A Service of brainline.org
Voices of Caregivers of Service Members and Veterans, Part 2
Page 1 of 4 | Single Page
Module 2: Understanding the Effects of Traumatic Brain Injury and What You Can Do to Help
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 2: Understanding the Effects of Traumatic Brain Injury and what You Can Do to Help. 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.
Making Therapy Work
“My goal — and I’ve made this clear to the team — is for Mike to go to the transition program, where they have to live basically on their own. They have to be able to take care of all their living skills, and be able to get in and out of their bed, and to and from therapy, and that kind of thing. I would really like for him to get to that point because I would like for him to prove to himself that he’s able to stay alone and take care of himself and prove to me that he’s able to stay alone and take care of himself for a short time.”
- Meredith H.
“The whole team would come in almost every morning to discuss the day and how he was and what was going on. Then they’d have a big weekly meeting. So I felt very involved with his care and I felt like I understood what was ongoing on, on a daily basis, That gave me a lot of comfort.”
- Patty H.
“A really super thing for us in terms of communicating with the hospital staff — and the hospital already had this installed in the room — is a big dry erase board. Some people use it and some people don’t. We use it to make a list of all the things we want to talk about with the doctors. That way, if I’m not in the room when the doctors come by on their rotation, they’ve got the big list right there and they can see it clearly. That helps keep the communication going.”
- Anne E.
“He was plateauing on a therapy level. We realized that what the therapists were doing — you know, they had a book and they were going through checklists — was like being in school to him. So we suggested that the therapists try working with him on something he wants to learn. They said fine, tell us what he wants to do. So I asked him one night. I said, ‘Jason, what would you want to learn first if you had to prioritize?’ Well, he wanted to learn to use the telephone and he wanted to learn to use the remote control on the TV. We told the therapists. They got him an adaptive remote control and we got him a phone. He learned to use them both within a week. So the therapists were good. They said, ‘We’ll work with you. What do you think is going to help him?’ They didn’t know him before the brain injury, so they relied on us to give them as much information as we could on the kind of person he was so they could determine what would work for him through the therapy. You have to educate the professionals on what he was like.
- Pam E.
“You know what? I think that a big key in rehabilitation is to keep him busy because what happens when he’s not, he gets very down. He sometimes feels hopelessness because he can’t drive and he can’t just get in the car and go. These guys are used to being on the go 24/7, being in the Army and part of the war itself, and to come back and have to sit in a wheelchair and have to depend on your mom or your spouse to take you everywhere — you know, you can’t just go in the car and get a hamburger. It’s very difficult. What keeps him sane and keeps him going is sports. He’s on a sled hockey team, the San Antonio Rampage, and he travels. Sports have been a huge, huge outlet.”
- Cindy P.
HEADACHE, SLEEP, AND FATIGUE
“He had tremendous sleep problems, which is extremely common. He met other people who were in similar situations. They’d all be up on the computers or watching TV in the middle of the night, doing things that make their symptoms worse. We went for 25 years with no TV in our home so we were not TV watchers. He would sit and channel surf. And the reason he channel surfed, he said, was because he couldn’t concentrate long enough to watch anything very long. He was just going from one thing to another.”
- Caroline M.
“Sleep and fatigue were probably the biggest, most constant problems, with the other things sort of waxing and waning. And the neuropsychologist explained to me about the fatigue, that when you have cognitive deficits, your brain has to work so hard just to process something that’s just routine for the normal person that is causes a great deal of fatigue.
“So it took him a very long time to get over that fatigue, and he still has it at times. But when we first got home, he would be completely wiped out when he came home from work, and every single weekend was a wipe-out. And then that improved, and it was just Saturday that was the wipe-out. Now, most days are pretty normal. Most weekends are pretty normal. Every now and then we hit a time where he just kind of crashes.”
- Caroline M.
“He deals with migraines right now on a daily basis, and I think that stress plays along with it. He can’t deal with too much at one time. He’s overwhelmed. But he deals with the fatigue factor. He’s on limited hours right now, so he can only work four hours out of the day. It’s very light duty. That’s where we’re at, right now.”
- Meaghan L.
“He had severe dizzy spells and vertigo from the head injury. Driving in a car was really hard for him. The dizziness in the care went on for three to four months. It slowly started to go away.”
- Emily S.
This is an excerpt from Traumatic Brain Injury: A Guide for Caregivers of Service Members and Veterans, Module 2: Understanding the Effects of Traumatic Brain Injury and What You Can Do to Help. 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.