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Brain Injury: Early Stages of Recovery

Mary M. Castiglione, PT Cynthia C. Johnson, MA, CBIST Many thanks to all the people with brain injuries who helped with the book.

Sometimes You Need A Helping Hand If you or someone you love has had a brain injury (BI), you will want this book. The information here takes you through the early stages of recovery and tells you what you can do for him and for yourself. You will learn what happens to the brain when it is injured and what to expect as the person gets better. When you have questions, ask them. Much comfort can be found in knowing what is going on. At this point, you may still be very shocked that the brain injury has happened. You may be confused and scared. Brain injuries happen without warning and often involve trauma to other parts of the body. For a while, you will not know how fast or how well recovery will go. Improvement is different for each injured person. During this time, take good care of yourself. Your help is very important, and you want to have enough energy for the long haul.

We do not intend to be sexist, but to keep the text simple, we often say “he” or “him” when talking about the brain injured person.

Table of contents About Your Brain.................................................................................................4 How your brain works .....................................................................................4 When the brain is injured................................................................................5 Locating the area of brain injury.....................................................................7 Severity Of Injury................................................................................................8 What To Expect In The ICU.................................................................................9 Family Tips during the ICU stage...................................................................11 Understanding Early Recovery .........................................................................14 Early Treatment..............................................................................................16 Agitation..........................................................................................................18 Confusion........................................................................................................23 Understanding Your Feelings............................................................................30 Stress..............................................................................................................30 Grief.................................................................................................................31 What you can do to cope...............................................................................35 Getting Ready To Leave The Hospital...............................................................37 Preparing for care at home...........................................................................38 What Lies Ahead................................................................................................39 Choosing the Best Care After Discharge...........................................................40 Family tips if returning home after discharge..............................................42 A Word About Seizures.....................................................................................43 A Letter To Family.............................................................................................44

About Your Brain How your brain works Your brain is the control center for your whole body. It lets you see, hear, taste, touch, smell, think and move around. Each area has special tasks to do, and different areas work together to carry out daily functions. Because your brain is so important, it needs good protection. For this, it has a hard outer cover and a shock absorber. The outer cover (your skull) is made of hard bone, and the shock absorber is fluid. This fluid, called cerebrospinal fluid (CSF), surrounds your brain and spinal cord and cushions them against bumps.

skull brain

cerebrospinal fluid (CSF)

brain stem spinal cord spine

At the bottom of your brain is the brain stem, the part of the brain you canâ&#x20AC;&#x2122;t live without. It controls consciousness and functions such as breathing, heart rate and swallowing. The spinal cord connects to the brain stem and runs down your back. It is protected by the fluid (CSF) and backbones (spine), and it supplies nerves to your body. Nerves carry messages to and from your brain that let you do things like move around and feel (heat, cold, pain, etc.). 4

When the brain is injured An injury to the brain is called an acquired brain injury (ABI). Each brain injury is different, but some things are common to most. Here is what often happens. Many times a traumatic brain injury (TBI) happens when the head is struck with great force. The brain hits the skull then bounces around inside. If the skull cracks or breaks open, it is called an open head injury. If the skull does not break, it is a closed head injury. areas commonly damaged in TBI coup contrecoup

Injury – the accident, or trauma Damage – the harm caused by the injury Plasticity – the brain's ability to change, grow or make up for damaged areas. Patients and families often hear doctors say, “You’ve had a brain injury, but we don’t know yet if there is brain damage.”

Most damage results from bruises, bleeding and tearing of the nerve fibers that connect brain cells. Sometimes blood collects between the skull and brain or inside the brain itself, cutting off oxygen to brain cells. This causes some cells to die and some to go into shock. At this point, the brain begins to swell inside the skull. Because there is no place for the fluid to escape, pressure builds up. 5

A gauge called an Intracranial Pressure (ICP) Monitor may be put inside the skull to monitor the pressure. Medicine may be given to reduce swelling and further damage. The patient may need surgery to remove fluid or blood. Sometimes a piece of the skull is removed to let the brain swelling go down (craniectomy). The bone is stored because it may be possible for the surgeon to replace it later. Sometimes the person is given a drug to make them stay asleep for a time. This keeps the person still while the body adjusts to the sudden trauma.

You may be hearing some new words these days. Here’s what they mean:

blood collects

Hematoma – a blood clot Contusion – a bruise Hemorrhage – bleeding Diffuse Axonal Injury – tearing of the nerve fibers that connect brain cells. Hydrocephalus – fluid build-up in the brain

increased pressure

Once the brain’s swelling begins to go down, it may keep on going down for months. Brain cells which have died often will not recover (permanent brain damage). Other brain cells are in shock and will start working again after they have time to recover. No one can tell just how long it will take for these cells to begin working again. There can be

brain improvement for years, and patients may learn new skills to replace the ones they’ve lost.

Locating the area of brain injury Some health team members may be able to tell which areas of the brain are injured by watching what the person can and cannot do. There are other ways to tell where and how much the brain has been injured: CAT Scan (Computerized Axial Tomography) a special X ray which gives serial pictures of the brain so that all areas can be seen, especially the damaged ones. MRI Scan (Magnetic Resonance Imaging) a scan which also gives pictures of the brain by using a strong magnetâ&#x20AC;&#x2122;s effect on the brain tissue. EEG (Electroencephalography) measures the electrical activity in the brain and can tell where irregular activity is happening (slowing of the brain waves as well as rapid activity)

Severity of Injury A few methods are used to describe serious injury. One of these is the Glasgow Coma Scale (GCS). The scale has three tests and the best response to each test below is given a score. The GCS is the total of the three scores. GLASGOW COMA SCALE Best Eye Response (4)

Best Verbal Response (5)

Best Motor Response (6)

1. No eye opening

1. No verbal response

1. No motor response

2. Eye opening to pain

2. I ncomprehensible sounds

2. Extension to pain

3. Eye opening to verbal command

3. Inappropriate words

3. Flexion to pain

4. Confused

4. Withdrawal from pain

5. Oriented

5. Localizing pain

4. Eyes open spontaneously

6. Obeys Commands

Another way to describe severity of injury is length of time the person is unconscious. This can be difficult

to determine if the patient is given medicine to keep him asleep while the body adjusts to the sudden trauma.

Severity of Injury

Loss of Consciousness

Glasgow Coma Score

MILD

Brief or None

13-15

MODERATE

Up to 24 hours

9-12

SEVERE

24 hours or greater

3-8

What To Expect In The ICU If the injury is severe, your loved one may go into the Intensive Care Unit (ICU). While there, he is watched for any changes, and treatments are done to help prevent more damage from the injuries. The first visit in ICU can upset you if youâ&#x20AC;&#x2122;re not told ahead of time how he looks. He may have a lot of tubes and machines hooked up to his head, throat and body. These keep track of and carry out body functions such as breathing or taking in nutrition. You can relieve some of your stress by asking the doctor or ICU nurse to explain the purpose of this equipment. If still in a coma, your injured loved one may seem to be sleeping or only be partly aware that you are there. If he has had surgery, his head may be shaved in one area (the hair will grow back), and stitches or a bandage may be seen. Other injuries may cause his body to be swollen or bruised in a number of places. Your loved one may hold his arms and legs stiffly in one position or appear to have very relaxed, heavy limbs. He may wear splints on his arms or legs. If he is moving around a lot in bed, he may be softly tied with cloth restraints. The ties may upset you, but they keep him safe. Visiting time is limited in the ICU. The nurses will tell you when you can go in. Between visits, use your time to prepare yourself and your loved ones for the next few days and weeks. As soon as his medical status is more stable, he may be moved to another hospital unit or to a place that provides rehab therapies. 9

pump for IV fluids

IV fluids

vital signs monitor

intracranial pressure gauge

endotracheal tube

urine bag

chest tube drain

breathing machine (ventilator)

Family Tips during the ICU stage If the doctor says itâ&#x20AC;&#x2122;s OK, show your caring by touching and speaking to your loved one. It may seem strange to touch and talk to someone in coma, but these are important types of stimulation (see p.16). Talk to your loved one in a soothing tone using normal speech. Calmly remind him where he is and what has happened. You may also read old letters or favorite stories to him or talk about current family events. Play relaxing music for short periods of time. Make recordings of other loved ones and friends, and play them for him. You might record children who are too young to visit and household sounds like talk around the breakfast table. Keep periods of stimulation brief. Five to 15 minutes is often long enough. Take care of yourself. Youâ&#x20AC;&#x2122;re in this for the long haul. The best thing you can do for your loved one right now is save your energy and stay healthy. Many people say that this early stage after the injury is an emotional roller coaster. This is normal. While in this stage, let others know how you feel. Think of them as your support system. They may be family members, close friends, your doctor, co-workers, clergy or anyone who can listen to your feelings and offer a shoulder or helping hand. Ask visitors to leave messages for your loved one in a keepsake book.

Eat well and try to get plenty of sleep. You can release some emotion by writing down or recording your feelings. Later, you can look back and see how far you've come. Go ahead and cry. Let yourself feel whatever you want to. Give yourself permission to talk with family members of other brain injury patients. Allow yourself to leave the hospital. Give other members of your family attention and support. Children will be upset by the trauma but may not show it until later. Explain what has happened in a way they can understand. Pay attention to the parts of their lives not related to the trauma. Keep life as normal as you can for the kids. Try to stick to the same homework schedules, play times and meals. Find an easy way to let others know of your loved one's progress. This helps friends or co-workers who may feel like they "don't know what to do or say." Leave a voice message on your phone, or ask a friend to post updates on an internet site for you. Then you won't wear yourself out giving the same information over and over.

Prepare friends ahead of time for the changes in how your loved one looks and acts. Some people feel awkward around hospitals but do fine once they know what to expect. Give a list of your personal or household needs to a good friend or family member. Ask them to help you with errands, child care, grocery shopping and household chores. Health team members will ask you details about the patient’s medical and social history. Get copies of their reports because you may need them later. Call your local Brain Injury Association for resources and support. You may call the Brain Injury Association, 1-800-444-6443, or visit their website, www.biausa.org. They are a good source of information about brain injury and can put you in touch with local support groups and other family members of brain injury survivors.

Focus on goals, and cut out time deadlines. You can’t rush the brain’s healing, but you can be a valuable member of the health team. 13

Understanding Early Recovery During this time you may feel flooded with new information, especially if your loved one has other injuries or complications. The outcome is hard to predict and the doctors may often say, "wait and see." If your loved one has a Disorder of Consciousness (DOC), he won't be able to actively participate in a rehabilitation program yet. DOC's are states of decreased arousal and awareness after a severe brain injury. Being unconscious or in a coma are two phrases familiar to most people. Depending on what his needs are, he will receive supportive treatments (described on the next pages) to assist with recovery. When a patient begins to wake up it is often referred to as emerging. Doctors can do special tests to determine your loved one's arousal and awareness. He may move through these states slowly and changes may sometimes seem very small. He may even go back and forth between these states for a bit.

Arousal refers to a person's level of involuntary responses (reflexes) to things happening within his body and the space around him. Special nerve pathways deep in the brain are responsible for a person's level of arousal. Awareness refers to a person's ability to receive information and then voluntarily respond to it. Higher nerve pathways are responsible for a person's level of awareness. 14

DISORDERS OF CONSCIOUSNESS COMA • Eyes are closed • The person cannot be aroused, speak, or respond to what is happening to or around him • It is common to have movement in the face, arms and legs that are not under the person’s control. Family or friends often think these movements are intentional and believe their loved one is responding to them. But this may be only the muscles moving in response to some brain activity VEGETATIVE STATE • Eyes may be open some of the time, but the person can’t focus on an object and he can’t follow movement like your finger moving in front of his eyes • The person isn’t aware of things happening around him • He can’t speak, although he may often make sounds • Sometimes he may respond to stimulation, like touch, but it’s not on purpose • He can’t move on his own or do what someone asks, like ‘blink your eyes for yes’

MINIMALLY CONSCIOUS STATE • Eyes are open and the person can focus on objects and follow movement • The person has a slight awareness of himself and things that are happening around him • He may be able to respond to simple requests like ‘wiggle your toes’ and make sounds to simple yes/no questions • He may be able to hold something in his hand like a cup, but not know how to use it.

Early Treatment SENSORY STIMULATION You will hear the term "stimulation" a lot. It means anything that your

loved one can pick up through his senses (hearing, seeing, smelling, tasting or touching). The purpose of this treatment is to help him become more aware of what is around him. The health team will take care to control the amount of stimulation so it's not too much to handle. They can also give you helpful tips to assist with sensory stimulation.

NUTRITION and BLADDER CONTROL

The patient will have a feeding tube to provide nutrition during this time. He will also need a small tube (called a catheter) to drain and collect his urine.

POSITIONING and SKIN CARE

The health team will move the patient's position frequently to prevent his skin from developing pressure injuries (wounds). They will also keep his skin and mouth clean to prevent irritation or infection. You can help with this.

RESPIRATORY CARE

Some patients need a breathing tube (endotracheal tube) and machine (ventilator) to assist with breathing. The tube is also called a "trach" (pronounced trayk). A health team member will do treatments to keep the tube clean and free of infection. The patient will be weaned from the ventilator if he beglns to breathe on his own. If the trach remains, you may be taught how to help keep the airway clean.

RANGE OF MOTION EXERCISES

These gentle exercises help keep the patient's joints flexible when he is unable to move his body or limbs on his own.

FAMILY EDUCATION

Health team members will work closely with you to make sure that you feel comfortable and safe assisting your loved one with his needs. Practice and ask a lot of questions so you feel confident about carrying out these new tasks before he leaves the hospital for home or another facility. Wash your hands a lot and use the sanitizer in his room to

keep your hands and nearby objects clean to avoid infection.

Waking up Later, when your loved one wakes up (emerges), he may become very restless or agitated. This is a response to the inner confusion caused by his brain injury. Each personâ&#x20AC;&#x2122;s response is different. During this stage he may behave in ways that upset you and others who care about him. When your loved one is in this stage, he may shout, curse, hit or bite. If in bed, he may rattle the side rails; if out of bed, he may pace. This is not something that he has control of, and it is a normal part of brain healing. Donâ&#x20AC;&#x2122;t be alarmed if cloth restraints are placed on his wrists and ankles. These protect him and keep him from pulling out things like IV lines and other tubes. Medicine could be used if he is hurting himself or others.

The agitation may seem like a step backwards, but itâ&#x20AC;&#x2122;s not. It is a step toward recovery, and in most cases, this phase will end after a brief period of time. In the movies and on TV, it often seems like patients go from coma straight back to their normal life. This is not so. People with serious brain injuries improve slowly.

Some people may not wake up all the way while in the hospital. Sometimes these patients are moved to another treatment center like a skilled nursing facility or a long term care center.

If you had a brain injury you may not remember very much about this stage of recovery. Family and friends may tell you about things that you said or did that may surprise you. Reading about this stage will help you understand how changes in behavior are part of the healing process. You will learn about steps the health team and your family took to help you.

Family Tips Make the space around your loved one seem more like home. (This is easier once he moves out of ICU.) Bring in a few of his favorite things such as a pillow, blanket, posters and photos of family, friends or pets. Label photos with names, dates and events for the health team. Set up a way for him to respond to you, but stay away from hand squeezing. A hand squeeze can cause a reflex which is often thought to be a willful movement when itâ&#x20AC;&#x2122;s not. Tell him briefly and simply where he is, the date, what has happened and who you are. Know your loved one may hear you even if he looks like he is asleep. Avoid talking about something you don't want him to hear.

Ask simple questions like, “Show me...” or “Where is…?” instead of, “What do you think about?” Responses may be slow and inconsistent.

Give him plenty of time to respond.

Notice things you do that may increase or decrease agitation. Let visitors and health team members know so they can manage agitation in the same way.

When your loved one is calm, encourage him to try simple self-care tasks such as combing his hair or washing his face. Keep on taking good care of yourself. Accept the fact that you canâ&#x20AC;&#x2122;t force your loved one to recover faster by doing (or not doing) certain things. Your being there helps a lot, but recovery has its own time frame. Let family or friends take your place for a while so that you can rest and relax. Treat yourself to a favorite activity.

Confusion The confused stage is common to most brain injuries and may be part of emerging. This stage is hard for both you and your loved one. He may bounce back and forth between being angry, confused, inappropriate, funny, sad and agitated. As your loved one continues to improve he becomes more alert and can respond to simple questions. It is easier for him to carry out simple, well known tasks than to learn new things. Your loved oneâ&#x20AC;&#x2122;s short attention span will limit the amount of time he can spend doing any one thing. Noises or movement in the room can distract him. Tests may be done to see if he can swallow safely because inhaling food and liquid into the lungs (aspiration) is a concern during this time. Once his swallowing gets better, he will be given food. At first, he may only have pureed food and thick liquids. Later on, he will be allowed to eat harder foods and drink thinner liquids. His bowel and bladder control will also get better during this time. At first, the health team may toilet him and put him on a regular schedule to help him regain control of his bowels and bladder.

Post Traumatic Amnesia is part of this stage because the patient remembers some things and not others. This is why he often can’t recall day to day facts such as where he is or whether or not he has eaten. He may often try to get out of bed or walk without knowing that it isn’t safe to do so. Soft wrist or vest restraints may be needed to prevent further injury. He may not know what the date is or how much time has passed. He may not know family members. Even when he does know people who are important to him, he may not recall how often they visit. Many times each day, the health team will ask questions such as: “What day is it?”, “Where are you?” and “Who am I?”, or other questions about his orientation. If he is able to speak, his speech may sound confused. He may create false or funny stories that help him make sense of his confused state. The health team calls this confabulation. Your loved one may also say or do the same things over and over. (You may hear the term perseverate to describe this.) One way to handle this is to: remind him that he is stuck, and tell him to erase these thoughts from his mind bring up some other thought or activity to help him move on (sometimes called redirection) As he improves, his thoughts and speech will become more normal, and he will begin relearning old skills. It may be hard for your loved one to learn new things after a brain injury. This type of memory problem can last for the rest of his life. It may be hard for him to pay attention, understand, speak or store and recall information he is given. These problems can occur alone or along with other thinking problems, and they will be a focus of treatment later on.

The Rancho Los Amigos Scale of Cognitive Functioning* is used to track recovery of thinking skills. Just like in Disorders of Consciousness, changes can be small and slow, and people often move back and forth between one or two levels while they are recovering. In the scale below, the term stimulation means providing the person with either sound, sights, touch or movement.

Rancho Los Amigos Levels of Cognitive Functioning Level 1: N o Response: The person appears asleep and does not respond to stimulation. Level 2: G eneralized Response: The person responds in the same manner to any stimulation and responses are slow and inconsistent. Level 3: L ocalized Response: The person responds directly to a particular type of stimulation, and may slowly and inconsistently respond to simple directions. Level 4: C onfused and Agitated: The person is more alert but seems upset, excited and not able to understand what is happening around him. Confusion can cause him to hit or scream or thrash about and he can't think clearly. Level 5: C onfused and Inappropriate: The person can follow simple directions but is unable to think clearly or learn new information. He may "make things up" (confabulation) to fill in the gaps for his poor memory. Level 6: C onfused and Appropriate: The person may begin to carry out easy, familiar self-care tasks with assistance. Memory and attention are poor and make it difficult to learn new tasks. He may be able to answer simple questions correctly if assisted with details. Level 7: A utomatic and Appropriate: The person begins to have some general understanding of his condition but needs supervision for safety. Judgement is poor and he can have difficulty planning and carrying out activities. Levels 8, Purposeful and Appropriate : The person realizes that he has problems 9 and 10: with memory and thinking and begins to use assistive aids or tricks to work around challenges. He often needs a little extra time and help from others when problems arise. He may become depressed and easily frustrated. His problems with thinking may not be noticed by people who did not know him before the injury.

* Adapted from the original scale by Chris Hagen, Ph.D., Danese Malkmus, M.A., Patricia Durham, M.A. Communication Disorders Service, Rancho Los Amigos Hospital, 1972.

Family Tips Limit the number of visitors to 2 at a time, and keep visits short so he doesn’t get too much stimulation. Be aware of actions or noises around him which can add to confusion. You may want to turn off the music or TV if he needs to concentrate. Close the door if he is bothered by an outside noise. Keep daily routines the same if you can. Try to visit at the same time each day, and start your visits with the same questions and activities. When you can, warn him of a change in routine before it happens. Don’t forget that your loved one may still be thinking in slow motion. Present only one idea at a time. Use short, simple sentences, and give him plenty of time to respond. Continue to help him make sense of his world. Review well known events from the patient’s past. Keep a large calendar and clock in view to help him know the date and time. Help him mark off each passing day.

Hang a dry erase board in his room. Write important information on it such as the date, where he is and the names of his therapists or visitors. Keep the list neat and simple. Have your loved one take a notebook with him if he leaves the room for treatment. This gives the health team a place to record his progress. You can review these notes with him each day. Ask the same questions a lot, and give hints if wrong answers are given. Notice which hints work, and share them with the health team, family and friends. Give your loved one tasks he can do. Give a lot of encouragement and praise.

Encourage your loved one to do as much as he can for himself. People often feel that they need to do things for the patient, but your loved one will relearn faster if he tries to act on his own. Don’t scold or tease your loved one if he can’t do a task (even if you saw the task done earlier). Stay calm if he seems upset or agitated. Your loved one may not be fully aware of what he’s saying. Try not to take it personally. Be sure to place photos in his room and on his mobile phone. They will help him during this stage of confusion.

Give yourself permission to leave the hospital for a longer time. Take care of personal business that you've put off. If you have children at home, do something special with them. Now is a good time to talk with your service coordinator about money matters. He or she may ask you for other insurance information or may advise you to file for SSDI (Social Security Disability Income) for the patient. Meet with anyone else you consult about money matters such as a lawyer, an accountant, etc. Read through Understanding Your Feelings on pages 30â&#x20AC;&#x201C;36. Now is a good time to make an appointment for yourself and other family members with a counselor or clergy. Learn about your loved one's health care policy. You may need to discuss his needs with the insurance company.

Understanding Your Feelings Stress Getting used to the life changes which have happened since your loved oneâ&#x20AC;&#x2122;s injury can be very stressful. The list below gives you the signs of stress or burnout so that you can check your stress level. can't sleep always feeling tired or "wiped out" feeling hopeless and out of control constant blaming of yourself or others less interest in self-care or how you look feeling isolated and withdrawn from friends increased use of alcohol or drugs trouble concentrating behavior problems in children such as big drops in grades or acting out in school changes in children such as unusual fears or withdrawing If you notice some of these signs or see them in those close to you, it may be time to talk with a counselor. Your social worker or psychologist may talk with you or help you find someone to talk with.

Grief Feelings of grief are common among people whose lives have been affected by losses such as traumatic injuries, chronic illness or death. Grief can last from days to months, and it can involve many phases. Each person grieves in his or her own way. You may or may not go through the phases listed here. You may feel guilty and frustrated with your reactions as you adjust to changes in your life and in those you love. Your feelings are OK. You may move back and forth between the phases of grief during your loved one’s recovery and long after therapy ends. As you go through grief, talk with people you trust. Talking can bring comfort and relief. The first phase of grief is denial. Common statements during this time may sound like: “This couldn’t have happened…” “He has to wake up by next week so he can…be in the wedding, graduate, etc.”

“He’ll be just like he was before in no time.”

Next, you may become angry and frustrated. These feelings are often focused on the health team, someone related to the accident, other family members or even yourself. Anger may be expressed like this:

"It makes me angry that my son's classmates have gone on to college."

"The doctor doesn't know what he's talking about." "If the nurse was doing her job, he wouldn't be like this."

Bargaining with a Higher Power is also common during the grief process. You may have thoughts such as,

"God, if you'll just make him well, I'll never________________again."

The next stage may be the most painful, but it’s a big step toward coping with your feelings. It is depression. Besides feeling sad, helpless and hopeless, you may withdraw from those close to you and stop taking care of yourself. Loss of sleep and appetite are common. You can work through this phase by expressing your sadness and listening to the support you receive. During this stage, people sometimes say: “Why bother?”

"I had a perfect marriage, and now I'll never be happy again."

"I might as well give up my life is over."

You will start to feel better as you enter the next phase and begin to accept the changes in your life and in your loved one. Yes, your life has changed. You can’t go back in time, but you can accept the challenge of this new life. You can use this experience to motivate yourself and later to support others who may be in an earlier phase of recovery. Acceptance may sound like this: “He’s different now, and I’m getting to know the new person he’s become.” “My family and my job need me, and I need to get back into the swing of things.”

"Since this is the way my life is now, I'm going to move on with it."

Family Tips For now, try to accept the changes in your loved one. Turn your hopes into goals, and take small steps to reach each goal. Celebrate each bit of progress that your loved one makes; donâ&#x20AC;&#x2122;t focus on what he canâ&#x20AC;&#x2122;t do. Find outlets for your anger and frustration: Take your concerns about your loved one's care to your service coordinator or primary nurse. Do something relaxing such as play a sport, exercise in a gym, take a walk, listen to soothing music or take a warm bath. Do something you enjoy such as visit friends or go to a movie. Talk with others who have a loved one with a brain injury. You may be surpised to find that they share your feelings even though their situation may be very different. Your service coordinator can help you find a family support group.

Embrace expressions of your faith that bring you comfort and hope. Visit the chapel at the hospital, spend time with members of your faith community, and surround yourself with inspiration. Be willing to seek professional help through these grief phases. Avoid making major decisions without calmly talking it over with those involved and those you trust. Talk with children often about their day-to-day lives and feelings. You can learn how they cope by seeing changes in their outlook and how they act.

Getting Ready To Leave The Hospital There is a lot to be done before your loved one is discharged. This will be the case whether he goes home or to some other facility. The first step is family learning. This is very important before your loved one leaves the hospital for the first time. Try to go to all therapies with your loved one so that you can learn what he is able to do. Be sure to ask any questions you may have. It's ok if you don't remember everything you've been taught during the hospital stay. After all, you have just survived a major trauma right along with the patient. Take photos, videos, and save handouts to use later. Use them to show family members who are not there how to help.

Preparing for Care at Home Find out what your loved one can do for himself and help him with only what is needed. You will want him to gain as much independence as he can. Get instructions for: giving and refilling medicines and noticing their side effects putting on splints helping with exercises using any special equipment needed at home grooming, eating and toileting handling behavior changes such as angry outbursts or hasty actions making changes to your home, such as building a ramp or adding handrails to stairways contacting vendors for equipment repair Learn safety measures: how to prevent mishaps such as choking or falling what to do if your loved one has a seizure how to spot serious complications like infections and fluid build-up in the brain (hydrocephalus) how to keep both you and your loved one safe as you help him move from place to place (transfer), get in and out of a car, and use a wheelchair. 38

What Lies Ahead

Congratulationsâ&#x20AC;Śyouâ&#x20AC;&#x2122;ve made it through the most critical time of recovery and are on your way to the next phase of your journey. Whether your loved one will be cared for at home or in a live-in center, the road to recovery has just begun. He will still face physical, communicating, thinking and/or behavior problems when he leaves the hospital. It can be a long, hard road with many forks and turns. There will be joy during the good days and frustration on the hard days. Your loved one may be changed by the injury, and there is almost always a need for more therapy or nursing care. Your service coordinator will talk about the choices open to you. Be ready to act quickly if he or she recommends moving to a long-term care facility. You may have to choose an option within a day or two. You can find a list of things to look for and questions to ask each facility at biausa.org and carf.org. Keep asking for support from family, friends and professionals; and keep looking ahead. 39

Choosing the Best Care After Discharge The patient may still face physical, communication, thinking and/or behavior challenges when itâ&#x20AC;&#x2122;s time to leave the hospital. Talk to your hospital service coordinator about places that give the type of care needed now and as needs change. The best choice will depend on patient and family needs as well as finances. Insurance covers different types of care, but must be approved first. Service coordinators can help by asking your insurance carrier to approve the care recommended by the doctor.

Types of care A Long Term Acute Care Facility is a hospital for patients with serious medical problems that require specialized care for an extended period of time. Patients with disorders of consciousness often go here until they can actively participate in a rehabilitation program. An acute rehabilitation (therapy) facility can be in a hospital or separate facility. Patients stay overnight for therapy and medical care from nurses and doctors each day, and need to be strong enough for 3 hours of therapy, 5 days a week. A skilled nursing facility or nursing home both provide therapy and nursing services, but for less time than an acute rehabilitation facility. Therapy is 1-2 hours a day for 3-5 days each week. These services are often covered by insurance for a short time. But if you need care for a long time, coverage by private insurance or government programs may be limited. 40

Home health care can be given in the home for those whose improvements are slow and who are not able to go to a treatment facility. Speech, occupational and physical therapies, as well as nursing and social work, are provided 1-3 times per week. A nursing assistant can offer personal support with activities like bathing, dressing and staying safe. Outpatient facilities provide therapies at a clinic if you are able to leave your home. They have special tools and machines that therapists can use to help you regain your strength and abilities. These services usually happen 2-3 times a week. Living at home or in the home of a relative is often chosen for financial reasons or because there is someone who can take care of the personâ&#x20AC;&#x2122;s needs. It is helpful to have several family members, neighbors and friends pitch in to create a strong circle of support. Respite care can bring much needed relief to families caring for loved ones at home. Respite is usually provided by helpers in the home but sometimes in a nursing facility for short periods to give the caregiver a break.

Tips if returning home after discharge Tell children ahead of time what to expect. Let them interact freely but quietly. If you think a child's actions may be too much for your loved one, ask family and friends to take the children out for a while. Give him time to adjust to being home. Limit the number of visitors at first. Have a back up support person so you can take a break. Avoid busy public places during the first few outings. Your loved one may be slow to adjust to changes and could be easily over stimulated. Be sure to ask home health care staff to explain any instructions that seem confusing to you. Share your daily routine with caregivers so they can help you make adjustments for ease and safety. Teach caregivers what works best for your loved one and for your household.

A Word About Seizures Some people have seizures after a brain injury. A seizure happens when faulty electrical signals from the brain change the way a body functions. Knowing what to do in advance can make you feel more secure and help your loved ones keep you safe. Some seizures are mild and may cause a person to stare into space and have a blank expression for a short time. Others may cause muscles on one side of the body to twitch or jerk. A “generalized” seizure is stronger and makes muscles in the whole body become stiff and have a repeated jerking movement. It is normal for a person to be confused and tired for a while after this type of seizure.

Family tips: Try to turn the person having a seizure on his side, and put something soft under his head. Reassure him that everything is ok. Don’t put anything in his mouth—he will not swallow his tongue. Call 911 if the seizure lasts longer than 5 minutes, two seizures occur back-to-back, or if the person has trouble breathing. Sometimes seizures can be avoided by taking medicine at the same time each day, getting lots of rest, and avoiding alcohol.

A Letter To Family Allison Brown was an 18 year old college freshman when she was in a car wreck that left her with a severe brain injury. She was in a coma for 24 days and in intensive care for a month. Her injury left her with both physical and cognitive problems. Allison’s recovery is impressive. She returned to college and graduated with a degree in Occupational Therapy. Her strong will, the constant support of her family and the dedication of the health team all helped Allison’s recovery. She shares some of her experiences in a letter to you. Her hope is that this letter helps you during your loved one’s recovery.

Dear Family Member, Since I have been in the same position that your loved one is, let me tell you what my family did which was helpful for me. If I had to pick one thing that was of greatest importance to my recovery, it would be “hope.” It was very important that we all had a positive frame of mind. My family always thought and talked in positive terms. I personally think it is helpful to avoid negative talk around the patient. Negative talk can upset the patient’s entire pathway to recovery. Try setting goals for your family, goals that will help the patient strive for recovery. Ask yourself, “What can we do as a family to boost progress?” Make the patient’s goals your goals. I felt that my walking was as much my Mom’s goal as my own. It is easier to work toward a goal when you are not alone—when you can share your thrill in reaching it. It was comforting that my family treated me as “normal” as possible. One way that my family did this was by decorating my hospital room to create a feeling like home. My hospital room looked like a dorm room with posters, my favorite stuffed animals and pictures. Whatever is important to the patient can be used to make the hospital room personal and special.

Early in recovery, doctors may tell the family or patient about limitations. It is important to know, however, that it is very hard to predict the extent of recovery in these early stages. I felt that if we had decided to give in to these “expected” limitations, I would not have progressed as far as I have. Doctors tend to avoid talking directly to the patient. They may direct questions about the patient to the family, even in the presence of the patient. As you feel that the patient is ready, you may need to direct the flow of questions over to her. Letting the patient answer questions about how she feels, what happened in the accident and explaining her injuries can help to make her feel more responsible and normal. As a family, you may have to figure out the amount of independent action the patient can handle. Sometimes you need to push the patient to try new activities such as making her own lunch or feeding herself. But you need to be careful not to let the patient push herself to exhaustion. My family found that there was a very fine line between pushing too hard and not pushing hard enough. If I was pushed too hard from any direction, I would develop a feeling of panic which is probably fairly common in head trauma patients. When my family could see this panic, I was comforted by their support, understanding and reassurance. Another way my family was helpful to me was by letting me grieve—but not to the point of burying myself in the grief. I had to work through my grief for what I had lost so that I could strive forward to recovery. I grieved over the time and the motor skills I had lost. My family let me know that it was all right to grieve for a while but not to let it get me down and “get in the way” of my recovery.

My family allowed and encouraged me to do as much on my own as they felt that it was safe for me to try. I was never told, nor did I see in the faces of my family, “I told you so” if I failed to successfully complete an activity. One of my family’s favorite phrases following unsuccessful attempts was, “It just takes time.” I heard that phrase so many times, and I appreciated the sentiment, but I began to hate to hear it. If you find yourself using the same phrase over and over, you may want to change what you say and add new positive statements. It was easy to fall into the trap of over-protection. To protect me was a natural instinct. But this protection could have hindered me in the long run. If I was trying some activity such as dressing myself and was obviously struggling, my family had to “sit on their hands” to keep from helping me. If I had not had the chance to try and struggle, I could have easily become too dependent on the help of others. It was useful for my family to have a thorough understanding of the goals set for me by my therapists. My mom took the lead to find many of the services and materials needed for my therapy. Don’t be afraid to take on these tasks. Mom made me a pillow covered with material with buttons and matching buttonholes to exercise my fingers. This was great therapy for my motor skills, but I hated that pillow. Since I hated it so much, Mom figured out another way to give me the same therapy. Be creative in your search for different approaches to reach therapeutic goals.

Each member of my family developed their own place in my recovery. They each picked a certain part to help out with. My mom was "Doctor Organization." She helped me get my days and weeks organized in respect to my therapies. My dad played the part of "Mr. Computer Rehab Genius." He would gain an understanding of my rehab computer programs and make sure that I understood how to work them. He also played "Mr. P.T." in helping with my physical therapy. My sister was my "Confidant." She was always there to encourage me as well as to take me somewhere and help me get done whatever I couldn't do alone. Just knowing that my family was trying to understand my emotional, physical and medical needs was such a positive source of support. I knew that I was not alone in my goal for finding normality again. With the support of my family I was able to push harder for success.

Best Wishes,

Resources BrainLine brainline.org The Journey Home-

the CEMM Traumatic Brain Injury Web Site traumaticbraininjuryatoz.org

Brain Injury Association of America biausa.org 800-444-6443 Brain Injury Recovery Network tbirecovery.org 1-877-810-2100 Defense & Veterans Brain Injury Center dvbic.org 1-800-870-9244 CaringBridge and PostHope (connects family and friends throughout a health crisis) caringbridge.org posthope.org Commission for the Accreditation

of Rehabilitation Facilities carf.org 1-888-281-6531

About the authors Mary M. Castiglione is a physical therapist who has worked with people disabled by brain injuries, and their families, since 1985. After leading physical therapy programs for 10 years at 2 major neurological rehabilitation facilities in Atlanta, Georgia, she became one of the pioneers in vestibular rehabilitation in the Southeast. Her publications include contributions to the Journal of Urological Nursing and to Motor Control and Motor Learning in Rehabilitation, a textbook for students in the health care field. She is also coauthor of Stroke: Early Stages of Recovery Cynthia C Johnson, MA , CBIST is the executive director of Side by Side Brain Injury Clubhouse, a psychosocial and vocational program near Atlanta, Georgia, for people with brain injuries. She has worked with this population since 1986 as a cognitive rehabilitation therapist and administrator. Having worked with people who have brain injuries and their families during both the early and long-term phases of recovery, she is committed to helping with lifelong adjustment issues to this disability. Ms. Johnson is active as a guest lecturer and consultant for groups around the United States. Publications include contributions to the professional journals, Brain Injury, Nursing and the health education book on concussion, More than a Bump on the Head. She is also coauthor of Stroke: Early Stages of Recovery Consultant: Susan Johnson, MA, CCC-SLP, CCM Director of Brain Injury Services Shepherd Center Atlanta, GA Kelly Harvie Spouse of Person with TBI Grayson, Georgia

3440 Oakcliff Road, NE, Suite 126 Atlanta, GA 30340-3006 1-800-241-4925 â&#x20AC;˘ www.p-h.com

The authors would like to express their thanks to the many professionals who helped with this book. Thanks also go to the many brain injury survivors and their families who discussed ideas, made suggestions and allowed us a glimpse into their changed and enriched lives.