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The Forgotten Survivor (Part 2)
September 19, 1989, a date I will never forget, is the day my whole life changed. I am the spouse of a severe brain-injury survivor. The past eighteen months have been a time that is most difficult to put into words. No one (except for another spouse) can fully understand the pain, frustration, loneliness, isolation and exhaustion that I have felt. I have had to continually fight for what is rightly ours - payments by insurance, Social Security Disability benefits and the continued best management of my husband's care.
I am convinced that not all those who work with brain-injury survivors are fully knowledgeable about the day-to-day behavioral problems a family member encounters. While the majority of professionals do have empathy, families are not always "listened" to through the long journey of rehabilitation.
In order to understand, from a family member's perspective, one must truly listen and then risk the price of becoming involved. It is much easier to disregard problems voiced by the family or to make judgmental statements about family interactions. The biggest breakdown in communication that I have found occurs at the time a patient is discharged from the rehabilitation center. The family is left with no support system as they enter into one of the most crucial times, in terms of rehabilitation, since the injury.
As a spouse, I have watched as my husband received treatment from every aspect of acute care and continued rehabilitation; I.C.U., surgery, various therapies (physical, occupational, recreational, and speech) as well as psychological and vocational counseling. Meanwhile, I have remained on the sidelines. I have dealt with exhausting phone calls, paperwork and necessary case management. In addition, I have had to drive thousands of miles to visit my husband and provide continuing rehabilitative care. As if this is not demanding enough, I have also had to struggle to maintain a home, keeping some semblance of normalcy to daily family life, being both mother and father to our children as well as a caregiver.
Another burden placed on the family is the role of educator. It's necessary to educate other family members, friends and even some professionals on the devastating effects of traumatic brain injury. At times, I've wanted to wave a flag and say "Don't you see me? I'm here and I'm hurting also!"
I would like to say that while we are attempting to provide survivors with the best comprehensive care possible, we are forgetting the other trauma victim - the family. We must address the family and their needs and attempt to provide them with better immediate education and support systems. We must view the whole family as injured, for truly they are.
I have found that resolutions to problems do not come easily. Therefore, it's necessary to live up to the term "survivor." Don't give up! Resolve to make a difference:
I believe that we can network and support each other especially as spouses of brain-injury survivors. We can reach out and encourage each other as we all share similar circumstances.
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