Voices of Caregivers of Service Members and Veterans, Part 1

Module 1: Introduction to Traumatic Brain Injury

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 1: Introduction to Traumatic Brain Injury. 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.

COMA

“He actually ended up being in a coma for about three months after the brain injury.”
- Pam E.

“My son had a closed head injury. Initially, he was in a coma. If you’re not in the medical field, it’s pretty horrendous to see your son on a vent and a ventriculostomy coming out of the brain to measure the intracranial pressure. They had to control the intracranial pressure. If it kept going up, they would have to do a cranioplasty. It is horrendous to walk in and see all the tubes and not be able to communicate with him.”
- Cindy P.

QUESTIONS

“In the very beginning, I didn’t want to know anything because I was so scared. But a little while later… the doctors would throw out tidbits to me, like he might never speak again and he might never walk again… but I couldn’t understand why. So then I wanted to understand the part of the brain that was injured and why he was having these symptoms or why he was having this diagnosis.”
 - Patty H.

“Basically, they walked me through the process every day, because I had a lot of questions. I asked a lot of the same questions, and they were patient with me. I was very overwhelmed. So I asked a lot of questions. They kept explaining to me that this is what happened, that they can fix it but that it’s a long process. The doctors themselves were the best source of information.”
- Emily S.

“I had no idea really what kind of injury he suffered. They said there was brain shearing. What’s brain shearing? Because I think if I understood what the medical terms meant, it would have educated me to ask more questions.”
Pam E.

“Something that was really helpful for me was the list of the Glasgow Coma Scale because they used that a lot and I didn’t understand what it meant. People would throw out these numbers — ’Oh, he’s at number 4 or 5’ — well, what does that mean? When I read the list, it’s up to 15. I could watch Pat’s recovery, too, because at the beginning he was 3, and then I could say, okay, now he’s a 4 or 5, he’s making progress.”
Patty H.

“When my son was hurt, I said, ‘What can I expect? What’s going to happen to my son?’ The doctor looked at me, and said, ‘Even we don’t know. The injuries that these guys are coming home with now are new to us. Five years ago, an injury like this would have killed him. He would never survive it. These are young people. They now get better and they survive it. We are re-writing the medical books.’”
- Nellie B.

INCHES AND MILES

“We agreed that the resident doctor could present Jason’s case to a conference of doctors at the University of Maryland. Of course, she wouldn’t use his name. She asked if we would come too, and we said yes. So we’re in front of this whole room of doctors and she finishes her presentation, and the doctors start asking questions. And this one doctor raised his hand, and he said, ‘I was the surgeon who treated him when he was first injured in Balad. I remember him.’ And he said that seeing how far Jason has come and how responsive Jason is from when he saw him, from when they brought him off the field... he said that the brain is a lot more repairable than they even anticipated was possible.”
- Pam E.

“It had been 15 months and he had slowly improved. But he couldn’t talk. He’d kind of start trying to mouth words, but he just couldn’t talk. And so, on October 21st, 2005, I’ll never forget that morning. I came in to the bedroom and I said, ‘Fred, how are you doing?’ And he said, ‘Fine.’ Okay. I think he just talked to me. So I just turned around and went back into the kitchen, got his breakfast, came back in and thought, okay, let me try this again. I said, ‘Fred, how are you doing?’ And he said, ‘Fine.’ It wasn’t a lot at first, but he could talk.”
- Denise G.

“The doctor said to both of us, do you believe in miracles? And I said yes. And he said, then you need to pray for a big one. You need to pray for a real big miracle because your son — we don’t know if he’s going to make it. And he said if I were you, I would let him go. I’ll give him my assistance, but he’s not going to make it. And I said to him, you don’t make those decisions, you don’t tell me he’s not going to make it. That’s not up to you. You go back in there and you do what you said you can do, now, to keep my son alive. And two weeks later, my son opened his eyes for the first time. Three weeks later, he was taken off the ventilator and has never been on another one. We were looking at my son three years ago to now. You don’t even think it’s the same person.” - Nellie B.

TIME STOPS

“He really won’t tell me the whole story because I think he doesn’t want to scare me. But, he brought me a piece of metal back home that was embedded in the wall right behind him. He said it missed his head by a few inches. He said that he thanks God every day that he’s still alive, and that’s why he brought the piece of metal home, to show me that that’s how close he had come to dying.”
- Lynn C-S.

“I had no idea really what kind of injury he suffered. They said there was brain shearing. What’s brain shearing? Because I think if I understood what the medical terms meant, it would have educated me to ask more questions.”
- Pam E.

“Something that was really helpful for me was the list of the Glasgow Coma Scale because they used that a lot and I didn’t understand what it meant. People would throw out these numbers — ’Oh, he’s at number 4 or 5’ — well, what does that mean? When I read the list, it’s up to 15. I could watch Pat’s recovery, too, because at the beginning he was 3, and then I could say, okay, now he’s a 4 or 5, he’s making progress.”
- Patty H.

“My brother was in a minimally conscious state. You hear all these miracle stories and you start getting your hopes up. But then day after day goes by, week after week, month after month, and no sign of major improvements. Meanwhile, you watch as others on the same ward or whom you’ve met continue to improve. You want to be happy for them — and you are, but why is your loved one not improving at the same rate? During these times, take comfort and support from those around you. At my most cynical of times, I would continue to be inspired by the generosity and strength of others.”
- Liza B.

“In the beginning, he thought he was captured. On that kind of heavy medication, he was super-disoriented. Plus, he was injured and he didn’t know about losing his eye. He didn’t know where he was. He couldn’t see. He was strapped down to the bed, and it took eight doctors at different points in time to restrain him because he kept trying to leave.
I had to seriously get down next to him and just explain to him that he was at Walter Reed, because he kept fighting these doctors. He punched out a nurse. It was really bad because they had to restrain him and that’s really sad to see, when you’re all bandaged up like that, to have to be restrained on top of it.”
- Emily S.