Traumatic Brain Injury (TBI) and The Family

someone experiences a traumatic brain injury (TBI), there are often
changes in the person that  present tremendous challenges to
family members. Typical
changes individuals with TBI include not
being able to control their temper, not being aware of proper
social behavior, not obeying directions, as well as restlessness
and agitation. These issues can create safety problems and
difficulty socializing with others, which disrupts family
functioning. It is crucial for family members to recognize these
changes as SYMPTOMS caused by the neurological disruption. The TBI
individual IS NOT purposely misbehaving. However, safety has
to be a concern for all family members including the TBI
individual. Here are a collection of tips on living with TBI and
keeping the family system healthy

1. Understand the

The symptoms of TBI can be varied and complex.
Patients can suffer from headaches, seizures, dizziness, memory
problems and difficulty focusing. Many times, families have the
most trouble coping with the complex emotional and psychological
changes a brain injury brings. These are some of the problems faced
by patients with TBI:

  • Chronic fatigue
    TBI patients sometimes seem to sleep all
    the time, but never feel rested. Rehabilitation takes a lot of
    energy. Just completing the routine tasks you take for granted —
    like brushing your teeth — can be exhausting for your spouse. The
    brain injury may also disrupt sleep cycles. To help, make sure your
    spouse has a strict bed time and wake time. Try to keep to
    a schedule as much as possible.
  • Anger
    Some TBI patients can seem angry all the time.
    They may be frustrated doing what used to be simple chores. They
    may also be frustrated because they can’t remember things or can’t
    stay focused on a single project. Try your best to be patient, and
    don’t overwhelm your spouse with too much to do at one
  • Too much emotion Many patients
    have trouble controlling their emotions. They may shed tears of joy
    or anger, which can be upsetting to family members. Some patients
    have trouble sorting out different stimuli, such as sound, touch
    and visual information. To help your spouse, try to filter out some
    of the stimulation. Turn off the TV or radio when
    talking with your spouse. Keep visits with family and friends low
    key, with just a couple of people at a time. Help your spouse learn
    to handle emotions by pointing out ways to express them more
  • Insensitivity
    Patients sometimes don’t respond appropriately in
    social situations and may seem insensitive or unkind. Usually, the
    patient doesn’t understand there’s anything wrong. Brain injury
    patients tend to verbalize their private thoughts without even
    realizing it, causing them to make inappropriate statements. You
    can help by speaking your feelings directly and not making your
    spouse rely on nonverbal cues.
  • Loss
    of focus – 
    Brain injuries can cause patients to lose
    some of their ability to organize their thoughts. This can be
    especially difficult for patients who used to be multitaskers. They
    often move from one thing to another, leaving unfinished projects
    around the house. Help your spouse by establishing routines. Many
    patients need to carry around a notebook or agenda to help them
    keep on track.
  • Agitation and
    Restlessness – 
    Agitation and restlessness
    displayed by individuals with TBI are the result of injury to the
    brain. This type of injury can cause them to have a
    limited attention span, poor reasoning skills and limited memory.
    This makes it difficult to stay focused on a particular event or
    topic and to figure out what to do if a problem arises. All of
    these factors contribute to agitated and restless
    behaviors. Agitation and restlessness are sometimes described
    as a stage in the recovery process following TBI. However, it is
    difficult to predict who might experience agitation and
    restlessness and if it will be a short or long-term problem. The
    length of time that individuals experience these behaviors varies.
    Often you need to “ride the storm” for a few days to see if the
    behavior will be short-lived or if interventions, such as
    medication, are needed. This means that you must be very patient
    and know ways to manage agitated and restless behavior.

2. Have a safety plan

Remember to
not take the behavioral outbursts of individuals with TBI
personally, even though they may behave in a very offensive manner
and direct their comments or actions towards you. Try to distance
yourself emotionally from this. Recognize that
it is a neurological problem and not a personal
 Remain calm and avoid reacting
emotionally to what is occurring in that moment as it is not in the
control of the TBI individual. This loss of control males a safety
plan  a MUST. Safety plans are contracts for
individuals and families with safety issues that outline a tailored
plan of action when safety is threatened. These need to
be written down with copies for everyone involved and
posted near the exist of the house and in cars. Do not rely on
memory here, and this is a good time to inlist a mental health
, if you haven’t already, to help design the
safety plan. Other tips for safety are:

  • Create a safety place. Call
    this something like the “SAFE ROOM” and make sure everyone knows
    this is the place to go when TBI disrupts safety. This may mean
    asking the individual with TBI to go to a quiet room, closing a
    door, or turning off the television. It may mean going there
    yourself until the anger has passed in the TBI
  • Stay in control of
    your behavior.
    Remember, you need to stay calm and
    speak in a low, calm voice.
  • Look
    for any obvious reason for the temper outburst
    Remove the cause if at all possible or direct the individual away
    from the stimulus.
  • Do not try to
    reason or get into an argument
     with a person
    with TBI. This can create more difficulties since many individuals
    with TBI do not have good reasoning skills. When arguing, these
    individuals are very emotional. Wait until the temper outbursts are
    over before trying to talk about what caused the outburst and how
    it might have been handled differently.
  • Learn “the aura” or signs of safety
    you get to know how your loved one reacts to situations, you may be
    able to tell when she or he is getting anxious or confused. You can
    then intervene before a temper outburst occurs by activating the
    time out and the safety plan.
  • Design a Timeout. This is a
    break in conversation that is meant to help manage high emotional states, which robs
    us of our ability to reason and handle conflict. This state is
    sometimes called flooding and may be increased
    in frequency and intensity for TBI individuals.
    Rules of timeouts need to be negotiated when not in conflict so
    everyone is on the same page. Some good rules of thumb are, setting
    a time limit, scaling the importance of the topic upon
    return, defining the need for space.
  • Use nonverbal cues, such as a time-out
    This can let them know that there is a
    problem with their behavior without having to use words, which can
    be helpful in not increasing tension.
  • Medication. This should
    be a final choice to help decrease temper outbursts. These drugs
    can be expensive and they usually result in some clouding of mental

3. Improve
communication skills

  • Speak slowly and clearly during
    difficult conversations.
    This gives the person time
    to process what you are saying if his or her cognitive (mental)
    processing is slowed by the TBI. Be very direct and brief in what
    you say.
  • Avoid repeatedly
    disagreeing or using negative language
    . It is
    important to correct inaccuracies and confusion, but not to an
    extent that an argument occurs. A good rule of thumb is to correct
    an error when it first occurs, but do not insist on your viewpoint
    if an individual with TBI claims he or she is right. It is usually
    not effective to logically reason with an individual who has a
    tendency towards agitation. At that point it is helpful to change
    the subject or make comments that neither agree nor disagree. For
    instance, he or she may tell you something is lost when you know it
    is not. If a person is not willing to accept that the item is not
    lost, just assure him or her that the lost item will turn up
    shortly. USE I-STATEMENTS! These start with an “i” instead of “you”
    and lower defensiveness and reduce irritability in listeners.
    Example: When (situation), I feel (or think, or expect) whatever,
    and I would like (solution),
  • Check
    for meaning. 
     This is when a person
    checks in with another to see if they are on the same page. For
    example, “I think we are going to have a fun night, what are you
    expecting to happen?”  Dont solve problems or deny the other’s
    meaning, just listen and support. It is good to find common ground
    and this can be done by affirming your understanding
    of what something means to another.For instance, “I hear
    you are worried about being around others, is that right?” And then
    affirm, “I can appreciate your concern.”
  • Redirect the attention of a person with
    . When a person with TBI shows signs of becoming
    upset, you can change topics or activities to something less
    disturbing or confusing. Humor can also be a helpful distraction.
    Laughter shows that you are not too rigid or formal. It is
    important, however, that a person with TBI not feel that others are
    laughing at him or her. You can even call a time out on a topic,
    tabling it for later.
  • Formally
    end your contact
     with a person with TBI.
    Although we do not commonly do this in our everyday contacts, it is
    an important step. Often individuals with TBI are not aware of cues
    that suggest that you intend to leave or end a conversation.
    Therefore, it is important to state your intentions, “I have to
    leave now (name).” Or if you are not leaving but want to change the
    topic, singla with words that you wish to do this. For example, “I
    want to switch topics, are we good here?”
  • Avoid embarrassing a
     with TBI by commenting on his or her
    behavior in front of others. An individual with TBI is still an
    adult and wants to be treated like an adult. You need to talk about
    the improper behavior, but do this one-to-one and in a sensitive
  • Reduce
    It does not help to correct or criticize
    the behavior without giving the person some ideas of a better way
    to respond. If you have a complaint, just make the complaint, don’t
    personalize it. For instance, say “I dont like _____” Instead of
    “You shouldn’t______”
  • Reduce
    This is hard in the most advantaged
    circumstances but learning it will serve you well. Defensive
    language includes blaming others, whining, guilting, yes-butting,
    and denying personal responsibility. Listen for these in your own
    language and make the necessary corrections.
  • Create a positive lens instead of
    a negative lens for
    the relationship. 
    Note positive exceptions
    to the current trouble, Use positive language and self
    talk about the interaction, externalize the situation (not about
    you), avoid globalizing (never and always , and stay in
    the present (no laundry lists of grievances).

5. Increase
Self Care

  • Take
    Try to schedule outings in the morning,
    when your spouse is rested. If you’re planning on having family or
    friends over in the evening, schedule an afternoon rest
  • Treat each other
    You may have gotten used to taking care of
    everything while your spouse was in the hospital. Now is the time
    to give back some of the duties your spouse took care of before the
    injury. This will ease your burden and make him or her feel
  • Try new
     It will take time, but a brain injured
    patient needs to learn tasks. Although it may be frustrating at
    first, let your spouse take the time to learn routine chores and
    help around the house. You will want to pay particular attention to
    safety as new tasks are added.
  • Remember Good Moments. Try hard
    to stop thinking about how things used to be, and try to focus on
    what you have together now. In the midst of being a caregiver, it
    can be difficult to remember your role as spouse. Try to take time
    to nurture your relationship.
  • Find a
    TBI survivors group.
     A TBI survivors group will put
    you in touch with other families facing the same difficult times as
    you. Attending as a couple will help you get involved with new
    friends and cope with the long-term challenges of living with a
    brain injury.
  • Have a self care plan for every
    family member involved in care of TBI individual. I have designed
    an evaluation to help track self care needs, click here.

Online Support groups:
Traumatic Brain Injury & Post Concussion
General Mental Health and Emotional Support:
Caregivers Support:
  Resources for this article:

 Article by Tom Novack, PhD Issue
4, May, 2002,
Guide to Traumatic Brain Injury
By: The National Center for the
Dissemination of Disability Research (NCDDR) and the Research and
Training Center (RTC) on Community Integration of Individuals with
Traumatic Brain Injury. 2002
This Guide includes resources produced by NIDRR Grantees, including
the TBI Model System Centers.
Based Cognitive Stimulation Program
By: Tom Novack
& Jacqueline Blankenship 2002, UAB Model TBI Care System,
Birmingham, AL
Booklet of activities to use with individuals following their brain
injury designed to assist in the recovery of thinking skills.
Activities grouped by levels of difficulty and different thinking
skills. 56 pp. $3. Living with Brain Injury: A Guide
for Families
, 2002 By: Richard C. Senelick, MD and
Cathy E Ryan, MA This book will help families, persons with brain
injury or professionals. Topics include: Causes and treatments;
physical, cognitive and behavioral symptoms; & questions
family members commonly ask. 145 pp. To order call 800-321-7037
$10.95 Management of Behavioral Problems during Acute
Rehabiliation of Individuals with TBI
By Tom Novack,
PhD 2002, UAB Model TBI Care System, Birmingham, AL A
paper for rehabilitation staff who work with individuals with TBI
that suggest ways to manage their own behavior in relation to
behavioral problems of individuals with TBI.
Understanding Brain Injury: Guide for the
By: Mayo Clinic Model TBI Center, Rochester,
MN A booklet to help
families adjust including topics such as: the structure and
function of the human brain; causes of brain injury; the recovery
process and behavior and communication changes after TBI. 34 pp.



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