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Spouse starts TBI support group

Experience teaches spouse, who hopes to help others

As a TBI caregiver, Suzanne hopes to give and receive support from other spouses in similar situations. /Melanie Casey

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Living and loving someone with a Traumatic Brain Injury (TBI) can be a challenge. Symptoms range from insomnia and anxiety to violent, unpredictable behavior and depression, all of which can be taxing not only on the one suffering from the condition, but also on his or her spouse.

TBI is defined by the Brain Injury Association of America as "an alteration in brain function, or other evidence of brain pathology, caused by an external force." The most common causes of TBI are falls and car accidents, and more than 1.7 million children and adults sustain a TBI each year. In the military, the most common causes of TBI are bullets, blasts and fragments followed by falls and motor vehicle accidents. According to the Department of Defense's Military Health Care System, more than 106,000 Soldiers have been diagnosed with a TBI since Jan. 2000.

Susanne (who asked that her last name not be used) knows firsthand about the hardships of caring for someone with TBI. More than 12 years ago, her husband, who retired from the Army in 1993 with 30 years of service, suffered a severe brain aneurysm that left him permanently disabled. Following more than six months of inpatient and rehabilitative care in Hawaii (where the family lived when he fell ill), Susanne's husband returned home to Lakewood a changed man. "When he got home," she said, "he wasn't the man he used to be ... that's when the journey began." He can no longer drive. He falls into pits of depression, and his behavior is unpredictable - and sometimes violent. "There are good days," Susanne said, "but it's unpredictable."

No one told her what to expect, and she had to teach herself how to become a TBI caregiver. She took mental health and caregiver classes at Pierce College and discovered "there's more to this man than what meets the eye," she said. Over the years, she has learned how to live with her husband's TBI and said she has had nurses compliment her on how well she takes care of her husband.

She also realized that she has to take care of herself. "I decided after six or seven years that I wasn't going to let it consume me," she said. She makes time for visits with friends and gets plenty of "Susanne time," she said. She also goes to counseling regularly. It's important for spouses not to lose their own identity in the midst of being a TBI caregiver, Susanne said. "Yes, TBI is about your husband. But it's about you, too," she said.

A few years ago, as more and more servicemembers returned home from Iraq and Afghanistan with TBI and the condition made front-page news, Susanne found herself wondering how new, younger wives were handling it. There are moments, she said, "when your household is not sane. It's in turmoil and you look at (your husband) and say ‘I don't want to be married to him.'" She wondered, "What of the young wife with three kids going through the same thing? How does she handle it?"

To help those new to TBI and share her experiences, Susanne is starting a TBI support group for military families. Active duty, retirees and veterans and their families are welcome to attend.  She hopes to create a support system for caregivers and help them find someone they can turn to when they're having a bad day. "I look at it as making a difference for other spouses," she said of starting the group. "I can share what I've learned in 11 years, (and) even I don't help five (people) I hope I can help one."

The group will meet off post to facilitate open discussion. The more informal setting, Susanne hopes, will "allow them to open up and find support from other spouses in the same circumstances." The first meeting is scheduled for March 17 at 6 p.m. at the Barnes and Noble Café in Lakewood. For more information, call Susanne at (253) 459-4330.

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