Embracing the Chaos and Joy: One Nurse's View of Working with People with Brain Injury Victoria Tilney McDonough, BrainLine Page 2 of 2

One committee in particular, the “TBI Family Caregiver Panel,” has been a real education for this seasoned TBI nurse. The National Defense Authorization Act of 2007 mandated the establishment of a 15-member panel to develop a uniform and consistent curriculum to educate family members caring for members of the Armed Forces with severe TBI. Managed by the Defense and Veterans Brain Injury Center, the panel includes medical professionals who specialize in TBI, staff from the Department of Defense and Veterans Affairs and other agencies, family caregivers, and members of the Armed Forces who had a brain injury.

Anne and the other members of the panel have created a four-module curriculum that will include a binder of information, a set of DVDs, and the same information available on The Center for Excellence for Medical Multimedia website. The curriculum covers the basics about TBI, understanding the effects and how to help, becoming a family caregiver, and navigating the system. It’s slated to roll out at the end of 2009. “This has been an incredible project for me since in my career I’ve mostly worked with kids and families,” says Anne. “Focusing on military service members and their families has given me new layers of perspective on caregiving for people with brain injury.”

Finding answers

The biggest challenges in care that Anne has witnessed in the last 10-15 years are the trickle-down effects from changes in medical insurance. People used to stay for inpatient rehab after a TBI for several months; now it’s two to three weeks. “Everything is compressed now. Not only do we have more to do in a lot less time, but the families have to take on much more responsibility sooner,” says Anne. “We’ve had to beef up our outpatient clinics and our family education because patients are home with their families a whole lot sooner than they used to be. Outpatient therapy tends to last a lot longer than inpatient. We try to refer everyone to their state Brain Injury Association, a wonderful community resource”

Collaborating with local networks and organizations has helped her offer more viable long-term solutions to patients and their caregivers, she says. And since she gets to know the families she works with so well, she’ll often link them with other families who can serve as mentors. “Putting families together helps on so many fronts,” says Anne. “The peer mentoring family can guide the new family by providing ideas and resources that worked for them, and, most importantly, they can offer support and empathy since they have traveled a similar path.”

For the past decade, Mayo Clinic has been part of the TBI Model Systems, a federally-funded network of centers that conduct research and provide state-of-the-art services for people with TBI. As part of the TBI Model Systems data center, Mayo tracks people with traumatic brain injury to look at long-term outcome. “It’s been gratifying to learn that the majority of people living with TBI report that they’ve got a few problems, but overall life is good. Maybe it’s not exactly the life they’d pictured, but it’s still good,” says Anne.

Caring and knowing

Recovery from brain injury is often described as a marathon, not a sprint. “I always ask families if they have a website like CaringBridge set up for their loved one, and then I ask if I can follow along,” says Anne. Web services like CaringBridge help people stay connected with family and friends during a health crisis. “Invariably, families say yes. I have found this helpful on many levels. I can learn about the patient — what he was like before his TBI … his interests, his friends, what he looked like. I can also learn about the family, its dynamics, and, on a regular basis, I can also gauge stress levels, which can help me be more effective.”

On their personalized website, families can post updates and photos and keep a blog or journal. With a shared code, friends and extended family can log on to check their loved one’s progress and post their own comments and prayers. Having one place to say what’s happening saves the caregiver from having to place countless telephone calls. And writing about a loved one’s progress or lack thereof can often prove less stressful than having to talk about it.

In addition to learning more about her patients and their families, following along on family websites has also helped Anne clear up misunderstandings. She remembers being present when a neurologist gave a family a certain message about their loved one. She thought what he said had been clear. But when she logged onto the family’s CaringBridge site, she learned that the family had heard something quite different. Because she learned about the misunderstanding, she was able to clear it up before it became a problem.

Stories on the wall

Amidst the cards and photographs on Anne Moessner’s office walls, you’ll find a few of a feisty and glowing young girl named Freda.

Three years after Freda sustained a severe brain injury in a motorcycle crash, her mother stopped by to see Anne, the ebullient nurse at Mayo Clinic who had managed Freda’s care. “Today is the three-year anniversary of Freda’s accident, and I needed to be with someone who understood … someone who has seen what’s happened since that day,” said the mother. The two women hugged. No words were needed to share their joy over Freda’s miraculous recovery. The young girl was about to begin her freshman year at Purdue University.

Such are the stories that make Anne Moessner tick.

See "Flat Freda" Slideshow

To comment or to share your story, contact Victoria Tilney McDonough at vmcdonough@weta.com.

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