1 After Traumatic Brain Injury Helping Someone You Love During Early Rehabilitation
2 After a Traumatic Brain Injury Brain injuries happen quickly. A severe blow to the head is all it takes. In that instant, the injured person s life is changed. Your life changes too. When you heard your loved one would live, you felt relief. Now you may have questions about what happens next. This booklet can help guide you through the coming weeks. Inside, you ll find out what to expect while your loved one is in a rehabilitation (rehab) facility. You ll also find tips on how you can help. The Future May Be Unclear A brain injury affects each person differently. Someone with a brain injury may appear fine but act in unpredictable ways. Or, he or she may seem like a new person to you. Not knowing what to expect may make you frustrated, angry, or afraid. Recovery Is a Process How well a person recovers depends on where and how badly the brain was injured. The patient s efforts and desire to recover also play a big part. The biggest gains tend to occur in the first year. But for most people, recovering from brain injury is a lifelong process. This booklet is not intended as a substitute for professional medical care. 1997, 1999 The StayWell Company, 1100 Grundy Lane, San Bruno, CA All rights reserved. Lithographed in Canada. 2
3 Rehab Is a Team Effort Rehab depends on a team made up of many trained experts. By working together, team members help the patient make the most of his or her remaining abilities. Some of the specialists that may be on your loved one s team are listed below. A physiatrist often heads the team. This doctor specializes in rehab. Rehab nurses provide patient care. They also may train the family to assist with rehab. A psychiatrist or psychologist evaluates the patient s mental skills and provides guidelines for behavior. Physical therapists help the patient improve strength and motor skills. Occupational therapists help the patient relearn daily tasks, such as dressing and eating. Speech therapists help the patient improve language skills and speech. Recreational therapists help the patient find ways to spend leisure time. A social worker or case manager guides the family through the healthcare system. You re Part of the Team Your loved one needs you more than ever now. Get involved. The support of family and friends improves recovery. Meet the rehab team and ask questions. With a little training, you can help your loved one work at regaining skills. Be aware that the rehab plan changes as the patient improves. Check with the team or read the patient s progress sheet each day. Then adjust your support to meet the patient s needs. 3
4 The Body s Control Center The brain runs the body. Breathing, blood flow, and movement are all controlled by the brain. The brain also allows you to think, handle emotions, and make judgments. But after an injury, certain parts of the brain (or the links between these parts) may stop working. As a result, some mental or physical skills may be lost. The loss may be short- or long-term. In many cases, the full effects of a brain injury may not appear for months or even years. The skull is the bone that encases the brain. Personality S peech Movement Sensation Langua ge Hearing Vision The brain stem links the brain and the spinal cord. The spinal cord carries messages between the brain and the body. 4 Roles of the Brain Each part of the brain plays a role in controlling the body. But some brain functions, such as memory and emotions, happen in more than one area. Because of this, the effects of a brain injury may not be clearly defined. Some parts of the brain and some of their functions are listed here. The front of the brain houses emotions and reasoning. This is where personality comes from. The right side of the brain controls the left side of the body. The right side also directs problem-solving and spatial skills, such as judging distance. The left side of the brain controls the right side of the body. It also handles verbal skills. The back of the brain controls vision. The brain stem handles basic body functions, such as breathing, blood flow, and swallowing.
5 How Injury Happens The skull does not have to be harmed for the brain to be injured. Injury can occur when the brain strikes the skull. In many cases, the brain rebounds from the first impact and hits the opposite side of the skull. Sometimes the brain twists on the brain stem. The brain strikes the skull. This may happen if the head hits a hard surface. It may also occur if a person is severely shaken or jerked. The brain rebounds from the impact. As a result, the brain may hit the opposite side of the skull or twist on the brain stem. Types of Damage When the brain strikes the skull or twists on the brain stem, brain tissue tears. This injury may then cause a second type of damage, such as bleeding or swelling in the brain. Healthcare providers try to control the second type of damage to help limit long-term problems. Hematoma Swelling Nerve cell in brain Torn nerve fiber Brain Brain Skull Skull Tearing If nerve fibers in the brain tissue tear, signals can t pass between the brain and body. Lost signals mean lost skills or body functions. Bleeding A torn blood vessel may leak into nearby tissue. This kills brain cells and can lead to a buildup of blood (hematoma). If this blood presses on the brain, it can cut off blood to other cells. These cells also die. Swelling The brain has almost no room to expand inside the skull. If the brain swells, it may press against the skull. As the pressure increases, the brain begins to stop working. 5
6 If Thinking Skills Are Affected One of the brain s main roles is to let a person think, remember, reason, and judge. If an injury limits these abilities, a patient may also be less able to link ideas, process thought, or use language. The rehab team may use special tests to measure the extent of the problem. This helps them set goals for rehab. Even simple tasks, such as combing hair, require a patient to link ideas. Improving Memory One goal is to help patients know where they are. Signs may be posted labeling the bathroom, closet, and doorway. A map showing the patient s room, the gym, and the recreation hall may also be posted. The patient may have a daily schedule. Names of family and therapists may be on the schedule or in a journal. Keep visits short, but try to visit often. Say who you are when you greet your loved one. Ask the same questions often. Go through family photo albums with the person. Linking Ideas Linking thought and action can be hard for a patient with a brain injury. Even a simple task, such as combing hair, may need to be broken into steps. The patient may be asked to identify and pick up the comb. Then she or he may be prompted to use the comb. The team can teach you how to help the patient link ideas. Find out what your loved one is working on. Ask him or her to do the task. Allow plenty of time. Break all tasks into simple steps. Change topics or tasks if your loved one gets confused or agitated. 6
7 Relearning Language Skills Some patients have trouble understanding or using words. These patients may need to use gestures or eye blinks to commu nicate. To help a patient relearn words, a therapist may point to an object and ask its name. If a patient has physical trouble speaking, exercises may help. A speech therapist may show the patient how to form the lips and mouth to make certain sounds. Use picture flash cards with the person. Speak slowly. Use common words. Speak in simple sentences. Stick to one idea and one action. Ask yes-or-no questions. Give your loved one time to understand what you are saying and to respond. Bring the person back to the main topic. Telling stories or getting stuck on an idea is common. Don t talk down to the person. Don t ignore the person or talk as if he or she weren t there. Bridging Past and Present Talk about family, friends, and pets. Bring in items that hold meaning for the person. These may include: photos of family or friends favorite clothes posters music plants and knickknacks 7
8 If There s a Problem with the Senses Sometimes an injury damages the part of the brain that controls balance, sight, or hearing. Or memory loss may keep a person from remembering certain sights, sounds, smells, or tastes. Some patients have trouble handling abstract ideas, such as time.-others may simply forget what they are doing from one moment to the next. Regaining Balance Keeping balance and judging distance are common problems. A physical therapist may help a patient sit up, stand, or walk. They may practice walking on a level surface and on uneven ground or stairs. Some patients may need to use a wheelchair, walker, or cane. Ask the team about your loved one s abilities. Then learn how to help the person work at a safe skill level. Walk with the person. Go slowly. Addressing Problems with Sight or Sound A patient may be sensitive to light or have double vision. In such cases, an eye doctor may suggest sunglasses or prescribe special lenses. Some patients lose vision or hearing on only one side. They may be taught to turn the unaffected side of the body toward the action. If a patient has trouble hearing or is confused by background noise, limiting distractions can help. Adjust the room lighting and window shades for your loved one s comfort. Close the door if he or she is bothered by noise outside the room. Turn off the TV if there is one. 8
9 Dealing with Time Some patients cannot remember from one moment to the next. Others may have trouble planning ahead. Because of this, the rehab team may teach a patient to check a calendar and clocks throughout each day. Patients who can read and write are taught to use diaries or daily planners. Each team member may ask the patient, What day is it? What time is it? Where do you need to be next? Try to visit at the same time each day. Ask the person which day of the week it is when you arrive. Keep a calendar on the wall. Have the person cross off each passing day. Use the person s daily planner to note your visits. Write down what you talked about and any decisions reached. Bring in a clock that s easy to read. A digital display may be best. If the team agrees, get your loved one a watch with an alarm. The alarm can be used to remind the person of meals or rehab sessions. SEPTEMBER Today is: Thursday The weather is: Sunny Time Passes, Patterns Repeat Keeping track of each day may help your loved one see that time passes and patterns repeat. Help your loved one keep a daily log. Suggest a journal if the person can write. Ask the person to draw simple pictures. Record a spoken message together. NOVEMBER 9
10 Behavior Changes Are Common After a brain injury, a person may behave in new or more extreme ways. Patients may become agitated or aggressive. Some may curse, laugh, or cry out of context. Others may show increased or decreased sexual interest. Behavior changes may be caused by damage to the brain. Or they may result from the person s increasing awareness of what has happened. Such changes may be linked to frustration, anger, or grief. Sudden changes in mood are common during the early stages of recovery. Handling Feelings Many patients have extreme mood swings. Others show no change in emotions. As a patient becomes more aware, depression may set in. Team members address the patient s feelings and behavior. A team member may ask an angry patient to calm down. If the person does so, he or she is praised for using self-control. Then the patient may be asked how he or she was able to handle the emotion. If the patient knows, the technique can be used again. Controlling Agitation Agitation and aggression may be stages a patient passes through. If the patient s safety is a concern, restraints may be used. Or team members may take turns staying with the patient. As a patient becomes calmer, the team may do the following: Point out when a behavior is not proper. Then explain how or what the patient could do instead. Redirect agitated actions such as pacing. Divert the patient from tasks or words that are upsetting. 10
11 Regaining Social Skills After a brain injury, some patients see only how matters relate to themselves. They may not be aware of how their actions and words affect others. Group rehab helps patients learn to deal with other people. It also improves speech. Playing games helps patients link ideas and increase hand-eye skills. Try to act in ways that teach good behavior. Also, let the person know he or she is still needed and loved. Try these tips. Stay calm. Do not hold a grudge. Do not always give in to demands. See depression as a stage of recovery. Ignore outbursts of anger. Direct the person toward a task he or she can do. Watch your own behavior. Do not cringe, frown, roll your eyes, shake your head, or clear your throat. Make contact. Hug, hold hands, gently touch the patient s arm. A Sense of Self Help your loved one express who he or she is now. Regaining a sense of self makes the person feel more normal. Do things together. You may want to try the following: paints clay or modeling supplies simple puzzles and games computer games 11
12 If Other Physical Problems Exist Injury to the brain can affect other parts of the body. As a result, patients may have little or no control over their bodies. Muscles may weaken, tighten, or twitch. Some patients may also have physical injuries that occurred along with the brain injury. Improving Posture and Motion Physical therapists help patients regain movement and strength. Improving posture is an early goal. This is because proper posture makes movement easier. Range-ofmotion exercises also improve movement. In addition, they help prepare patients to do tasks. For instance, a patient may work on lifting an arm above the head. This may help the patient dress more easily. Show interest. Ask the therapist how you can be most useful. Remind the person to use good posture. Make sure an affected arm or leg is supported in the proper position. Reducing Muscle and Joint Problems Damage to the brain may tighten muscles or tendons (called contracture). Sometimes an injury causes spasms that jerk or twist affected muscles (called spasticity). Range-of-motion or stretching exercises may help control these problems. Sometimes casts or splints are used to hold a joint in proper position. Over time, this may relax the muscle. Sometimes surgery is needed to release tight tissue. Make sure your loved one does any prescribed exercises or stretches daily. Check the splint schedule. Be sure the splint is on when it needs to be. Splint schedule: -4 hours on -2 hours off -check for red marks Your loved one may wear a splint for part of each day. Check the splint schedule for details. 12
13 If muscles on one side of the face are affected, turning the head toward that side may make swallowing easier. Reducing Swallowing Problems Some people have trouble swallowing after a brain injury. A speech therapist may help a patient increase muscle control in the face, mouth, and throat. The patient may also learn to turn or hold the head in a position that makes swallowing easier and safer. Check with a team member before bringing in food or drink for your loved one. If the person has a swallowing problem, he or she may be on a special diet. Limit distractions during meals. Controlling Seizures If too many signals flood the brain, a seizure may occur. These sudden attacks can often be controlled with medications. If your loved one has a seizure: Help the person into a safe position. Make sure your loved one will not fall or hit his or her head. Do not restrain the person or put anything in his or her mouth. Tell a team or staff member. Knowing When to Assist Your loved one is working hard. Just brushing teeth takes a lot of effort. The patient s body, mind, and emotions are all being challenged. Even so, let the patient do as much as he or she can. Don t worry about spills or how long a task takes. Offer help when safety is an issue. 13
14 Holding Your Family Together Any brain injury leads to some change in the patient. This is hard on him or her. It s also tiring for the family. At first you ll be busy just getting by. But as you adjust, new feelings may emerge. Talk and plan with the rest of your family. Pace yourselves. Your roles may change, but don t give up all the things you hold dear. Get help. Find ways to keep your family moving ahead. Expect Conflicting Feelings As the extent of your loved one s injury becomes clear, you may feel angry or guilty. This is normal. Your feelings may last hours or weeks. Some may even surface again months or years later. Allow yourself and other family members to be honest. Look at your feelings, but try not to dwell on them. You may also want to try counseling. Go alone or with your family. Counseling can help you adjust to this sudden change in your life. Plan Ahead Will your loved one live at home? Will he or she ever be able to stay alone? What s to become of the family? Ask the social worker about government support services. Also be sure to plan for the future. A financial advisor can help. Rethink Household Habits Now is a good time to rethink chores and old habits. Do only what has meaning to you and the family. List the tasks you do each day. Note how often you do them. Then ask yourself: Must this task be done? Does it need to be done this often? Is there a better way to do it? Who else can do it? Can we take turns? 14
15 Keep Hobbies and Friends Life goes on, despite your loved one s injury. Remind yourself to relax. Take time to play. Do things you enjoy. Pound nails. Play music. Try hard to stay in touch with friends. Make new contacts. Talk about things other than the patient. Stay Healthy You need your health. Take good care of yourself. Follow these tips: Exercise a little each day. Stretch. Go for a walk. Also, work out with friends or take a class each week. Eat plenty of fresh foods, such as fruit and vegetables. Skip the junk food. Sleep when you re tired. Rest is not a luxury. A nap can help lighten your mood and give you energy. Ask for What You Need You can t do it all by yourself. No one can. Ask for help, and accept help when it s offered. Don t worry about repaying favors. Ask a friend to listen. Allow a neighbor to run an errand or pull weeds. Believing in the Future Don t forget the rest of your family. Talk and spend time together. Make plans. The future still exists. Look for a realistic version of your dreams. Do you want to travel, go to school, or have a home? Think about your goals. How can you meet your needs given your new roles or the change in family income? 15
16 Ongoing Support After leaving the rehab facility, many patients still need ongoing therapy or nursing care. Talk with the team social worker about ways to help ease your loved one back into home life. Also check your telephone book s yellow pages. Look for community, church, and private outreach programs. Try contacting the following: Day treatment programs Parks and recreation departments Social services Peer support groups Brain Injury Association of America Consultant: Pat O Hare, BS, COTA With contributions by: Linda L. Hay, PT Hilary Kern, MD, Physical Medicine and Rehabilitation Kristen Morrone, MS, CCC/SLP Jennifer Zolp, RN, BSN, CRRN
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