerative Medicine Brain Tissue Repository for Traumatic Brain Injury at the Uniformed Services University of the Health Sciences (USU) in Bethesda, Md. to advance the understanding and treatment of TBI in service members. 

TBI Questions to be Answered

  • Does TBI lead to Chronic Traumatic Encephalopathy (CTE) – a neurodegenerative disorder that involves the progressive accumulation of the protein tau in nerve cells within certain regions of the brain? As the tau protein accumulates, it disturbs function and appears to lead to symptoms seen in affected patients such as boxers and, more recently, football players with multiple head trauma according to the DoD press release.
  • What does blast exposure do to the brain?
  • Do the different forms of brain injury experienced in the military lead to CTE?
  • What are effective ways to treat and prevent CTE?

You can get more information on donations to the brain tissue repository and their research by contacting the Repository team at CNRM-TBI@usuhs.edu or 855-366-8824.

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