The forgotten survivor 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, 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 behavioural 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 judgemental statements about family interactions. The biggest breakdown in communication I’ve found is when a patient is discharged from the rehabilitation centre. 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; ICU, surgery, various therapies (physical, occupational, recreational, and speech) as well 23 / B R I D G E M A G A Z I N E
as psychological and vocational counselling. Meanwhile, I have remained on the sidelines, dealing with exhausting phone calls, paperwork and case management. In addition, I’ve driven thousands of miles to visit my husband and provide continuing rehabilitative care. As if this is not enough, I’ve also had to struggle to maintain a home, keeping some semblance of normal 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 so it’s necessary to live up to the term “survivor.” Don’t give up! Resolve to make a difference: Educate others — then they will have no excuse for their ignorance. Seek good counsel — employ a lawyer knowledgeable about brain injury to aid you in the resolution of problems that are too big for
you to handle alone. Channel your anger — focus on worthwhile ventures, become an advocate, and call your representatives and politicians. Be informed of current legislation and do your part to be heard. Don’t lose confidence in yourself — remember that criticism comes freely to the one who serves as primary caregiver. Remember that it’s easier to judge another when you haven’t walked in their shoes. Try not to take it personally. Forgive others — try to restore broken relationships. You’ll need all the support you can get. Demonstrate your knowledge of brain injury — you should expect to be treated as an equal member of the rehabilitation team. If you are not being heard, seek a new professional support system. Remember, this is your loved one that you are concerned for — you know them better than anyone else. You live with them and face all the day-to-day problems that no one else sees. Network — get into a support system with others who do understand. 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. - Nancy Crinnion, R.N. No part of this article may be reproduced or retransmitted in any manner and/or for any reason without the express permission of TPN, Inc. Email them at: TPN@tbi.org