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Voices of Caregivers of Service Members and Veterans, Part 3
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Module 3: Becoming a Family Caregiver for a Service Member/Veteran with TBI
The quotations below are from caregivers of service members and veterans like you. They were collected from Traumatic Brain Injury: A Guide for Caregivers of Service Members and Veterans, Module 3: Becoming a Family Caregiver for a Service Member/Veteran with TBI. The guide was developed to help you, the caregiver, cope with your new role as a caregiver — to provide the information you need to care and advocate for your injured loved one and to care for yourself in the process.
The guide was developed by experts, survivors, and experienced caregivers along with representatives from the Department of Defense and the Department of Veterans Affairs.
To see the whole guide, click here.
STARTING YOUR CAREGIVER JOURNEY
“You’re the person who knows your family member best. That’s what my neurologist told me. He said you’re going to have to help us here because you know him best. You have to let us know if he’s hurting, if he’s not hurting, if he’s waking up, because you know him best. So you’re going to really have to help us here to know what’s going on with him because he can’t tell us.”
- Denise G.
KEEPING PAPERWORK TOGETHER
“I developed my own filing system. Every time Jason gets a new medication, they give you a medication list that tells you the side effects and all of that. That goes in the medication information slot. Every time he had surgery, that information went into the surgery history slot. I actually took it upon myself to create a file on the computer of every surgery that he’s had, what they’ve done, and the date. I documented every seizure that he’s had. I carry that with me so that when someone says, ‘Well, what are his surgeries? We need a list of his surgeries. We need a list of his seizure history’ — it’s right there. I give it to them. I have a filing system for his orders. I have a file for his profile. Definitely keeping everything organized early on is helpful, and keeping a daily journal of what’s happening, who you’re talking to, whether he had a good day or a bad day, he started eating today, he took 10 steps today. I have a list of every single appointment that he’s gone to from day one, and I just keep everything. He has his own file cabinet.”
- Sandy M.
“I observed another wife… she had binders that were for the medical stuff or for things like the Power of Attorney or different documents that you would need. Then there were different binders for therapy, because you do get worksheets, especially for speech therapy. I’ll usually carry one binder if I travel. I’ll bring all the special information with me on the airplane. Also, the list of medicines is really important. A lot of information is sent on e-mail. I keep a separate folder for Army e-mails in my e-mail account so I can always go back and look. In the beginning, I bought a book to put business cards in. You
meet so many people. People hand you a card, in case you need anything, and some of those people I’ve actually called because I do need things. You can buy the book at an office supply store that holds up to 100 business cards. I have three of them full now, after a year and a half. I carry these little books with me so I always have phone numbers. I’ve also put phone numbers in my e-mail contact list — I try to put them in two different places, so I don’t lose things.”
- Patty H.
BECOMING AN ADVOCATE
“As caregivers for my brother, my family and I were his voice when he could not speak. This could be anything from hanging signs in his room that reminded nurses and therapists where Ethan was missing his skull, to helping with rehab, to filling out paperwork, to going to JAG officers to discuss Power of Attorney issues. Every day, seven days a week, it became our lives. It’s easy to fall into a groove. Sometimes that groove is comforting, but sometimes it makes you complacent. It’s important to stay on top of the situation and not take things for granted. As a caregiver, you know your loved one and his or her treatment plan the best. You can easily recognize when something is working well or when something is wrong. Never hesitate to acknowledge improvement or voice a concern, always ask questions about a procedure with which you are unfamiliar, and continually seek out benefits to which your loved one is entitled. Information is not always volunteered to you; if you don’t ask, you might not receive. Being a caregiver means being an advocate. You’ve already committed yourself to caring for your loved one; it comes naturally that standing up for him or her should be part of that care.”
- Liza B.
“Basically you have to take the well-being of your loved one into account or you’ll get lost in the shuffle. There’s a bunch of people here in the hospital and they’re injured. If you don’t keep up with your loved one’s therapy, you will get lost in the shuffle because there are so many needs to be taken care of. You have to be your own advocate and the advocate for your loved one, and make sure he’s getting everything he needs.”
- Emily S.
“Try to keep a cool head when you are speaking on behalf of yourself or others. Know what you’re talking about. If you don’t, then ask questions and be willing to learn. The more you sound like you’re angry or ‘just complaining,’ the less others will listen. If you are receptive to someone, often he or she is receptive back. This is what maintains a level of respect and credibility.”
- Liza B.
“This is all part of getting the facts. Understanding the facts will make you communicate better with everyone. If you’re really involved, I think the doctors have more respect, they’re more likely to listen to you. They feel like you’re concerned.
This is an excerpt from Traumatic Brain Injury: A Guide for Caregivers of Service Members and Veterans, Module 3: Becoming a Family Caregiver for a Service Member/Veteran with TBI. The guide provides comprehensive information and resources caregivers need to care and advocate for their injured loved one and to care for themselves in the process. The guide was produced in collaboration with The Defense Health Board, The Defense and Veterans Brain Injury Center, and The Henry M. Jackson Foundation for the Advancement of Military Medicine. www.traumaticbrain injuryatoz.org.