Voices of Caregivers of Service Members and Veterans, Part 3

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 3

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.

You need to set goals for your husband and his life; it’s really about what you want to accomplish through therapy. So there are times when I don’t think you should be afraid to speak up. Maybe they’re the expert — the physical therapist or the speech therapist — but you should speak up and tell them what your goals are. If they’re not meeting them, then you should not be afraid to tell them or — if it’s not working out — request another therapist. If it’s just not working out or you feel something’s not right, don’t be afraid to ask for another person to work with.”
- Patty H.

“I wish I didn’t have to work a real J-O-B full time so that I could really jump up and down and do a lot more than I do. But I’m starting to learn the ins and outs politically, and I’ve started really pulling on my Congressman’s ears and my Senators’ ears. I promised my son, and I promised the two families of his best friends, that, until I can’t do it anymore, I wouldn’t stop advocating on their behalf, because it’s going to be around

forever, and I’m not going to be here forever to take care of my son. Somebody is going to have to, and it should be our nation and our system. These kids were not drafted, they volunteered to serve. They deployed, some of them volunteering to go back over and over again, and it’s the least we can do. We are not doing enough, we are not doing enough.

This is my niche. This is where it works. This is where all the pieces fit together, and this is where I can do the most. People say, ‘Well, Adam has been out for a year and a half now, and there’s no reason for you to have to devote so much time to all this.’ I just think to myself, ‘You just don’t get it. It’s not a matter of having to. It’s what needs to be done, and I can do it, and I can do it well. I’m going to do it.’”
- Cyd D.

TAKING CARE OF YOURSELF

“I went and saw a psychologist and that was probably one of the best things I did. It was for two days a week, an hour each session, and she was just… a neutral person. I could come in and say all this stuff was going on, and she would actually help me make decisions as to where to go next or what things to do for Pat. She could stand back, look at everything, and help me make sense of it. That was a huge help for me. It was an hour that was just about me and we could talk about what was going on. She could put things in perspective for me when I couldn’t. I probably saw her for six months.

We got involved in the community. We found a church, and that was a great blessing because the people in the church really supported us while we were there. They invited us to do things in the community away from the hospital. I also joined the women’s soccer team. The hospital provided a place for Pat to be on Tuesday night, and I could get away and play.

Later on, I needed a reason to go to the gym, so we put together a team to run the Army 10-miler for Pat. I had a reason to go to the gym because I needed to train. It’s something for me--I did it last year, I ran 10 miles! We are doing it again this year.”
- Patty H.

“I know you can only tell others so many times about taking a break and getting away from the hospital. But I wish I would have taken more time at the front end of the whole injury because as Mike has improved, he needs me more and more, and I want to be with him more and more. I have less and less time to go about and do my own stuff, whereas when he was lying in the hospital all day with his eyes closed, I should have gone and relaxed and researched and taken care of things. I know you can only tell people that so many times, but it really takes them learning that in order to take care of themselves. It is a big thing for caregivers to realize that they don’t have to feel guilty about stepping away.”
- Meredith H.

“I suppose the most challenging thing is adjusting from what was to what is. That transition was really difficult for me because of lack of information. You start to feel like, oh my gosh, I’m going to have to take care of this person and I’m going to be cut off from the world for the rest of my life because I’ll just have to be at home with this person 24/7. That was really tough, and I wish I would have known before how many options are out there and that you’re not going to be stuck. There are ways to be able to get away and to feel that freedom, and that was a really big challenge for me. It scared me a lot. Being a 25-year-old young woman, married for four years, I just really didn’t think that’s what I had in my future. For me personally, I really had to come to terms with the fact that the Mike that I married had changed and that I had a new Mike. There were a lot of things that were very similar to the old Mike, and a lot of things that reminded me of the old Mike, but this is a new person and I have to have new expectations and new goals, and everything had to shift and change. I think once that all happened for me, I mean, I’m really happy. I love Mike and I love that he’s still here with me and that we’re able to do things, and part of that has to do with our relationship before. What helped was just coming to terms with the fact that things had definitely changed but not always for the worst. I need to be open to the fact that it is a change.”
- Meredith H.

 “Just stay strong and pace yourself, and definitely seek help. Seek a support group and have that network for yourself, because you’re going to need it. You’re in it for the long haul. You’re not going to give them a new brain and everything is going to be better and they’re going to learn everything again. It’s not like an amputation. There’s no prosthetic, and that’s the hard thing to swallow.”
- Sandy M.

“I didn’t do a very good job of taking care of myself, and it didn’t take its toll until about four years later. Now I’m paying the consequences. My blood pressure is high. Physical things are cropping up. During the first year, I didn’t take care of myself.

I didn’t sleep. When I’d go to bed, things would just run through my head. When I finally did go to sleep, I woke up in the morning with reality hitting me in the face, like I can’t believe this is my life. You get out of bed and you just put one foot in front of the other.”
- Denise G.

“No, I didn’t take care of myself, and I still haven’t really, two years later. Now I’m getting to the point where I’ve realized that I’ve neglected myself, just the routine things, like doctor appointments, dental appointments, and physicals for myself. I’ve ended up with a lot of stomach problems as a result. Now I’m trying to play catch-up because I didn’t really take care of myself the last couple of years. That’s been kind of a downer, I guess you could say.”
- Aimee W.

HELPING YOUR CHILDREN COPE

“Thankfully, they’re pretty adaptable, but still they’re kids, and that’s why we’ve had to seek counseling. My son is dealing with secondary post-traumatic stress disorder. He’s very terrified that every time my husband goes in the hospital, he’s not going to come home. So we deal with that. With my daughter, we’re kind of dealing with the teenage issues. Plus she’s pretty angry at my husband.

He’s not who he used to be. You know, I think the key is talking, keeping the lines of communication open, letting your kids express to you if they’re mad, angry, whatever it is. It’s okay. Emotions are okay. Do not hold it in because that’s going to make it worse in the long term.”
- Anonymous

“When Tim was starting to read and do word finding, those games were fun activities for the kids to do with him. They took part in his recovery, and I think that involvement was probably the key factor that kept the children from getting resentful, from being isolated. The kids have told me since then that they had wanted to know about things sooner. They thought that we kept a lot of things from them.

I still think that there are some things kids at that age don’t really need to know and they learned things along the way that they were ready for. But they did want to know. They’re very intuitive. Sharing age-appropriate information meant that they still had a little control in their lives, too. They could then process why Mommy and Daddy had to be away and not go to the dark side of their imagination thinking their worlds were falling apart and not have a clue as to why. I think not discussing the issues is probably the worst thing you can do for your children. They don’t like being left in the dark.”
- Shannon M.

“You know, it’s still a daily thing. TBI is definitely a hard thing to grasp. I think the hardest thing, especially for our teenage son, because maybe he is older, is that his Dad is 37 on the outside, but on the inside he’s younger. Our son is going to continue to get older and get more mature and grow up, and his Dad is kind of where he’s going to be.

I just think a lot of communication is the key. Ask them: Do you have questions? What are you struggling with today? What don’t you understand? We also go to therapy. I stressed to our son that this isn’t going to go away. This is a lifelong disability. We have to learn to deal with it and cope with it, and you can’t do it on your own. You cannot do it on your own. Getting plugged in to support groups that are geared for TBI, seeking out counselors that know TBI and can give you strategies on how to deal with situations, those things are important. That’s what it’s about for us right now. It’s about getting the mental help and the feedback that we need and realizing that, really, we’re not alone.”
- Anonymous

“Once we felt that he was doing well enough and could express his needs and I didn’t have to be there for 12 hours a day, we had a discussion. We came to the agreement that I would be with him when the kids are in school, but it would be fine for us not to be there every afternoon afterwards because we wanted the kids to have normalcy. We wanted them to go play at the park and have activities and things in the afternoon. So that really took a load off.”
- Anna E.

“When my husband was first diagnosed with TBI, he realized he couldn’t do math anymore. So we had to work on math skills. He and the children worked on doing simple math again and learning algebra. Working out math problems helped us come together again as a family. Doing things together brings you close. Even going to all the appointments together helped us bond. It is a trying time, but it does help bring you back together. We are such a close family now.”
- Lynn C-S.

ADDRESSING FAMILY NEEDS

“It hasn’t been done without a lot of crying. The dynamic on the family is awful. It will either make you or break you.”
- Nellie B.

“It’s just frustrating to not have the same kind of relationship, to have to be more of a caretaker than a partner, or a mother/ son or a mother/daughter. You know, people who are injured have all kinds of things going on in their own head, so it’s hard for them to relate to you because they’re going through their own agony. So the frustration of being that person sometimes is just hard.”
- Anonymous

“Intimacy is something that I think a lot of couples with TBI have trouble with. Some too much, some too little — but certainly changes from pre-injury. In our case, there were periods of more emotional withdrawal, whether from the medications or the injury itself. For me personally, helping other families has filled that emotional void. Focusing on the children and focusing on my husband has filled that emotional void in a different way.

Physical touch, I’ve found that massage really helps. When I’m feeling like I’m just out there on my own, sometimes if I go get a massage, then that sort of relieves that physical tension.”
- Anonymous

“You feel very nervous or not so comfortable talking to the doctors about sexuality or what’s happening, especially in the early stages. But it’s a big concern for a wife. It’s a big concern for me, especially because we don’t have any kids yet. So it could mean… who knows… no kids, or it could mean…? It was just a big concern for me.”
- Anonymous

Following a TBI, your service member/veteran may experience effects of the injury that may affect your relationship. Module 2 describes the possible physical, cognitive, emotional, and behavioral effects of TBI. Most of these changes improve over time. Intimacy is the emotional and physical closeness between partners. It consists of both emotional and physical/sexual intimacy.

“Intimacy is something that I think a lot of couples with TBI have trouble with. Some too much, some too little — but certainly changes from pre-injury. In our case, there were periods of more emotional withdrawal, whether from the medications or the injury itself. For me personally, helping other families has filled that emotional void. Focusing on the children and focusing on my husband has filled that emotional void in a different way.

Physical touch, I’ve found that massage really helps. When I’m feeling like I’m just out there on my own, sometimes if I go get a massage, then that sort of relieves that physical tension.”
- Anonymous

“I think that one of the hardest things is that with a brain injury, you step into the role of being a caregiver….. I’ve ended up feeling like mom pretty much and not so much a wife, if that makes sense. That’s been hard for me, because another issue that we have is his judgment sometimes, the things he does. I feel like I end up being mom. ‘No, you can’t go spend all your money at once.’ I hate that feeling because he views me in that way now. I don’t want to be mom to him. So that’s really hard. Sometimes I just wish he would go get more counseling for himself. You know how some of these guys are. It’s like a sign of weakness to go talk to somebody about things, especially being in the Army. They don’t want to admit something is wrong. I’ve tried to tell him, I can’t handle everything myself. So that’s been an issue.”
- Anonymous

TRANSITIONING TO HOME

“We had gotten a pass to come home for a visit. The kids were so excited to see their dad. Then when we came home for good, they were really excited to have dad back at home.”
- Aimee W.

“The biggest challenge? Just the stress of being the only person. It’s hard most days. Being everybody’s memory and being everybody’s person that does everything, that cooks and cleans, and makes sure everybody gets where they need to go, and everybody remembers where they need to go. It’s overwhelming for the most part. You kind of wish that you had more of a partner than somebody you’re taking care of, but it’s not their fault. They can’t help it. They were just doing their job.”
- Emily S.

“Pat’s family did a lot of research for me as far as different things that were available. I really didn’t do a lot of it myself because I was at the hospital. They were trying to find ways to help.

I just think one of the best things I did for Pat is opening up about his injury to everyone and letting everyone support us. I know the head injury has a lot of things that can go on and maybe things that are embarrassing that you don’t want people to know. We started a family Web site — I write everything that’s going on as a way for me to keep track of his progress and to let people know what we need and how he’s doing. It’s been like a record for me.

We still have people involved. I think that’s really important, to let your friends in. Let them help you. Let your family help. Let them be a part of the recovery, because when you see them, you can see it in their eyes. They’ve been as much a part of it as you have. I just think that’s really important.” - Patty H.

“We were fortunate in two regards. One, we have a very close family. They were all there for us whenever we needed them. Our neighbors would keep our 13-year-old daughter when Mike and I had to fly out. So we had a really good support group as far as people wanting to help. If it meant bringing a meal over, that’s what they did.”
- Pam E.

“This is another tool, caringbridge.org. Originally when the injury occurred, all the family was calling. It was just too overwhelming. I couldn’t call everybody every day. So the people at the Fisher House in Landstuhl, Germany told me about this Web site. It was great. You could download pictures, and set up a Web site for your injured soldier and fill it out. Every day I went on there to write my daily journal. That was the journal that I kept.”
- Cindy P.

MOVING FORWARD

“It does get better. I don’t know if it gets better because you get used to it or because they are making improvements. Jason has definitely made improvements. We’ve kind of fallen into a routine, and I guess when you fall into a routine, then you know what to expect. I guess that makes it easier. It does get easier, just because they’re getting better, and they do get better.”
- Pam E.

“He’s been really good. He’s been going to his appointments all by himself. He tells me what happened at the appointment, and what kind of drugs they give him. I really couldn’t tell you exactly what his medications are unless I look in the cupboard. He is to the point where he is doing it himself.”
- Kristen S.

“My son volunteers at an elementary school. He loves children. He volunteers on Monday and Wednesday with his TBI team. He assists the physical education teachers twice a week for three hours.

He also volunteered at an animal shelter, and he would help walk the dogs, bathe them, and sometimes they’d let him give an injection. He has come a long way. I think they’re giving him different options for the future. You know, volunteer work, what he can do with his life every day, how he can keep himself busy and keep using his skills. We all know, if you don’t keep using it, you’re going to lose it. So it’s important to keep him busy.”
- Cindy P.

“There are situations where he wants to go out with the guys. What are 23-year-olds going to do? They’re going to go out and have a drink. With a brain injury, that’s not good because it can affect his recovery, and he knows that. But he’s one of the guys and he doesn’t want to be singled out. He wants to fit in. So it’s very difficult. What I do is tell his friends that they’re responsible for his well-being. I just keep reminding him, and I try to make sure that he’s in situations that are safe and that are going to be successful.”
- Cindy P.

“The one thing that’s been so good for my son is running marathons. When he was at the Wounded Warriors battalion, he was volunteering for Hope For The Warriors. They got him a trainer, and they set him up to run the Marine Corps marathon. They trained him and got him into running, which my son had always hated. He’s constantly running and training. He’s training again for the Marine Corps marathon. He knows that when he’s training, he cannot drink and train. It just doesn’t go together. So that’s a wonderful way to keep the drinking away.”
- Cyd D.

ADDRESSING EVERYDAY ISSUES

“Our employers did let us work remotely when my husband and I took turns being with our son in Texas. It did get a little dicey there for a little while, but they were very supportive. We were very fortunate. I’ve talked to many people who just quit their

jobs, you know? Some people will just automatically quit their jobs and assume that their employer is not going to be there for them. We have to be here with our son or daughter. Many employers are willing to work with you, too; maybe not indefinitely. But it’s certainly an avenue to pursue because it does keep you connected to something a little bit normal, or just to a network of people who just want to be there for you. Both of those things were very helpful to us.”
- Pam E.

“I’m the one by his bedside, but I can’t make any decisions for my son. We finally went to court and fought, because his wife was the one making the decisions and she wasn’t by his bedside. The doctors don’t even know who she is. I said, ‘How can she make decisions when she’s not by his side and she doesn’t know what is going on?’ So I went to court and I had to fight.

Finally the court put in a guardian, a court-appointed guardian for José, and he’s the one who makes the medical decisions and the financial decisions for José.”
- Nellie B.

FINDING MEANING IN CAREGIVING

“It’s never going to be the same as it was… that’s one thing you have a hard time understanding. With a head injury, you grieve over and over and over again, because you realize through these times the things you’ve lost.

On the other hand, you appreciate the things you still have. You know, you really appreciate the little things — I appreciate how you throw a ball now, because it took us forever to teach him to throw a ball. So you really appreciate these things.”
- Denise G.

“I’ve done certain things for myself, but it’s still hard having my own life at this point. I think my life has changed in some ways for the better. I don’t take things for granted, and I feel like my eyes are opened. I can find joy in little things, like possible recovery.

Sense of self is hard right now. I told myself I would give it two years because it seemed most of his recovery would be in two years, so I’m doing all this. But I feel like I know my time will come — this is a commitment. It’s almost like an investment in my husband. With the progress he’s made, I feel like he can be independent and it will be worth it. But I just have to wait a little bit longer. So it gets frustrating, but I keep telling myself that my time will come where it will be more about me.”
- Patty H.

“Nobody chooses this. If I could have chosen for him not to be injured, definitely. But you just take what you’re given and make the best of it.

Other people don’t even get to come home. Their families don’t even get them back. So we still feel lucky.

Initially, the injury is devastating. You don’t feel safe anymore. You kind of feel injured yourself. You just don’t really have any faith in a lot of things, and you just kind of navigate forward. It is what it is. I would just say to make sure that you’re your own advocate and that you don’t wait for someone to come and fix you. Make sure that you’re getting what you need and that they’re doing everything possible for you. It’s a long

process and nobody wants to be here forever. It takes a long time, especially since he’s been on all kinds of deployments. Just navigating the system is hard. You have to keep up with it and take it a day at a time because we don’t know what’s happening tomorrow, we don’t know what’s happening next week, but we get to live day to day. We don’t know where we’re going to be in five years. We don’t know where he’s going to be in his recovery.”
- Emily S.

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.

Posted on BrainLine December 7, 2011

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