[♪upbeat music♪] [The Facts & Faces of Traumatic Brain Injury] [Training for Caregivers] [♪♪] Welcome to Training for Caregivers on Traumatic Brain Injury. Whether you're a family member or friend who takes care of a loved one or a professional caregiver, what you're about to learn can help make your job easier and more rewarding. This course is designed for you to take at your own pace. At several points you'll be instructed to pause the DVD and read a lesson or module in the training manual. This manual presents facts about the brain and how its injury can affect thinking, behavior and overall health. The manual will not make you a medical expert, but knowing some basic facts about brain injury can help you understand the person you're working with better, including why they may think or act as they do, and this can be very useful in figuring out effective ways to help the person you're caring for, as well as yourself. After reading each module, you'll start the DVD again to see the faces of some real TBI survivors and their caregivers that have volunteered to share their experience with you. Besides giving you examples of the facts you're learning from the manual, these real-life experts will show you how to be a truly great caregiver. Injuries to the brain are very complex. They affect the whole person--body, mind and spirit. As a survivor of a brain injury myself, I can tell you that recovery may take a long time. Providing care for a TBI survivor will sometimes challenge your abilities to the limit. But as you're about to see, it also can be very interesting and rewarding. So let's get started. [♪upbeat music♪] [Basic Facts About Traumatic Brain Injury (TBI) - Module 1] In this first module, we'll start with some basic definitions you need to be familiar with. Then we'll review some facts about who is most likely to get a brain injury and how injuries often occur. You'll also learn some common ways brain injuries are diagnosed and measured and what those terms you may hear, like the Glasgow Coma Scale or Rancho Los Amigos Scale, really mean and don't mean. Please pause the DVD and read Module 1 now. And when you're finished, click the Start button to go on with the DVD. [♪♪] [Introductions] [♪♪] I used to drive semi truck. And 15 December of 2000, I was delivering in California, and I was walking next to my rig, and a 17-year-old kid hit me with his car. And from the tire skid marks they figure he was doing about 70 miles an hour. So that pretty much retired me from everything. It's been a life-changing situation, one that most people probably don't understand the depth of because it's not just one part of your life that changes, it's pretty much every part of the aspects that you've been thinking were normal were now not normal anymore. [♪♪] It happened in 1995 in Miami, Florida. It's been, obviously, years, like about 12 or 13 years, since the accident happened. The boat went up over the embankment of the canal and flipped forward, with the back end throwing the people out from the back. Everybody got thrown out--there was four people in the boat-- and landed on very rocky shore. There was no access by roads for emergency vehicles, so it was a helicopter rescue, so it took a little while. There was four people. One died instantly in the accident, and the other two had relatively minor injuries, and then Todd was in a coma for four months and on life support the whole time. [♪♪] Well, my traumatic brain injury happened on 10/15/02, so in October it'll be five years ago when I was being so stupid because I was with an ex-boyfriend at the time and we got involved with too much drinking, and then he shot heroin, crashed me into a telephone pole which came down on me, causing a fractured skull. Aniko was one of my patients at that time, and she had stitches and was wearing a helmet. I encouraged her, and she could barely stand up at that time. She was wheelchair bound. [♪♪] I was hanging out with a few of my buddies, and we ended up getting some alcohol, going over and saying we were going to go out and have a fun time. So we were out cruising around, and everyone ended up falling asleep. I was a little intoxicated, and I tried driving home. I lived about 18 miles out of town. Probably about maybe three miles away from my house I must have fell asleep, and it was on the straightaway, and I was probably going maybe about 90 or 80. They said I went out of control and wrecked. At first, the EMS people didn't know that it was Otis because he had such facial trauma. They thought it was another kid. The only reason my mom really knew when they were loading him up in the ambulance was he has a tattoo right here that has a CS, and that's how she knew it was him. [♪♪] I was in a car accident, a head-on collision. I don't recall the accident at all. Most of what happened I only know because I was told later. But I passed out. A medical reason--they did all kinds of tests, never did find out what caused it, but I passed out while I was driving and went into the other lane. [♪♪] I was involved in a concussion while participating in football. Where I remember things is the beginning of the game we were running pregame warm-ups, and we were split off into three different groups with wide receivers, the running backs and the linemen. And I'm the running back. We were down running routes out of the backfield, catching passes. Well, the wide receiver is running towards us the same way as we were running at him. My coach threw a very long, deep route and I was running down the field, was running at full sprint. I didn't notice a teammate of mine was running at me at full sprint. All that I've seen as I go down to the field was my son laying down on the ground. He was having a seizure, and he had saliva and bubbles coming out of his mouth and his eyes were very wide open. He wouldn't close them. He wasn't doing anything. As soon as I was just getting to the ground, I closed my eyes, opened my eyes, I'm laying down in a bed, I have no idea where I'm at, I have tubes in my nose to help me breathe, an IV in my arm, no idea what was going on, and I started to freak out. And my mom was right there next to my bed, and she just, "What's wrong? What's wrong?" And I said, "I was just playing football." She goes, "No, no, no." I was like, "Yeah. I was just playing football." And she goes, "No. That was two weeks ago." [♪♪] Sixteen years ago in June I was in a motor vehicle and was hit by a truck--a hit and run. And that's what happened. The accident was on June 12th, '91. It was 16 years ago this last week, and it was a motor vehicle accident in which he was a passenger, and somebody without a license had turned into them, and never heard from them anymore. Erik was on complete life support for almost a month. We were told every single day to turn it off, he would not be here the next day, but we were stubborn and just hung in there. Of course there was damage to the brain everywhere. [♪♪] I was in a car accident back in 1966, so it was, like, 40 years ago. It happened to be the day after Thanksgiving in Kenai, Alaska. I was in a coma for four and a half months, and I woke up the week of Easter in '67 in San Antonio, Texas. She was basically injured on the right side, but then her left side was involved too. She sort of hit the brain-- The tractor trailer hit the vehicle and hit one side, and then it bounced over to the other side. So she was really affected. [♪♪] My brain injury was 18 years ago. I had my 18th birthday on June 20th. One would think 18 years having an injury--you know--what's up with that? One would think you would be over the injury in 18 years, but traumatic brain injury isn't an injury per se; it's a life change. [♪♪] [More Facts: How the Brain Works, Before and After Injury - Module 2] In this next module, you'll learn how the brain is actually made up of several parts which have different functions. The kinds of problems a person has will be related to which parts of the brain have been injured and what kind of injury it is. Now, don't worry, this doesn't mean after completing this module that you'll be expected to know all the medical details about the person you're caring for. But again, some scientific knowledge combined with what you know of the person from your own experience can make you better at solving problems that arise and at coming up with care strategies that will most benefit the unique individual you care for. Please pause the DVD and read Module 2 now. When you're finished, click the Start button to go on with the DVD. [♪♪] [Let Me Do What I Can - Support Me When I Can't - And Please Be Patient] As you continue to learn about the brain, keep in mind its amazing ability to heal or rewire itself over time. Researchers refer to this self-healing and relearning ability as plasticity. As a caregiver you can support the brain's natural abilities by providing interesting activities while also making sure goals and challenges are not too far beyond the person's abilities. Here are our experts again to show you how. Every day, from the time he got up until when he went to bed, I would try and work with him on different parts of his life. We had playing cards that were colored different colors so that we could work on his eyesight. We had memory games that we bought just at the Value Village that were kids' games so we could work on him with the short-term memory. And we would try and watch games on TV so that we could learn his speed of processing--get that back up to a normal speed. Because boy, she trained the heck out of me. I mean, there were times when I was going, "Why are you doing this all the time?" because it was bugging me. But it's because she wanted me to get better. And I know had she not persisted the way she was, I wouldn't be like I am now. Let them try and do a lot of the things on their own before you jump in and try and help them because they have to learn how to talk on their own, they have to learn how to do their own functioning, and if you're one of those people that wants to move them out of the way and get it done yourself because you can do it faster, try to refrain from that, which was kind of the way I was before too. But I learned that okay, he doesn't stack the dishwasher the same way that I do, but he's doing it. One of my good friends made a DVD about our senior vacation. Our graduating class went on a vacation down to San Diego, and she made a DVD, had all the pictures--a big old slide show--and it helped me out to remember a lot about what I did and how I went down there and enjoyed myself with my graduating class. [Aniko] Walking has been the most rewarding because at first, my doctor said, "Oh, I'm so sorry, honey. You're paralyzed." "You're never going to walk again." Not true. Now I can walk just fine. So I, with the help of her parallel bars, helped her to stand up and be able to take a step forward and always encouraged her that, "Every day you walk a little bit and you can improve." Working with him with motor skills. Exactly what are the needs? Most of the need was to force him to use his left side, his left hand. So what that is, it was not only a reminder but instead of just reminding him, "No, use the other one," it was like teaching when they were young. It's like, "Look what you can do with this hand. Try this." "How about, hey, stop here, put this hand here "and reach with your left hand." Everything I did was a learning experience. It could be the simplest thing as playing a game of cards or memorizing a short term of letters or words or playing just little individual games helped me because it not only worked my brain and my thought process and all that stuff, it also helped me with my hand and other disabilities I had at that time. We encourage things. Sometimes she will want us to do stuff, and we'll say, "Maybe you might try that." So we try to do that, have her do as much as possible. Don't do everything for them. See what they can do. And if they're saying, "Let me do it," maybe be there and watch but don't just always be there to do everything for them. That isn't going to help. I think with any kind of healing you need a little bit of a push, and that would be robbing the person of that push that they actually need. I know the rehabilitation says let residents do as much as they can because then they want to be independent. Of course that is still there, but what I'm trying to say is if somebody is trying to do something and getting frustrated and needs help--you know-- you cannot comb your hair with one hand, you cannot do your ponytail with one hand, so you'd rather go out there and help someone. So when you know physically if somebody is not able to do something, then you better go out there and help someone because otherwise then somebody is going to get frustrated or angry or it can lead to more problems. That's the biggest thing that my mom did when I was there is she listened. If I had a problem, if I had something, I would explain it to her, she would then go back, think about it and then come back to me with something of how to fix it or how to improve that. I felt that she listened very well. Even though I was at a big handicap and I wore a blue helmet 24/7 because of my injury, she was there, very willing to give any advice she could or help me out in any way possible. She sat there and she listened to me. She wasn't trying to tell me right from wrong or how to do this or how to do that. She told me what needed to be done or how to go about things. Then I went out and did it. Right now the short-term memory is a real, real problem. There was sometimes where temper was a real problem and it still is sometimes now when somebody makes him feel like he's mentally retarded, like he's dumb, doesn't know any better. And he does; he just doesn't know how to express it. Lots of Post-It notes. [chuckling] And just for my husband and my sister to remind me constantly because I'd forget. So they just remind me constantly. I had so many appointments that I actually needed a secretary to keep me where I needed to be. Just people reminding me and in a nice way because as I progressed in getting better, if they would have reminded me as much as they did in the beginning, it would have been an insult. So it's really something to tread very delicately on because a person doesn't want to feel like-- they don't want to feel like they're crazy. [laughing] And that's exactly what they feel like is that they're crazy. Brain injury people, they have to get to Point C by going through maybe five points. You and I would probably go through A, B and C. They have to go through a whole bunch of points before they get to D. And if you interrupt them in the middle of it, like before they got to C, they would have to start all the way at the beginning again and go through every part of it before they would come to the final conclusion. Sometimes goals are based on what a resident wants to do. So sometimes you talk to them, have a good communication and then see whether they have time to fit in with their schedule to do any kind of activity because you don't want to rush somebody into something which they don't want to do because then it can result in more fatigue and then tiredness. So you don't want to overload a patient with things. You rather concentrate on the activity which they are already doing and then have a good communication so that you can help them with other things they want to do. If you work at it hard enough, you will get control of it. I kept telling her, "I'm going to beat this thing." "I'm going to beat it, I'm going to beat it, I'm going to beat it"--the head injury. But there are times that I start thinking maybe I'm not. It's harder for him because he doesn't remember the rehab, he doesn't remember the stages he's gone through. But as the caregiver being there before his accident, during the accident and after the accident, I can see the progression since that time, in six and a half years, and it's remarkable to think of how far he's come and all the determination that he's had to do it. Probably the most that she did--not the most but the most that helped me was her emotional support because I was very emotionally disturbed--not disturbed but saddened when I got back because there was a lot of things that I was unable to do. My friends were going out doing this, doing that, but I couldn't do it because of where I was at in my instance. So she provided a lot of emotional strength, keeping me up on my two feet: "Hey, one day is another step towards success." I was grieving everything that my life was, and I was grieving not knowing what I was going to be when I was finished healing or how long it was going to take to heal, how much of me that I was I would have back, and how much I could still relearn. We've always tried to encourage her and to give her a positive outlook on things. But in general, as I've said, it's sort of a daily thing. It isn't something like, "We're going to do that today," then we didn't do it yesterday, but it's just constantly. If we see her down or not feeling good, and particularly her mother, she knows the words to say. She knows how to sort of get her back on track. By helping the other person you care for, people and others like them, talking to them as a person, not as a patient, and participating in their therapies with them-- for example, taking a walk around the block with them or sitting down with them and having a conversation with them and not saying all the negative things they hear from other people-- that will really help both the person you care for and you with your relationship. Even if it's a work relationship, you can still benefit from the things that they have persevered through. [Rosmarie] Every time we had a step of improvement, we got greedy and wanted the next step. We really worked hard. But what I want to say is it is possible that doctors make mistakes too and don't know everything, and a person can wake up. So we have to have lots and lots of patience, and don't give up immediately. That's what I would say. I think I would have to tell them just be patient and take your time [chuckles] because it might take a while. But eventually that person will work it out and be good. [chuckles] Yeah, they'll get there. I think the thing is it's patience. If something isn't working or something isn't working right, the best thing I can come up with is just stop what you're doing and sort of back off. And then maybe take another run at it later. On a scale of 1 to 10, I would definitely say 11. [chuckles] Yeah, that's how important. [♪♪] [The Facts about Physical and Cognitive Changes After TBI - Module 3] As I mentioned before, a brain injury affects the whole person, not just what's inside her head. The brain is the main control center for most aspects of our physical and psychological being. In this module, we'll explore what this means in more detail, then learn some ways to help another person adjust to changes in physical and mental abilities following a brain injury. Please pause the DVD and read Module 3 now. When you're finished, click the Start button to go on with the DVD. [♪♪] [Keeping Active] [♪♪] Previously you were introduced to our volunteer experts. Now some of them will talk about how important it can be to help a survivor find something they're able to do and that they absolutely love. For some survivors, this means getting back an ability they had before brain injury; for others, it can be finding new activities or friends to match the new persons they've become. [♪♪] [Keeping Active - Art & Writing] In essence, art was the start of a brand new life for me. It's just a way to live your life with yourself. I mean, I don't even talk about art with other people. I just do it. Do you know what I mean? I just feel as though now it's you. Each person is a specific person, an artist. They all revolve around your mental ideas about society and other people. It's not art if there wasn't other people. So other people reflect off that. I could go on for days talking about this. There's a billion different ways that art could be considered. [♪♪] [Keeping Active - Poem by Bev] [wheelchair whirring] My, what a lovely day. I am in the shade under one of my trees. I am watching a couple of bumblebees. I will look high into the deep blue sky where I will see a plane go by. Say, what a beautiful day. Would you like to come out to play? Everything is going my way. My, what a lovely day. [♪♪] [Keeping Active - Work & Driving] My dad taught me how to really basically drive again and all that and teaching me going out how to be a mechanic and my hand and eye coordination a little bit better. My mom does it for my reading, writing and all that. And they tell me just because I got in that car wreck doesn't make me handicapped, doesn't make me-- I've got a brain injury. It doesn't make me have a handicap. I can still do anything a normal person would do. For me going back to school, I'm sure that my husband had some real concerns about that. But he knows me, and he knows how I am, and that was real important in my healing, not just because I was going to learn anything because I didn't but because I needed to have a piece of my life back for one thing, to give me hope, and I needed to get back from where I fell off the track and at least try to do whatever I can do, to just try. I had a CDL, a commercial driver's license, and I was driving the biggest trucks on the road. Now I'm not the major bread earner for the household. I don't make the high income I used to make. I mean, I have enough problems remembering to shave first thing in the morning, unless I want to grow a beard. So my psychiatrist said I needed my own vehicle, and it costs a lot of money to renew the commercial driver's license, especially the one I had with all the endorsements. And so we were on a fixed income. My wife said it was costing too much. I said, "Well, I'll give up my commercial driver's license "if you give me the pickup truck as my vehicle." And so she did. So now the pickup truck is my personal vehicle, and so I've made it my civilian semi truck. I have lights and horns and-- I may be overdoing it too, but it's my personal vehicle now, and oh, I look forward to every time I can get behind the wheel and go driving. I even took the horns out and mounted air horns into it. [♪♪] [Keeping Active - Sports & Exercise] -I was very afraid of him playing soccer again, even though some people didn't know him from before. He was a very good soccer player. So were his brothers. He played against the Canadians with German teams here. But I was always afraid of a secondary brain injury, so we really waited for a long time. And then when he finally started--and I think this was four years ago-- he started as assistant coach, but then since he wants to win and the team didn't win, he thought, "Well, if I play too, we'll win," which they did. I like sports, so that's what I do. Bowling, golf, soccer. I like soccer the best. Any sport. I like doing that. I have some friends that go to college and they come back and we hang out. We go fishing and all that, ice fishing in the winter, and go camping and ride around in pickups, go hunting and everything. We like to go out and do sports like softball and basketball quite a bit. But it's hard for me now because my T7 fracture, it's hard for me to maneuver around as good as I used to. Challenge has always been a motivating word for me because prior to the accident I had been a gymnast and a cross country runner. So the word challenge to me means go for it. At the hospital the second doctor I had said that I would probably never move again. Okay. And those words were running in my head when I woke from the coma. So as an ex-gymnast, I began to stretch as I could in the bed I was in. Anyway, from there I went to the rehabilitation institute in my wheelchair, and they had told my parents, based on my hospital reports, I would probably never walk again. Maybe I'd learn to mutter a little. Well, a month and a half later I walked out of there saying, "Goodbye." I coach gymnastics as a volunteer now for a middle school in Federal Way. I began coaching gymnastics at a grade school in Auburn February 25th, I believe, of 2003. I was coaching and I lived out of the county I coached in, so I needed to receive a shuttle from the King County Access Bus, which is the public transportation for handicapped people. And on the shuttle was a man that once drove that I instantly connected with. And at first, I had no idea why. But then as he began to share with me how he was born with a brain injury and how he had lived the years of my recovery all his life, we became the best of friends instantly. And he is now my husband. We have been married for just over three years. And as he cares for me and I care for him, it is so nice to be able to just be yourself and, as I said earlier, stop trying to impress everybody with your recovery. [♪♪] [Keeping Active - New Friends] I honestly believe what helped me is just the support I had around me. I had people that I didn't even know before coming up to me and telling me, "Hey, we've been thinking about you. Our prayers are with you." "If you need anything, just ask." And I believe that's honestly what helped me because when I got back, it wasn't just a few people here and there. The whole town of Sequim knew who I was. They knew what happened--everything down to the little bit. I got back the first night into Sequim, and I walked through Safeway, and I must have had seven or eight different people come up to me and ask me if I was Adrien and tell me, "We've been thinking about you. Our prayers are with you." "We're just glad to see that you're home now." The way I found out about the support group was I was having these temper tantrums, and I was scaring my wife so bad. And she found out about somebody from her work, about this head injury brain support group that met every week. So she came home and suggested I go to it. I was in denial. I thought, "I don't need this. Nothing is wrong with me." But she persisted, and then she said, "Would you just go to it once, "and if you don't like it, you don't have to go back." And so, "Okay, I'll go." So we went to the meeting. I sat down and I started listening to these people talk because they first introduced themselves and what happened to themselves and then they would talk for five minutes or so about how their week went and everything. I started listening, and I thought, "These people act and do the exact same way I am." And so I kept going to these meetings, and I went so long they made me the attendance taker. [♪♪] [Keeping Active - Animal Friends] We have a beautiful dog. She is one year old. She just had her birthday. Her name is Bailey. Now, I do have a cell phone. Of course I do a lot of activities. My screen saver has Bailey. Immediately if I ever get lonely, Bailey is there. [laughs] Yeah. She is a beautiful doggie, a one-year-old golden retriever. She's so special. [laughs] [Jay] I think her attitude has always been great, but sometimes she had like a moment, a time when she was at home, and then sometimes she would watch TV and then sometimes she didn't know what to do. She needed to do something. So getting a dog has helped to keep her more occupied, so feel being loved. And now after they have known each other, they are like very much good companionship. Bailey likes to follow her. Even in the evening when she wants to say goodnight, then Bailey wants to jump onto her bed and give her a kiss. So that makes her feel much better. Well, if you are helping some resident achieve their goals, then they are so wonderful because then they are on their own and they are fulfilling their dreams, they are happy. In fact, then they don't bother you much because if they are happy, then you don't have to care much because they are happy. [♪♪] [The Facts About Emotional and Behavioral Changes After TBI - Module 4] You saw how a brain injury can change physical and mental abilities. Because the brain is also the center of emotions and the complex processes that control behavior, changes often will show up in those areas as well. Emotional and behavioral control can present some of the greatest challenges to both the survivor and the caregiver. To complicate things even more, while some changes are due to organic injury, others might be psychological or emotional reactions to trauma and stress. In this module, you'll learn a good, all-around method for helping someone learn to adjust their emotions and behavior so they can get along with others and feel good about themselves. Finally, you'll get tips on how to recognize and get help if post-traumatic stress disorder or PTSD is creating a challenge. In addition, you'll learn what to do when issues related to aging, substance abuse or physical or mental disabilities get in the way of recovery. Please pause the DVD and read Module 4 now. When you're finished, click the Start button to go on with the DVD. [♪♪] [Trust] [♪♪] As you've just learned in the manual, the emotional and behavioral consequences of a brain injury can present major challenges for the brain injury survivor and for you, the caregiver. As you'll hear next, one way to avoid some of these problems is to be trustworthy. Consider for a moment how you'd feel if you were suddenly forced to depend on someone else for your basic needs and safety. You'd probably want to know the other person will be there for you when promised, doing the things you need. Also, because many of us survivors cannot always trust our own memories or behavior, we need to place trust in our caregivers to set boundaries and sometimes keep us from hurting ourselves or others. Listen as our experts discuss this very important issue of trust. I think that trust builds up with time, with little things you do for someone. I think he cares so much because, for example, I got a wonderful Christmas present [laughs] and a beautiful card that went with it to prove it. [chuckles] And I always feel great every day. I get a wonderful breakfast, wonderful lunch, super dinner. So happy. I help her physically, for example, in the morning with her splint. Some of the things she can do herself, but I still have to watch her so she does not fall. My responsibility is to see that she gets everything what she needs. And if she needs something from the store or something, then I like to go and do it right away rather than keep it pending because I saw that with the traumatic brain injury patients what happens is if they want to do something and they are not able to, then that becomes a stress. So in order to reduce the stress, you offer them things which they need and make them comfortable so then their stress level stays down and low. Crowds used to not bother me a bit, and loud noises didn't bother me a bit. But now if I go into a grocery store or a Walmart store or any store and it's really busy, I sort of freak out. And then in the beginning we also had to have a safe place in the store so that if there was too much commotion or too many people or too much activity in the store, especially like a Walmart-- those are huge with activity--we had a bench that we would know if we got separated or if he just had a timeout, he would go to that bench and just wait there for me. And we have a safe place to go to so if we get separated in the store, I don't have to start running up and down or walking--I can't run anymore-- but walking up and down all the aisles looking for her or looking for the person I'm with. I say, "Okay, if we lose each other, this is our safe place, over by this bench." "If you lose me, you go here. If I lose you, I'll go here." And then when you're looking, go to that place and look. And it works. With traumatic I think, as I said earlier, it's good to be very compassionate and very caring and have a lot of patience. If a resident is angry, it doesn't mean you have to be angry. You have to control yourself and find out the reason why she or he is angry. Because of the type of person that he was before with playing sports and being very active, it was very difficult for him to realize that he wasn't going to be active anymore, he wasn't going to be able to do the sports or do the automotive things that he used to do, and a lot of who he was was gone. And so I think that's when he started thinking about how mad he was that he was in the situation that he was in, and that's when the anger started surfacing. And he didn't know how to control the anger or how to direct it or who to direct it to. Oh, I rant and rave and break things and scare everybody, especially the cats, my wife, myself. And then I start--especially when I break something, I go, "Well, that was stupid. Now I've got to fix that too." [chuckles] He has a really short temper towards my mom, even though he knows that's his rock. He turns to her for everything, even in his anger. I used to just not care about a lot of things. Someone could say something mean or anything, and I'd be like, "Oh, whatever." But now I've got a really short temper now. If I don't like it, I'll say something about it and I'll blow up. I just have a really short fuse now. That kind of would get me mad because I get mad at my mom or my dad now. I don't like that anymore. He wouldn't allow anybody else to help him. He always called on our mom when he couldn't walk and things like that, and he was kind of ornery to her. But now that he's healing and he's starting to remember how to treat people, she doesn't let him do that to her anymore. He's outgrowing that kind of orneriness towards my mother, and he now talks to her. And if he gets too frustrated, she just says, "Timeout. Five minutes." "If it frustrates you, don't let it go beyond frustration." "Just stop what you're doing and go back to it." For anger management, like I said, as a caregiver if a patient is showing anger, then you don't need to argue with the patient. You never argue with the patient. If somebody is getting angry for something, then you are in a situation that you rather walk out of the room and then go back and approach her again later on. That will be the best way to manage somebody's anger. Sometimes I wonder because I push her so hard to the limit so many times-- As a matter of fact, I always wonder how she gets through it. It is a difficult situation, and it's very difficult considering it's your spouse and the person that you never expect to have that happen with. So you're not only dealing with the brain injury, but you're also dealing with the shock of that happening. And those two things together can be very powerful. And it's another reason why it would be easy to walk away. But I didn't [chuckles] and I'm glad that I didn't because he has worked through that a lot, and now he's able to kind of control his anger a little bit more. Sometimes he removes himself from the situation or I remove myself. If he's not leaving or if he's not calming down, then I will go to another part of the house, or if it's really bad, then I'll leave. I myself try to distract him with a game, like you see I have standing on the table Chinese checkers. It's a real good thing that calms you down. You have to concentrate, you have to think, and yet it's simple. That's a really good thing. I try to bring up a different subject. You have to be very careful that you don't get angry yourself, or it will carry on. I know this is hard for some people, especially like brothers, because, "You know how this is. You did this before." Well, now you can't. And it makes the person feel like they're not as good as they should be so then the temper flares up more. It doesn't make it better, so you really kind of have to put your own feelings aside. That's how I deal with it. I kind of say, "Okay, that's silly." And I think again this is my lazy part because I think, "If I make his temper worse, I might have more to clean up." [laughs] I did find myself doing the same thing where when we would go to the store and he would throw a temper tantrum because he wanted to buy something, to make the temper tantrum stop I would go ahead and give him whatever it was that he wanted at the store. Well, that was reinforcing negative behavior. And it took me a while to realize what that was until actually I was in dog obedience school and learned about negative reinforcement for your animal. And I started thinking that's true because the more he would fuss, the more I would give in to it. With other caregivers, I would say they have to be passionate and caring. You have to treat residents as part of your family or even like friends. Be very close to them. Don't take advantage of their condition. Be respectful but at the same time be nice to them. The only thing I can say is that you have to just keep working, and you have to try and put yourself in their shoes. I've always tried to treat him with respect and with dignity, and I've tried to treat him the way that I would want to be treated if it was reversed. [♪♪] [The Facts About Supporting Recovery - Module 5] We've reached the final module, and you've learned a lot by now. Module 5 gives you a chance to tie it all together by thinking about strategies that support overall well-being and how to create and maintain a safe and supportive environment. And we've saved one of the most important topics for last: How to take care of yourself, the caregiver. Please pause the DVD and read Module 5 now. When you're finished, click the Start button to go on with the DVD. [♪♪] [Caregiver Care and Rewards] [♪♪] This final segment with our experts is focused on your needs and well-being. They'll now share with you some of the rewards and joys of their work and what they do when they need a break. I think the whole thing has been-- the time has been rewarding. We've made it 40 years, so that's an accomplishment. Some people play golf, they have different hobbies, they work on old cars. And this is certainly not a hobby with us, but it's a vocation that we have invested in, and we've made it this far. My most rewarding experience was when I took care of her a couple of months and then family called and told me, "We see a great change in her." "She is doing so well." And her family told me, her dad told me, her physician told me, and even her care manager where she goes for day care, they called me and told me, "She is doing so wonderful," because she seemed like a new person. Certainly for me it's from being told, "Turn off the life support," to see Erik playing sports, from being told, "He will never walk, he will never talk, he will never eat," and almost feeling like if you don't do what this person tells you, you're kind of dumb if you don't turn this off because there must be something wrong with you. And if you're stubborn enough and hang in there, there's rewards by seeing the person getting better. You know? Some of the best things when we've had conversations is I remember one time him saying that he wouldn't have gotten to the point that he's at now if I hadn't helped him while he was going through rehab. It's been the gamut of really wonderful, wonderful feelings like you're happy you can do anything and make my son's life better to feeling exhausted and like, "What am I going to do? I can't do this anymore." So huge gamut of feelings. In the morning, there's a YMCA club here, so at 9:00 in the morning--I am a member--I am in the pool. [laughs] So one hour I am swimming in the water, and I think I feel so great. [laughs] So that's my stress reliever. When I come back at 10:00 after a swim, I feel so great. I'm ready to take the challenge. When it gets really, really, super tough, I do sometimes do a stretch and say, "Joy." You have to concentrate on a word. It doesn't have to be joy; it can be whatever. It can be just a number. And stretch because when you say it, you kind of have to concentrate on what you're saying, and you have those few minutes to kind of let go of things. It's almost kind of like maybe yoga. Not one person can do this. It's a family effort or a group effort. It has to be not just one person because it will burn out the one caregiver. It needs to be an entire family that steps in and helps the person with the brain injury because of the frustration of the way they used to be and the way they are now. It just gives you your life back, even for a few hours, to help you kind of regroup and have the patience with your loved one that had the brain injury. Well, you absolutely need to find something to take care of yourself, and I do have those things. Sometimes when I leave here I go immediately to a movie, and that's one of the things that I found way back when he was in the hospital and when he was in the long-term rehab program. Sometimes being there in that first year was really stressful because he was really confused and really got agitated, sometimes didn't know where he was. In the first, I would say, six months he wasn't really aware of where he was, and there were some very interesting--I will say, looking back--experiences with that. But anyway, we got through it all. But I would feel so stressed when I left the hospital, and I kept thinking, "What can I do to just decompress?" And it was to stop and see a movie. I would go to a 10:00 movie at night if I could find one and just sit there and forget about everything, and I would feel much better when I left. And I still do the same thing, as I find it works the best and it's something you can do by yourself, spur of the moment, you don't have to make plans with other people. I just go by myself. In the beginning I couldn't really go out too far because of the care that he needed. But now that he's able to do things on his own, it's kind of if I leave something for him to eat or if he has something for dinner, then he's okay, so that I can go out and do something a little bit more. Another thing is we've met a lot of great people along the way, particularly in the support group. There's some really great people. I guess I've never met a survivor or caregiver that I didn't like. They're just great people. I do have to admit that I enjoy a lot of the sport activities he goes to because I help out with soccer, and I keep score at bowling, and I am the caddy at golf. That's why I'm kind of one-sided. But I get to walk a lot there, and walking is another good thing. So walking and laughing. Sometimes I will do gardening, and I will involve my residents and show them what I am doing. Or sometimes I'm cutting the grass or doing some work outside. Sometimes I get them involved. They can look what I'm doing. Just work around the house, some kind of activity. They like to watch. Now that Erik does belong to some groups, like on a Wednesday night, I have almost two hours with another mother. [laughs] We sometimes just complain. [laughs] No. We talk about whatever comes to mind. And if they happen to have in this group, if we're very lucky, then they have a barbecue, a potluck or something in the group, and we actually get to eat somewhere--wherever we want to. And we can even share a glass of wine. One glass together. [laughs] And so I think I'm a lot different at my work because, like I said, I work in a law enforcement place, and I don't feel the stress from the job as much as some people do because it's not going to bother me tomorrow. When I get in to work the next day, there's going to be different cases to handle and different things to do and paperwork that I have to complete. But the major things, even what some people might think are major, are no longer major to me because major to me is, "Is my husband going to live?" "And if he does, what kind of life is he going to have?" That's major. And so most daily problems are just trivial. And that's been the biggest change with me. I maintain a lot of friendships and try to see my friends as much as I can. I started having an all girls night at my house about once every four months or so because I had trouble seeing everybody because I just didn't have the time. So everybody decided that they would bring food if I had it at my house. So we have a great time, and we do this about every four or five months. You need to learn how to let go of things, like I said, for me housework [laughs] because I used to like it like in a hospital--everything very, very clean-- and I just, "Okay, I'm too tired now for cleaning this dust." "I'm going to sit down with him and watch a TV show." And I also take shortcuts with cooking. You just kind of have to do that. You really have to do that because you cannot tire yourself out so much. You won't be of any help to somebody else when you can't take care of yourself. [♪♪] [Conclusion] Congratulations. You've completed this caregiver course on traumatic brain injury. I hope you're excited about trying some of the ideas you learned today. Keep in mind that there is a lot we still don't know about the brain, and new discoveries are being made every day. You might want to make a habit of looking for books, videos or news articles about TBI at your local library or on your computer just to stay informed, especially when you're facing a problem and looking for a new approach. You may also want to review the manual and DVD from time to time, especially when you run across new challenges or as the person you're caring for begins a new phase of recovery. And remember, while the knowledge and attitude of medical specialists and survivors obviously are important, it's you the caregivers who provide the daily support and foundation we need to rebuild our lives. On behalf of all survivors of brain injury, the stars of our film and I want to thank you for all you do for us each and every day. [♪♪] For more information, contact Washington State Aging and Disability Services Administration. [♪♪]
Posted on BrainLine September 30, 2009.
From the Washington State Department of Social & Health Services, the Aging & Disability Services Administration, and the Department of Information Services. Used with permission. All rights reserved. http://www.adsa.dshs.wa.gov