Building Family Ties
Set time aside each week for your family to spend some fun time together, and move the family focus away from TBI. Try these ideas with your family:
- Have a family meeting. Explain that you plan to hold a family time every week, and ask for ideas for when and what to do (if family members are old enough to participate). Family members could take turns choosing activities.
- Turn off the video, cell phone, e-mail, etc. during family time. Your goal is to interact with and enjoy each other.
- Try activities that everyone in the family can enjoy. This might include doing things like playing board games, taking a walk or run, or baking cookies. Find activities where everyone in the family can play a role.
- In addition to family time, schedule some individual time with each family member. Children need to have time alone with their parent(s). This helps them feel heard and appreciated. Plan an activity with each child—a shopping trip, movies, story time—and schedule it in on a regular basis.
- To build closer family ties, encourage the children to play simple games with their injured parent. Such games may also help the injured parent practice skills to help in recovery.
- Think about your family rituals and keep them on the schedule. If you plan elaborate holiday decorations, you may need to cut back this year but you can still celebrate more simply.
Communicating with Your Child
Having a parent with TBI can be frightening for a child who looks to his or her parent to provide strength and safety.
The parent with TBI may no longer act the same as he or she did before the injury. Your family member/parent with TBI may be angry, depressed, or uncertain.
As a result, the special parent-child bond that existed previously has changed.
Children may be confused and upset about what is going on. This could be due to worry about a parent’s condition or concerns about changes in their parents’ relationship. It could also be due to financial strains, or simply adjusting to the new “normal.”
It is important to recognize that your children are grieving, just as you are. They may withdraw from social activities with peers, have mood swings, become withdrawn or disruptive, do poorly in school, and show other behavioral problems.
Children also need time and space to be kids. Communicate with your child that he or she is not to blame for the TBI.
Some children may need to take on some caregiving tasks for the parent or for younger children in the family. Children who care for parents or other relatives experience considerable conflict over the reversal of roles between parent and child.
Make sure any tasks that your child takes on—household chores, for example—are suitable for his or her age. Strive as much as possible to find other adults to help you, rather than relying on your children to play a major caregiving role.
You can help your children by explaining TBI in a way that they can understand. Ask a health care provider to talk with your children.
Build new family routines, and keep an eye out for signs that your child is not coping well.
If your child appears to be depressed for a long time or he or she begins taking on risky behaviors, seek professional help.
How Can I Tell My Child about TBI?
It is difficult to explain TBI to a child. Yet it is vital to tell your child what is going on. Some adults try to protect children from the truth because they think they are too young to understand. Children of almost any age are aware that something is wrong and they want to know what is happening.
Communicate in an age-appropriate way what has happened to your family member with TBI. Protecting your children by withholding information may backfire. Children have active imaginations that may create a scenario worse than reality.
How you tell your child about TBI depends on the age of the child.
What Are Specific Ways to Explain TBI to a Child?
Here are some suggestions for how to explain TBI to a child:
- The brain is similar to the command station of a space ship. If a meteorite hit the command station, the crew would not be able to control what the space ship does. If the brain is hurt, it may send out the wrong signals to the body or no signals at all. A person with TBI may have a hard time walking, talking, hearing, or seeing.
- The brain is the computer for the body. When injured, it doesn’t boot up properly, runs slower, has less memory, etc.
- A broken bone will usually heal and be as good as new. A brain injury may not heal as completely. Even though the person with the injury may look the same, he or she may still be injured. These injuries might include having a hard time paying attention or remembering what you told him or her. He or she may get tired easily and need to sleep. He or she may say or do things that seem strange or embarrassing. He or she may get angry and shout a lot.
- Many people develop anger as a direct effect of the damage to the brain. In other words, the parts of the brain that normally stop angry flare-ups and feelings have been damaged and do not do their jobs as well. The parent with TBI may be mad because he or she can’t do the things he or she used to do. His or her feelings may be hurt because others treat him or her differently than before the injury.
- A cut may take a few days to heal, a broken bone a few weeks. Getting better after a brain injury can take months or even years. Sometimes, the person will not get 100 percent better.
- Brain injury changes people. These changes can be confusing. Try to remember that the changes you see are caused by the brain injury. You can still love and care about the person.
Frequently Asked Questions
What are Common Physical Effects of TBI?
- Headaches
- Sleep Changes
- Fatigue/Loss of Stamina
- Dizziness
- Balance Problems (Tendency to Fall)
- Sensory Changes
More information -
Managing Physical Effects of TBI
What Physical Effects May Be Less Common?
- Spasticity
- Hemiparesis, Hemiplegia
- Bladder/Bowel Changes
- Changes in Swallowing and Appetite; Weight Loss or Gain
- Visual Spatial Problems
- Apraxia
- Seizures
- Heterotrophic Ossification
More information –
Managing Physical Effects of TBI
What are Common Cognitive Effects?
- Confusion
- Slowed Speed of Processing
- Attention Problems
- Difficulties with Memory
- Planning and Organization Problems
- Difficulty with Decision Making and Problem Solving
- Confabulation
More information –
Managing Cognitive Effects of TBI
What are Common Communication Effects?
- Does Not Speak Clearly
- Problems Starting a Conversation
- Word Finding Problems
- Reading Comprehension
More information –
Managing Cognitive Effects of TBI
What Communication Effects Are Less Common?
- Dysarthria
- Interrupting or Having a Hard Time Taking Turns in Conversation
- Topic Selection
- Writing
- Non-Verbal Communication Issues
More information – Managing Cognitive Effects of TBI
What Are Common Behavioral Effects?
- Frustration, Increased Anger/Aggressiveness
- Impulsivity or Difficulties in Self-Control
- Poor Judgment
- Reduced or Lack of Initiation
- Repetitive Behaviors (Perseveration)
- Less Effective Social Skills
- Changes in Sexual Behaviors
- Lack of Self-Awareness
More information –
Managing Cognitive Effects of TBI
What Are Common Emotional Effects?
- Depression
- Increased Anxiety
- Mood Swings (Emotional Lability)
- Changes in Self-Esteem
More information –
Managing Cognitive Effects of TBI
Will our lives ever get back to normal?
The course of recovery after TBI depends on several factors. Your lives may return to “normal” or you may need to learn to adjust to a “new normal.” It can take time to adapt to the life changes after TBI. Although many problems will improve in time, some symptoms may persist throughout the person’s lifetime. Research has shown that many people who experience TBI do lead a life they find satisfying, even if it is not exactly the life they had prior to the injury.
How Should I Organize Medical and Military Records?
A notebook that includes sections for:
- Personal information – This includes important facts, such as your service member/veteran’s Social Security number, military service record, emergency contacts, and allergic reaction to medications.
- Military service papers – Keep copies of military service records, etc.
- Medication log – Write down all the drugs taken, dosages, dates, side effects, and problems.
- Medical reports, tests, scans – Ask for copies of all reports, scans, and tests, and file them in this section of the notebook. Put CT and MRI scans of the brain on a CD. Keep these to share with future providers.
- Notes and questions – Include a three-hole punched notepad in your notebook. You can use it to take notes and then insert the sheets in the right sections.
- Resources and information – This is the place to keep all the forms and information you have received at appointments.
- Calendar of appointments – Use a calendar with enough room to write all of your appointments.
You may want to keep another notebook or file with the records needed to apply for medical and family benefits or Medical Evaluation Board/Physical Evaluation Board (MEB/PEB). (See Module 4 for more information about the MEB/PEB.) This file will help when you apply for financial aid, a job, or more medical care. When you are not using this file, keep it in a locked place to keep it safe.
This file could include:
- Social Security card, military records, and insurance cards
- Power of Attorney
- driver’s license, birth certificate, marriage certificate
- school and work records
- tax returns and assets.
How Can I Tell My Child about TBI?
Communicate in an age-appropriate way what has happened to your family member with TBI. Protecting your children by withholding information may backfire. Children have active imaginations that may create a scenario worse than reality.
More information - Helping Your Children Cope
What Can I Do If Caregiving is Just Too Much?
Have a back-up plan for finding temporary or more permanent residential care for your family member with TBI. Discuss quality of life issues with your family and health care professionals. Your choices may include:
Give others permission to care for your loved one. Seek assisted living facilities and board and care homes—for those who have difficulty living alone but do not need daily nursing care. Consider nursing homes, also called skilled nursing facilities—for individuals who need 24-hour nursing care and help with daily activities. Skilled nursing care can also be provided at home by nurses you hire. Check with your case manager(s), VA liaison, and/or military liaison for residential care benefits that may be available to your family member with TBI.
What Can I Expect When My Family Member Comes Home?
Moving back home is an exciting step in the recovery process! Although the transition to home is certainly positive, it is important to be aware that it may also be stressful at times. Some families report that during the first few days or weeks at home, their family member regress and need more time to adapt to a new environment, even if it’s a familiar one. It is helpful to add structure and consistency right away at home by scheduling activities and rest breaks much like the schedule observed in rehabilitation. Recreational and occupational therapists are your best allies in this effort and they will work closely with you to practice community re-entry.
More information - Preparing for the Transition Home & Transitioning Home
What is the Family and Medical Leave Act?
The Family and Medical Leave Act (FMLA) provides service members/ veterans and their spouses who are employed by companies with 50 or more employees with up to 26 weeks of unpaid leave per year to care for a seriously-injured service member without losing their jobs or health care insurance.
For the most current information: www.dol.gov.
For More Information – LINK to Scene 14 - FMLA
What Temporary Housing is Available for Caregivers?
If your service member/veteran is being treated at a military treatment facility (MTF) or a VA Polytrauma Center, you may be able to stay nearby for free or at a low cost.
Housing for family members includes:
- Malone House at Walter Reed
- Navy Lodges
- Fisher Houses at the VA Polytrauma Centers.
Nonprofit organizations may also make some apartments near treatment centers available to families at little or no cost. Check with your POC to find out what temporary housing is available where your family member is being treated.
More information -
Addressing Everyday Issues
Glossary
Absence Seizures – A non-convulsive generalized seizure when a person may appear to be staring into space with or without jerking or twitching movements of the eye muscles. These seizures may last for seconds, or even tens of seconds, with full recovery of consciousness and no confusion. People experiencing absence seizures sometimes move from one location to another without any purpose.
Abstract Thinking – Being able to apply abstract concepts to new situations and surroundings.
Acceleration – To increase speed and/or change velocity.
Alopecia – A condition of a loss of hair or baldness.
Amnesia – A loss of memory. Amnesia can be caused by brain injury, shock, fatigue, repression, illness and sometimes anesthesia.
Angiogram – A procedure in which a dye is injected through a thin tube into a blood vessel. Special x-ray pictures are taken, allowing your health care provider to view the blood vessels of the brain, heart or other part of the body. Also called an arteriogram for arteries or venogram for veins.
Anorexia – A loss of appetite, especially when prolonged over time.
Anosmia – The decrease or loss of the sense of smell.
Anoxia – Absence of oxygen supply to an organ.
Anoxic Brain Injury – Injury to the brain due to severe lack of oxygen. This usually happens when blood is unable to flow to the brain due to certain injuries,bleeding, or cardiac arrest.
Apraxia – The loss or impairment of the ability to perform complex coordinated movements despite having the desire and the physical ability to perform the movements.
Arthralgia – Joint pain or stiffness in a joint.
Ataxia – The inability to coordinate the movement of muscles. Ataxia may affect the fingers, hands, arms, legs, body, speech, or eye movements.
Axons – Also known as nerve fibers, an axon is a long, slender projection of a nerve cell, or neuron, that conducts electrical impulses away from the neuron's cell body or soma. Axons are the primary transmission lines of the nervous system.
Basal Ganglia – The deep brain structures that help start and control voluntary movements and postures.
Bipolar Disorder – Also known as manic-depressive illness, bipolar disorder is a brain disorder that causes unusual shifts in a person’s mood, energy, and ability to function.
Blast Injuries – Injuries that result from the complex pressure wave generated by an explosion. The explosion causes an instantaneous rise in pressure over atmospheric pressure that creates a blast over pressurization wave. Injuries to organs surrounded by fluid, such as the brain and air filled organs such as the ear, lung and gastrointestinal tract are common.
Brain – The main organ of the central nervous system (CNS). It is divided into the cerebrum, brainstem, and cerebellum. The brain regulates virtually all human activity.
Brain Stem – The lower extension of the brain where it connects to the spinal cord. Neurological functions located in the brainstem include those necessary for survival (breathing, heart rate) and for arousal (being awake and alert).
Cerebellum – The portion of the brain (located in the back) that helps coordinate movement.
Cerebral Hypoxia – The inadequate oxygen supply to brain tissue. Mild or moderate cerebral hypoxia is sometimes known as diffuse cerebral hypoxia. It can cause confusion and fainting, but its effects are usually reversible.
Cerebral Spinal Fluid – A colorless fluid that is found around and inside the brain and spinal cord, offering some protection and cushioning the brain.
Cerebrum – The largest part of the brain. It is divided into two hemispheres, or halves. It controls motor, sensory, and higher mental functions, such as thought, reason, emotion, and memory.
Chronic Subdural Hematoma – An "old" collection of blood and blood breakdown products between the surface of the brain and its outermost covering (the dura).
Closed Head Injury – Injury to structures within the skull or the brain that do not result in an opening in the, such as a direct blow to the head or a blast. Injuries may range from a mild concussion to potentially fatal.
Coma – A state of unconsciousness from which the person is not aware of the environment nor able to perform voluntary actions.
Computerized Axial Tomography, or CT or CAT Scan – A painless procedure in which x-rays are passed through the affected area at different angles, detected by a scanner, and analyzed by a computer. CT scan images show bones and blood collections more clearly than conventional x-rays. The computer can combine individual images to produce a three-dimensional view.
Concussion – A blow, jarring, shaking or other non-penetrating injury to the brain which causes a temporary decrease in normal brain activity.
Consciousness – The state of awareness of the self and the environment.
Contusion – A bruise. In terms of brain injury, a contusion refers to bruising of the brain tissues.
Coup-Contrecoup – An injury to the brain that occurs when an impact or violent motion brings the head to a sudden stop, causing injury to the impact site and the opposite side of the brain. This is also known as an acceleration / deceleration injury.
Cranium – Skull.
Deceleration – To reduce speed or go more slowly.
Diffuse – Widely spread.
Diffuse Axonal Injury, or DAI – Widespread injury of large nerve fibers (axons covered with myelin).
Diffuse Brain Injury – Injury to cells in many areas of the brain rather than in one specific location.
Diplopia – Seeing two images of a single object; double vision.
Dura Mater – The outermost of three membranes protecting the brain and spinal cord. It is tough and leather like.
Dysarthria – Difficulty in forming words or speaking them because of weakness of the muscles used in speaking. Tongue movements are usually labored and the rate of speaking may be very slow. Voice quality may be abnormal, usually excessively nasal; volume may be weak; drooling may occur.
Dyskinesia – Involuntary movements most often seen in the arms or legs.
Electroencephalograph, or EEG – A test that measures electrical activity of the brain that is recorded from electrodes placed on the scalp.
Epidural Hematoma – Bleeding into the area between the skull and the dura mater.
Euphoria – An exaggerated or abnormal sense of well-being not based on reality.
Executive Functions – The ability to formulate and carry out plans effectively. These functions are essential for independent, creative and socially constructive behavior.
Expressive Aphasia – also known as Broca’s aphasia. A difficulty in expressing oneself in speech and writing. Characterized by knowing what one wants to say but being unable to find the words to say what is being thought. There is lack of spontaneous speech, words are often labored over and sentences are short and incomplete.
Focal Brain Injury – Damage confined to a small area of the brain. The focal damage is most often at the point where the head hits an object or where an object, such as a bullet, enters the brain.
Frontal Lobe – The front part of the brain; involved in planning, organizing, problem solving, selective attention, personality and a variety of "higher cognitive functions."
Generalized Tonic-Clonic Seizures – A seizure involving the entire body. It is also called a grand mal seizure. Such seizures usually involve muscle rigidity, violent muscle contractions, and loss of consciousness.
Glasgow Coma Scale – A scale used for measuring level of consciousness. Scoring is determined by three factors: eye opening ability, verbal responsiveness, and motor responsiveness. The scores range from lowest level of responsiveness a 3 to highest level of responsiveness a 15.
Hematoma – A collection of blood caused by the rupture or tearing of blood vessels.
Herniation/Herniated –Compression of brain tissue caused by high pressure inside the skull that can lead to death if not aggressively treated.
Hypertension – The medical term for high blood pressure.
Hypotension – The medical term for low blood pressure.
Hypoxia – Decreased oxygen levels in an organ, such as the brain.
Intracranial Pressure (ICP) Monitor – A monitoring device used to determine the pressure within the brain. It is used to assess potential complications resulting from increased pressure exerted on the brain.
Impaired Initiation – The diminished ability to take the first step in beginning an action.
Improvised Explosive Devices, or IEDs – An IED can be almost anything with any type of material and initiator. It is a “homemade” device that is designed to cause death or injury by using explosives alone or in combination with toxic chemicals, biological toxins, or radiological material. IEDs can be produced in varying sizes, functioning methods, containers, and delivery methods. IEDs can utilize commercial or military explosives, homemade explosives, or military ordinance and ordinance components.
Intracerebral Hematoma – Collection of blood inside the brain tissue.
Intracerebral Hemorrhage – A subtype of intracranial hemorrhage that occurs within the brain tissue itself. Intracerebral hemorrhage can be caused by brain trauma, or it can occur spontaneously in hemorrhagic stroke.
Intracranial Pressure, or ICP – The amount of pressure inside the skull resulting from the brain tissue, cerebrospinal fluid and blood volume. This pressure normally ranges from 0-10 mm Hg.
Limbic System – A group of structures deep within the brain that are associated with emotion and motivation.
Lobe – A part of the brain located in each of the two hemispheres. Each hemisphere of the cerebrum is divided into four sections known as the frontal lobe, the parietal lobe, the occipital lobe, and the temporal lobe.
Magnetic Resonance Imaging, or MRI – A test that uses a powerful magnet linked to a computer to make detailed pictures of soft tissues inside the body.
Meninges –The covering of the brain that consists of three layers: the dura mater, the arachnoid mater, and the pia mater. The primary function of the meninges and of the cerebrospinal fluid is to protect the central nervous system.
Mild Traumatic Brain Injury, or mTBI – Also referred to as a concussion, mTBI involves a disruption of brain function caused by trauma. This disruption is characterized by, but not limited to, a loss of consciousness for less than thirty minutes, and posttraumatic amnesia lasting for less than 24 hours, and a Glasgow coma Scale of 13 – 15.
Military Acute Concussion Evaluation, or MACE – A standardized mental status exam that is used to evaluate concussion in theater. This screening tool was developed to evaluate a person with a suspected concussion.
Myalgia – Pain in one or more muscles.
Neurocognitive – Of, relating to, or involving the brain and the ability to think, remember or process thoughts.
Neurons – A nerve cell that can receive and send information by way of connections with other nerve cells.
Neuropsychology – A science that combines the study of the brain’s structures and functions with psychological processes and human behaviors.
Neuroradiological Tests – Tests using computer-assisted brain scans. These tests allow providers to visualize the brain. Tests may include: CT Scan, MRI, Angiogram, EEG, SPECT Scan, PET Scan, DTI Scan.
Neurotransmitters – Chemicals found within the brain that are released from a neuron which transmit signals from neuron to neuron across gaps called synapses. These chemicals either excite or inhibit specific reactions, such as in motor neurons, the neurotransmitter causes contraction of muscles through stimulation of muscle fibers.
Nystagmus – Involuntary, usually rapid movement of the eyeballs (side to side or up and down).
Occipital Lobe – The occipital lobes are found at the back of the brain. These lobes receive signals from the eyes, process those signals, allow people to understand what they are seeing, and influence how people process colors and shapes.
Ocular – Relating to the eye.
Open Head Injury – Trauma to the brain that occurs from a skull fracture or penetrating injury.
Parietal Lobe – The part of the brain that is involved with movement, and with the processing of signals received from other areas of the brain such as vision, hearing, motor, sensory and memory.
Penetrating Head Injury – A brain injury in which an object pierces the skull and enters the brain tissue.
Perseveration – The repeated and uncontrollable use of the same words or actions regardless of the situation.
Photophobia – An intolerance to light; or a painful sensitivity to strong light.
Positron Emission Tomography, or PET Scan – a specialized imaging technique that uses an injection of a short-lived radioactive substance and special CT scans. PET scanning provides information about the body's chemistry not available through other procedures. Unlike other imaging techniques that look at structures of the brain, PET looks at the energy use of different parts of the brain.
Post Deployment Health Assessment, or PDHA – The military’s global health screening that occurs when a unit or service member returns from an overseas deployment. The purpose of this screening is to review each service member's current health, mental health or psychosocial issues commonly associated with deployments, special medications taken during the deployment, possible deployment-related occupational/environmental exposures, and to discuss deployment-related health concerns.
Post Deployment Health Reassessment, or PDHRA – A second assessment used 3-6 months following redeployment or return of service members from overseas deployment. PDHRA extends the continuum of care for deployment related heath concerns and provides education, screening, assessment and access to care.
Post Traumatic Stress Disorder, or PTSD – A condition where memories of traumatic events are re-lived after the fact.
Post-traumatic Amnesia, or PTA – The inability to remember things following a traumatic event. Memory loss caused by brain damage or severe emotional injury.
Rancho Los Amigos Scale of Cognitive Functioning – A scale used to follow the recovery of the TBI survivor and to determine when he or she is ready to begin a structured rehabilitation program.
Receptive Aphasia – Also known as Wernicke’s aphasia characterized by difficulty understanding spoken words. The aphasic individual themselves have difficulty interpreting and categorizing sounds and speak in what is referred to as a “word salad” with random words put together unintelligibly to form sentences.
Seizure – Uncontrolled electrical activity in the brain, which may produce a physical convulsion, minor physical signs, thought disturbances, or a combination of symptoms. Seizures fall into two main groups. Focal seizures, also called partial seizures, happen in just one part of the brain. Generalized seizures are a result of abnormal activity throughout the brain.
Seizures – A sudden or severe change in behavior due to excessive electrical activity in the brain. Many types of seizures cause loss of consciousness with twitching or shaking of the body. Occasionally, seizures can cause temporary abnormal sensations or visual disturbances.
Shaken Baby Syndrome – A severe form of head injury that occurs when an infant or small child is shaken forcibly enough to cause the brain to bounce against the skull, causing brain injury.
Single-photon Emission Computed Tomography, or SPECT Scan – Test that uses the injection of a weak radioactive substance into a vein, followed by pictures taken with special cameras. This test is similar to a PET scan and provides information on the energy being used by the brain.
Skull Fracture – A break, split or crack in the skull.
Subdural Hematoma – Bleeding confined to the area between the outer-most covering of the brain (dura) and the brain.
Temporal Lobes – Temporal lobes are located at about ear level, and are the main memory center of the brain, contributing to both long-term and short-term memories. The temporal lobe is also involved with understanding what is heard, and with the ability to speak. An area on the right side is involved in visual memory and helps people recognize objects and faces. An area on the left side is involved in verbal memory and helps people remember and understand language. The back area of the temporal lobes helps people interpret the emotions and reactions of others.
Thalamus – A part of the brain that is primarily responsible for relaying sensory information from other parts of the brain to the cerebral cortex.
Tinnitus – “Ringing in the ears" or another noise that seems to originate in the ears or head.
Traumatic Brain Injury, or TBI – An injury to the brain as the result of trauma to the head.
Whiplash – An injury to the neck caused when the head is violently thrown back and forth such as in a rear end car collision.
Helping Children
