Voices of Caregivers of Service Members and Veterans, Part 2

The Defense Health Board, The Defense and Veterans Brain Injury Center, and The Henry M. Jackson Foundation for the Advancement of Military Medicine
Voices of Caregivers of Service Members and Veterans, Part 2

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.

DIZZINESS

“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.

“He was dizzy. He had balance problems. In the first four months, maybe six months after the injury, we just never knew what was going to happen from one moment to the next, and it was like a light switch going on and off. One minute he would be pretty normal, and the next minute it was like somebody flipped a switch and he was dizzy and losing his balance and nauseated and couldn’t remember things, and he was confused. It was the darndest thing.” - Caroline M.

VISUAL AND AUDIO ISSUES

“He had visual field deficits right after the injury. They’ve since gotten a little bit better, but he still has visual field deficits. He lost hearing in his right ear, so he can’t hear sometimes when I am trying to talk to him.”
- Aimee w.

“As far as training for him for his left side neglect, when we would eat, he would put everything on the right side, and I would move everything to the left side to help him learn that. In the bathroom, I moved everything to the left side of the counter. So that was definitely a suggestion from the staff, to get everything to the left side so that he’s using that training.”
- Sandy M.

“He’s getting a laptop and he’ll be using a special program on it, which the vision therapy here has provided for him. It magnifies everything.”
- Meredith H.

SEIZURES

“I wish the doctors had educated me about seizures early on, because the likelihood of him having seizures was pretty high give the type of injury he had, and I had no education. And the first seizure he had, I thought he was dying. I had no idea what was going on.

“There are so many things — like if you lack sleep or if you have too much caffeine or if you drink alcohol — that may be triggers for some people. I think there should be education, too, about the different kinds of seizures, like what they are and what they look like … for me, it was very scary the night Pat had a seizure. Everyone has a seizure threshold, but, for some people, once you have a brain injury it can drop way down. They’re more concerned about seizures in the first three weeks because those can be more dangerous. It’s important for family members to know you’re not out of the woods even after the first few weeks. Pat’s was at four months and the husband of one of my friends developed seizures almost a year after his injury.”
- Patty H.

MEMORY AND OTHER COGNITIVE ISSUES

“Processing is very slow, just taking things in — he would repeat things over ad over.

“You try to do everything for them. They’re trying to do things and you’re tired … then you start over again trying to do everything for them to speed things up, which doesn’t help. They need to do things for themselves as much as possible. Rehab is the main thing.”
- Denise G.

“He has what they call apraxia, which is one of the many cognitive deficits that have occurred. He has issues with sequencing; for example, if he were going to make a sandwich, he wouldn’t know how to put these things in order like you and I would, he would get confused. He wouldn’t know what to do first, what to do second, like when to cut a sandwich in half and how to pick it up … the sequencing.”
- Cindy P.

 “He has severe memory issues. He has a PDA to keep him straight on what appointments he has, what medications he needs to take, things like that. That’s helped him a lot.”
- Meaghan L.

“His biggest problem is naming. He has a hard time naming anything. So we have picture cards. We go through the cards all the time, just to get him to name an object. We can even go through the house or if we take a walk, I ask him to name things … what is this? This is a sidewalk. What is this? This is a tree. What sort of tree?
- Patty H.

“He has a PDA, and he does make lists, but that’s a battle in itself. Early on I had sticky notes everywhere and lists of things that he needed to do when he got up in the morning, things that would need to get before he left for his therapy, that kind of thing.

“And over time I see that we’re regressing in that department, so I’m actually in the process of getting those lists back out because he definitely has a memory issue, even with taking his medication every day. There will be times that he forgets.”
- Sandy M.

“He has his talking watch because he has some issues with his vision. So his watch tells the date and the time. And he also has a beeper that’s preset by speech therapy, and it goes off five minutes before he has an event, like therapy or something scheduled. The beeping, the auditory cue, lets him know to look at his book, which is just a three-ring binder notebook. It has his schedule, like Monday through Friday and a time on one side. So he picks the day and then looks at the time according to what his watch says, and then he knows where he’s supposed to be.”
- Meredith H.

“We would play Trouble, where you have to count how many squares you move. We would play Connect 4. We played Phase 10, Skippos, Uno, and sequence games. We played board games where you have to count your spaces. In the beginning, one of the things we did was we got the little children’s blocks where four blocks make a picture, and then anther four blocks make another picture. In the beginning, he couldn’t put the four blocks together to make a picture. He couldn’t figure out what picture when with what. I mean, he’d have an airplane with a ladybug. He also had trouble putting the shapes in the right size hole. When you think about it, you’re thinking this is very easy, but it definitely was a challenge for him.”
- Sandy M.

“The most important piece of equipment he has is his cell phone. I said, ‘How are you going to have a phone if you can’t read and you can’t do the numbers?’ And he said, ‘Mom, you use call voice command.’ I’m thinking, gee, who has the brain injury here?

“He had to tell me and I thought, oh, my gosh, you’re absolutely right, Shane. He’s the one that came up with that. Not even the doctors brought that up.

“We do have to key in the phone numbers. If he wants a friend’s number or asks for that, he’ll say, ‘Okay, here’s my phone number. Call me. When you call me, I’ll know that’s you and then I’ll have my mom key in your name. Or here’s my phone, put in your name and key in your number so I can call you.’ And it works.

“And that is our safety net because whenever he is away with someone that I’m not really sure about, I make sure that I call or he calls so that we keep that open line of communication.”
- Cindy P.

“It’s hard to describe the things we take for granted day in and day out, just being able to take care of our own selves, like brushing our teeth, washing our hair, knowing how to do those things and when they need to be done. We take that for granted, but that’s something I’ve seen that Mike has really been able to master again. It has improved tremendously. At first, he knew what a toothbrush was for and what a hairbrush was for, but he would never have remembered, ‘Oh, I need to brush my teeth.’ He would never have thought about that. But recently, that’s something he knows. After he eats, he’ll say, ‘Oh, I need to brush my teeth.’ He’s more self-aware.”
- Meredith H.

SPEECH AND COMMUNICATION

“When he started to speak again, his speech was impaired, wasn’t good. The first time he said a word, one day, like a Friday, he was saying a word. On Saturday, he was doing phrases. And on Sunday, he was doing sentences.

“To me, he does not sound like he did before the brain injury. He’s clear. He can carry on a conversation with you. If you talked to him, you would probably think he was just fine. I know there’s a difference in his speech, but it’s not enough that an average person would know he’s got a brain injury.”
- Pam E.

“One and a half years later — he can speak now. He can have a conversation. He is just starting to spell now, which is still improving. His comprehension is very good. In the beginning, he couldn’t even understand language. He’s still having a lot of trouble reading, so we’re still working on that. He can’t read at this point.

“He’s never been embarrassed about his speech. One thing I did early on was to buy him a cell phone and I got him to call a lot of his friends. I think that has helped, to be able to call people and talk to them. Some of them saved the first message he left them — they were just crazy. But I think that helps, just being able to stay in touch with people that are familiarity and being able to communicate with them.”
- Patty H.

“The children wanted to be involved in his recovery. They wanted to help read stories, help him with the word finding. One of the things we did was write the words on little sticky notes, and we put them on all his different things. He was really having trouble naming his workshop tools, so we labeled all of his tools. It was something the kids could quiz him on.”
- Shannon M.

“To improve our communication, I had to learn to make shorter sentences. I ramble a lot. So I had to learn not to ramble… to ask myself, what am I thinking? I had to really consolidate my thoughts before I approached him on a subject. That has helped our communication a lot because he’s not way out there in left field zoning out because I already lost him at sentence two.”
- Shannon M.

“I used to have him sit in his wheelchair once he started talking and read articles from the newspaper to me while I put on my makeup. Getting him to learn how to read and follow the line was important. If it didn’t make sense to me, I’d say, ‘Oh, wait, wait, wait, I think you missed something.’ And he’d go, ‘Oh, yeah, yeah,’ and he’d go back up. We probably did that for at least a year. Every time I’d put on makeup, he would come in and sit down and read an article to me.”
- Denise G.

“He couldn’t read or write. He can now, after two years of therapy — it’s a very slow process, but he can recognize signs, and in time he was able to write his name and his Social Security number and his phone number. Now, mind you, if you show him a sign and it has numbers on it, it takes him a while to even understand what that is. He learns with repetition and sometimes those signs have no meaning to him, especially if there are words with the pictures.

“Now, he can see that’s the McDonald’s sign, that’s a Wendy’s sign, and he surprises me sometimes. He’ll say, ‘Well, that’s so and so.’ ‘Now, how did you know that?’ And he says, ‘Well, it just looks like it is.’”
- Cindy P.

“While in the hospital, he stuttered when he would get angry or frustrated. He would often forget his thoughts. He would be on a train of thought and he’d just forget where he was going, which caused him to be frustrated. So you really couldn’t have a two-sided conversation with him early on because he’d want to be talking the whole time, and God forbid he loses his thought.”
- Kristen S.

EMOTIONAL ISSUES

“He’s very blessed that he has retained his personality and his speech. He does have anxiety — with the anxiety comes a little depression. He also has a short fuse and frustration. Sometimes we still see some PTSD mixed in there, and that kind of intertwines with the TBI. Some of those symptoms kind of intertwine.”
- Cindy P.

“If I try to talk to him about issues with our family or the relationship or whatever, he can’t handle it. Emotionally, he just can’t deal with that kind of stuff. He does have mood swings occasionally, some of which have not been so pretty. I think sometimes the fight or flight kind of thing kicks in, and then sometimes he has actually left the house. Little things that might sit normally and not aggravate someone will aggravate him and he’ll get upset about it.”
- Aimee W.

“As time went on — probably about two years after the injury — we started seeing the anger coming in. I think he started to understand the frustrations he was having… the troubles. The anger got bad. Unfortunately, what I tried to do was keep it behind closed doors. The anger accelerated. Instead of trying to get help right off the bat to keep it tame, it probably took us at least a year to get it under control. He still flares up, but it’s nothing like it was before. A strategy that was suggested for dealing with his anger was to keep him abreast of everything that was going on. He couldn’t tell me he felt out of control, and still to this day he has trouble telling me what his feelings are. So I’m trying to make sure that he’s aware of everything that’s going to go on, and we try to keep a routine. Routine is very important…..it keeps him soothed. Trying to talk to him in a calm voice helps, but it’s not always easy, you know, because if you accelerate, of course they do too. The anger has gotten better over time. And now what we have is… more like frustration outbursts.”
- Denise G.

“People just don’t know a lot about brain injury, and I try to educate them in the sense that there’s a lot of things emotionally that Jason doesn’t have control over, and you have to learn to not take it personally because it’s not a personal attack. It is what it is. Not that it’s excusable or that it is acceptable, but Jason is also learning good public behavior: what’s okay to say, what’s not okay to say, and when enough is enough. That’s definitely where I come in with the cueing.”
- Sandy M.

“I think that early in his injury — especially with severe TBI — to me, watching him go through his recovery was like watching a child go through a really rapid growth phase. He went through that toddler phase when he was just learning his ADLs (Activities of Daily Living). Then he went through the adolescent phase where he was gaining some independence and learning his bounds. Then he went through that teenage phase where he was trying to take control of his life and impulsivity became a real issue. Finally, now we are in the adult phase where things have begun to balance out. There are still good days and bad days, but more good days as we move forward.”
- Shannon M.

 “I know that there were times in my husband’s recovery that he and I both wrestled with a number of emotions. We definitely went through all the phases of grieving because you grieve for the loss of those characteristics and those dreams that you had before, and that’s all normal.

“At one point he said to me that it would have been easier had he passed away, and there were times when I went there too, but it’s not something that you want. It’s not something that you’re wishing for. But, these are feelings that I think any couple, any person that’s gone through a traumatic event like this, any caregiver that’s watching a loved one suffer like that and feeling this state of entrapment or loss of control, would normally have in this situation.

“You need to acknowledge that you have these feelings. Not that you want to fulfill them but just that you’re not going crazy and you’re not a bad person for having them.

“Just stay open and know that these feelings, and that feeling of being trapped in this sort of hopeless, hopeless place, will go away. Know that there are a lot of blessings to be found through this recovery process.”
- Anonymous

“He was very emotional, and still is when he stops and thinks too much about stuff. But he was very, very emotional. He would hear a song and just cry for no apparent reason. That was kind of hard to deal with because all you can do is comfort. “
- Sandy M.

OTHER ISSUES

“My son’s biggest problem was the spasms. My son was very tight. All his muscles were contracted. He slept with his foot on the floor, because his leg would not stretch out. His arm was contracted to him, against his body. You couldn’t pull it apart from his body His fingers were tight and closed. He could not open his hands.

“They gave him a muscle relaxer. My son’s legs now move. He’s completely relaxed, completely relaxed. It’s amazing what it does for my son.”
- Nellie B

“He had to learn bladder continence all over again, and that was really tough. I bought a bunch of pants that snapped down the side, the kind the basketball players wear. So he’d be sitting in his wheelchair and right there was the urinal. It was very accessible — those snap pants were a lifesaver. It took a lot of time and patience. Every so often we’ll have an accident, and it’s just like, okay, things happen.”
- Anonymous

“Ultimately, you will end up being the therapist. You will end up being the caregiver. But they do make improvements and you will see plateaus, and then all of a sudden you’ll see improvements again and then plateaus.

“When they’re making a lot of improvements, work it. Work it hard. Just do whatever you have to do, if it’s physical or mental. I mean, work it. And then when they plateau off, don’t get discouraged and think, oh my God, everything’s gone again. You might take a couple of steps backward, but you will hopefully, eventually make some more steps forward.

“The brain is just amazing.”
- Denise G.

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.

Posted on BrainLine December 7, 2011

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