A Guide for Families and Caregivers of Brain injury patients

This is from a copyrighted publication put out by ReMed, a leading brain injury treatment facility. It is the best information I have come across that condenses alot of needed info families should know, into one place. It is with respect and appreciation for ReMed that I share it with you.

A Guide for Families 


If you are reading this you have unfortunately and unwillingly been thrown into the world of brain injury 
rehabilitation. As a family member or friend you are looking for answers to your questions, practical informa- 
tion, and clues as to how to prepare for the journey ahead. 

the changes individuals experience,  
available and recommended treatment options,  
suggestions regarding getting back to life, and  
tips for moving forward are included.   

What is a Traumatic Brain Injury (TBI)?   A traumatic brain injury is an injury to the brain that comes from the outside.  Car accidents, falls, hits to the 
head (as in sports injuries), and gunshots are some of the most common causes of TBI. 

There are two primary types of TBI:  Closed Head Injuries and Penetrating (Open) Head Injuries  
Closed Head Injuries occur when the brain is damaged without the skull being opened.  For example, imagine a woman is in a car accident.  She hits the dashboard with her head.  The closed head injury occurs as the brain 
(a jello-like substance) is thrown around in its container (the skull) as a result of the hit and sudden stop.  Dam- 
age to the brain is then caused by the tearing and stretching of  tissue and cells, bruising, bleeding within the 
brain, and then from the swelling and build-up of extra fluid.  You may hear the term diffuse axonal injury to de- 
scribe this kind of all-over-the-brain damage. 

Penetrating (Open) Head Injuries occur when something goes through the skull and enters the brain itself.  Knife wounds or gunshots are examples.  Most of the damage is to the tissue right around the site of the entry 
point.  This is sometimes called a focal injury; however, additional damage to other areas may then result from 
swelling and bleeding. 

There are two other kinds of brain injuries that deserve mention: anoxic events and blast injuries. 
Anoxic and hypoxic events often occur as a result of a medical accidents and drowning.  The resulting brain injury occurs because of  the deprivation of oxygen to brain tissue.  This is referred to as hypoxia (not enough oxy- 
gen)or anoxia (no oxygen at all).   Damage in these injuries is pervasive and can be seen throughout the brain. 

Blast injuries are those injuries that many of the veterans of the Iraq and Afghanistan Wars are returning home 
with.  In a blast injury an explosion occurs which causes a rapid and intense change in air pressure.  Sometimes, 
these explosions propel fragments, vehicles, and even people causing severe injuries.  Other times, just the shift 
in pressure is enough to cause a concussion or brain contusion with lasting results.  Researchers now estimate 
that at least 20% of Iraq and Afghanistan War veterans have sustained a mild brain injury. 

Brain injuries are also described by their severity.  You may hear the terms:  mild, moderate, or severe brain injury.  
The chart below shows how doctors and therapists come to decide how severe an injury is.  


Little or no loss of consciousness
Initial Glasgow Coma Scale of 13-15
changes in "mental state" can be temporary or permanent
changes in abilities may impact areas of home, work, relationships
may be no medical evidence of injury on scans

Coma of more than 30 min. but less than 24 hrs
Initial Glasgow Coma Scale of 9-12
Some long-term problems in physical abilities, thinking or behavior
these changes impact do impact areas of home, work and relationships
visible signs on EEG, CAT and MRI scans

coma of more than one day
initial Glasgow Coma Scale of 3-8
long-term problems in physical abilities, thinking or behavior
the changes seriously impact home, work and relationships
visible signs on EEG, CAT and MRI scans

Why is an injury to the brain so concerning? 
The brain controls most of our abilities.  It holds our memories, our secrets, our 
personalities.  When it is changed, we are changed.  A TBI inevitably will alter a 
person and the way he or she gets along in the world. 

Some of the most common ways people are changed by TBI are in their physical 
abilities, their thinking or cognitive skills, and in the way they behave or show emo- 
It is important to remember that a person is a mix of all of their skills/abilities, ex- 
periences, and personality.  Any one ability 
or disability affects others.  This is true espe- 
cially in brain injury.  Areas that are 
changed impact other areas and vice versa.  
As a result, the outcome of each brain in- 
jury is unique and based on the individual, the injury itself, and the syner- 
gistic (or all-together) impact of the resulting changes. 

The table  lists some of the many ways a person may 
be changed by a brain injury.  

Physical                                                                   Cognitive                                                            Behavior & Emotion 
Balance                                           Orientation to who one is, the place and the time                                Flat or restricted emotions 
Fine and Gross Motor Skills                     Attention and Concentration                                                    Quickly-changing emotions Endurance/Fatigue                                             Memory                                                                   Apathy (caring very little about things) 
Pain                                                         Information Processing                                                                         Exaggerated personality Range of Motion/Flexibility                    Problem-solving and Judgment                                                                Anxiety 
Seizure Disorder                                          Being able to initiate or start things                                             Denial of  problems 
Spasticity (stiffness)                                    Planning and Organization                                                         depression                                                                                                        Ataxia (shakiness)                    Problem-Solving Reasoning and Understanding Abstract Things         Changes in Drives—Hunger, Sex, Temper 
Coordination                                                            Flexible Thinking                                                      Impulsivity (acts before thinking) 
Quality of Speech and Ability to Swallow     Communication Problems (Finding the words,                    Disinhibition (says/does things that are                                                                                                                                                                                                                                                       u                                                                                    understanding others)                                                    inappropriate)
Vision                                                      Slowed Thinking and Re-sponse                                                 Changes in Frustration Tolerance 
Changes in other senses (taste, smell, hearing, and 
                                                                                                                                                                      Changes in Social Skills 
                                                                                                                                                                      Decreased Self-Esteem  
Recovery:  What Happens and How to Help 
Each person’s recovery from TBI is different.  The greatest amount of spontaneous or natural healing will occur 

in the first six months after injury. Recovery after that point may continue at a slower rate and is considered sta- 
bilized at about one year.  After that, gains made are usually the result of relearning, adapting, and compensat- 

Again, each person’s recovery is specific to him or her.  However, there are some hallmarks and facts that may be 
useful in thinking about recovery in general. 

Coma--Altered or Loss of Consciousness Most brain injuries begin with a period of altered or a loss of consciousness (coma). Again, the length and depth 
of a coma is used to predict how severe the problems after the TBI will be.  Initially professionals look for eye 
opening, movement, and even speech in response to stimuli.  They measure progress on the Glasgow Coma 
Scale.  With recovery, responses move from being spontaneous and unpredictable to being more meaningful— 
like nodding, following people with their eyes, or responding to commands. 

While in a state of diminished consciousness, individuals need a great deal of care that can include both medical 
and rehabilitation efforts.  Tube feeding/hydration, position changes to avoid bed-sores, physical therapy, sen- 
sory stimulation, as well as the care of other injuries that may have occurred at the time of injury (e.g. broken 
bones, etc.) are to be expected.  While most TBI survivors move through this stage to further recover, some indi- 
viduals will remain this way for an extended period.  This is sometimes referred to as a vegetative state.  Obviously,  
individuals who are in this state require a great deal of care as they are unable to do anything for their  
themselves.  Many families in this situation are in the difficult position of finding a long-term placement for  
loved one. 

Confusion or Agitation  
As individuals emerge from coma, they often experience a period of confusion or agitation.   This is thought to 
be the result of the internal disorganization of the brain due to trauma and information processing and attention 
difficulties. They will often be confused about what happened, the date—even the 
year, where they are, and who others are.  They can be agitated--even violent.  Some- 
times they appear paranoid.  Many in this state have sleep-wake cycles that are dis- 
turbed and irregular.  Behavior can be unpredictable and even bizarre.  During this 
time, individuals cannot really learn new information.  The main goal is to mini- 
mize frustration and disorientation while natural healing occurs. 

Needless to say dealing with the challenges at this stage can be daunting for family 
members.  It is important to remember that people with brain injuries very rarely 
remember anything about this time.  Keeping them safe and promoting calm is the 
real task at hand, and family members may want to consider limiting visits and rely- 
ing on professional caregivers during this stage.    

Some suggestions include: 
Use a calm, quiet voice, • 
Speak in short sentences, • 
Limit touch, • 
Provide frequent (yet simple) information about what happened and where the person is, • 
Distract (For example, “I need to leave here now!!!”  Response: Want some juice?), 
Discuss events from the past as memory here should be better—and this may be comforting. 

Emerging Orientation 
After a period of agitation, people start to have a better sense of what has happened to them and what is occur- 
ring now.  Still, they are often unaware of the things that are changed about them as a result of the injury.  As a 
result, they may be unsafe and require a lot of supervision.  They will often have unrealistic goals and not be able 
to see why people are concerned.  Specifically, you may notice poor frustration tolerance, communication prob- 
lems, and significant difficulty with short-term memory (what happened in the recent day or days).  Social behav- 
ior can be inappropriate or disinhibited and judgment and problem-solving can be poor.    

Acknowledging Difficulties and Learning to Compensate 
As individuals continue to heal and gain experience, they also begin to learn ways to improve or get around their 
problem areas.  Most often, this process is facilitated by therapy.  This is often a time when individuals are dis- 
charged from a facility to home yet still need support to be safe, self-sufficient, and productive.  Individuals will 
begin to realize the extent of their problems yet may believe that their full recovery is still possible and imminent.  
Problems in thinking, behavior/emotion, and physical skills may persist and natural recovery/improvement 

Re-Establishing a Life  
Of all of the stages of recovery, this one is the most important and the least explored.  Once natural recovery has 
ceased and individuals are forever changed, the meaning of recovery changes significantly.  Now is the time when 
individuals and their families must look at the realties of what has happened and begin to rethink what life 
might hold for them.  Goals and dreams may need to be altered but shouldn’t be ignored.  This is a time when 
rehabilitation can make a real difference by establishing routines in the areas of home, work, and play.  It is a 
time of adjustment and –to some degree- acceptance. 

 Deficits and Strategies 
As mentioned, almost any area of functioning can be impacted by a TBI.  Individuals can have physical/medical 
changes, cognitive, and/or behavioral/emotional changes and all of these changes truly impact who the person is 
and what he or she is capable of.  Almost all people who have a TBI will tell you that they are not the same as 
they were before their injuries.  They now have different strengths and weaknesses, changed outlooks and oppor- 
tunities, and things that make everyday living a little (or a lot) harder. 

In this section, some of the most common sequelae (things resulting from) of TBI will be discussed—along with 
some of the most common compensatory strategies (things done to help individuals get around their deficits and 
improve their level of functioning/independence). 

Problem Area:  Movement 
Moves more slowly 
Weak, uncoordinated muscles with stiffness on one side or throughout most of the body 
Unsteadiness, los of balance and disequilibrium 
Has trouble picking up small objects 

Movement Strategies 
Allow more time to get places 
Talk to your doctor or physical therapist to see if a walker or cane might help. Some people 
 may even consider using a wheelchair for long distances. 
Keep things within easy reach when possible. 
Consider meeting with a physical therapist who can help with balance and movement. Also 
consider making modifications or using safety tools like a tub benches and safety rails to 
prevent falls. 

Problem Area:  Vision Blurriness 
Double Vision 
Trouble seeing things in some parts of space 

Vision Strategies Do not drive! Let a family member or friend drive until a doctor says you are safe on the road. 
Talk to your doctor—perhaps ask to see an ophthalmologist. You may need a new prescription 
for glasses. 
Beware—your old prescription for glasses may not be correct anymore. It may even make your 
vision more difficult. 

Problem Area:  Fatigue and Decreased Endurance
  Feeling tired all the time 
Sleeping more—could be at night or during the day too 
Getting tired after very short activities  

Strategies for Fatigue 
Understand that this is normal after a TBI 
Establish a consistent sleep routine and allow for extra time and rest. 
Plan your days and activities to increase little by little as strength and endurance improve. 
Schedule activities and appointments for times when your loved one is most alert. 
Consider what your loved one eats and drinks. Monitor use of caffeine and sugar which don’t 
help to promote a constant stream of energy and can lead to “down” times. Good nutri- 
tion and a regular schedule of meals and snacks can really make a difference. 
Talk to your doctor about problems with sleep.  Be specific.  There may be medications that 
can help. 
Eventually you may want to explore a fitness routine that promotes endurance and wellness.  
This is best set up by a physical therapist or other professional and should be cleared by 
your doctor.  

Problem Area:  Changes in Senses
  Cannot taste or smell food 
Complains that everything tastes the same 
Has difficulty being touched—overly sensitive to touch or pain 
Feeling over-stimulated by things such as noise, crowds, or motion 
Changes in ability to hear—cannot hear as well or is overly sensitive to noise 

Strategies for Changes in Senses 
Try adding more salt or spice to food to see if this is more satisfying. 
Have adequate smoke alarms in your home so there is no need to rely on a sense of smell. 
Take your cues from your loved one and limit touch to necessary and pleasurable experiences 
as tolerated. 
Limit exposure to noisy places and over-stimulating environments 
Talk to your doctor about problems with hearing.  A consult with an audiologist or other ex- 
pert may be warranted. 
Consider an evaluation with a PT or OT to assess sensory overload  

Problem Area:  Eating and Swallowing 
Chokes on food—has trouble chewing and swallowing without occasional difficulty 
Has trouble drinking without choking or coughing 
Wants to eat little or nothing 
Wants to eat way too much  

Strategies for Eating and Swallowing 
Talk to your doctor about problems with swallowing.  These can be dangerous and result in a 
true emergency.  A consult with a speech therapist or other expert may be warranted. 
They may be able to provide safe guidelines and training for you and your loved one. 

Strategies for Eating and Swallowing 
Talk to your doctor about a loss of appetite. It may be a sign of other issues (like depression) 
that need to be addressed. 
Explore different food choices as changes in appetite can be related to changes in taste. 
Help your loved one keep a list of what he or she has eaten.  Sometimes an increase in eating 
is related to a memory problem.  Also explore the possibility that the eating is related to 
boredom or a lack of other pleasurable activities. 

Problem Area:  Attention and Concentration 
Has trouble keeping their mind one thing—can ignore things around them 
Easily distracted by noises or other things which are not relevant to the task at hand 
Has trouble completing a routine without getting lost—like starts cleaning the bathroom when 
 supposed to be brushing teeth 
Cannot do more than one thing at a time 
Cannot focus on a concentrated task like reading or studying 

Strategies for Attention and Concentration 
Provide environments with limited distractions when possible—Declutter spaces, keep things 
in the same places, choose quiet restaurants/movie times, etc. 
Set up space that only includes things needed for the task at hand when possible—When cook- 
ing, only take out those things needed (remove other stuff) 

When giving important information or directions, turn off unnecessary distractions (TV,  
 radio) and let your loved one know that it is an important direction. Ask if they are ready 
 to receive it. 
Checklists can help with routines and can be posted if this is agreeable. 
Start critical activities (especially academic ones like reading) only when truly ready (not  
 hungry, needing the bathroom, etc.) Limit expectations about the length of time your 
 loved one can concentrate and allow for regular breaks.
Problem Area:  Memory
Forgets appointments and critical events 
Has trouble taking medication on required schedule 
Frequently misplaces important items 
Takes longer to learn new information 
Repeats same story/information over and over 

Strategies for Memory 
Use a planner/calendar system which includes important dates and things to do. Consider 
sections for other relevant information like phone numbers, addresses, and transporta- 
tion routes/directions. Encourage and assist use on a daily basis. 
Write stuff down. Doctor’s appointments—Encourage your loved one to make a note in their 
planner about the important info (or ask the doctor to do so for you). School—Take notes 
or borrow/copy others. Keep these notes where they belong—the planner, your notebook, 

Buy a medication box with labels for day/time. Fill with medications as prescribed and en- 
courage your loved one to use it. Sometimes a cue in the planner or on a beeping watch/ 
cell phone can help to remind individuals of dose times. Also, consider talking to your 
doctor about the medication schedule to explore if it can be simplified. 
Keep household items in specific places—like keys on a hook by the door, therapy papers in an 
in-bin, wallet and phone on a table in the entryway. 
Allow extra time for learning new things. Some approaches that help include repetition (you 
repeat the information often), writing things down (you can do this for-or have your loved 
one do it), using checklists and written directions, and review of the calendar/planner. 
Encourage a daily routine. Anyone who has no rhythm to their life is more likely to forget 
things. Try to establish a routine whether it includes volunteer work or therapy, meals, 
exercise, support meetings, etc.  Having a structure on which to hang memories and other 
details is very helpful. 
Consider a personal signal to use when your loved one is repeating him/herself. Be sure to 
allow them to use it on you too!  

 Problem Area:  Planning and Organization 
Has trouble getting ready for daily appointments (therapy, work, school). Often does not have 
what he/she needs 
Has trouble completing steps in the right order 
Has difficulty organizing their time and getting things done 
Has difficulty organizing their space and keeping things in order 
 Has trouble setting goals, planning the steps to reach the goal, and then completing those 

Strategies for Planning and Organization 
Again, help your loved one develop or use a planner/calendar system which includes impor- 
tant dates and things to do. Consider sections for other relevant information like phone 
numbers, addresses, and transportation routes/directions. Encourage and assist use on a 
daily basis. 
Consider checklists and routines. Depending on need, checklists can break daily routines into 
steps and serve as an actual place to check things off or can be “templates” for regularly 
occurring events such as making the grocery list 
Declutter spaces and have static places for things. Consider labeling spaces for easy retrieval of 
items. Truly consider getting rid of unnecessary items, less is really better! 
Allow extra time to prepare for activities. Consider gathering needed items and packing the 
day before. 
Identify goals and break down the steps. Record this information in the planner and review as 
appropriate. If appropriate, consider this activity at work or school.
Problem Area:  Problem-Solving 
Makes quick decisions without properly considering possible outcomes 
Gets stuck on one idea and becomes unable to consider other ideas 
Is unable to decide between choices 
Tries to solve problems in ways that don’t make sense
 Can only see things in very concrete ways 

Strategies for Problem-Solving 
Talk to your loved one about your concerns about his/her ability to solve problems and make 
decisions. Encourage them to ask for your (or a trusted friend) assistance in these matters. 
Help your loved one break down a problem into manageable pieces. Help them to generate 
possible solutions and their possible outcomes. Evaluate the choices together and choose 
one to try. Feel free to do this on paper. 
When describing options/solutions, be specific and precise in your language. Avoid abstract 
ways of describing things like analogies and metaphors 
Encourage your loved one to ask others for a “day or two” before making big decisions, allow- 
ing them time to seek assistance or think it over thoroughly. 
If your loved one is making choices/solving problems in a way that is truly dangerous (like 
giving money away recklessly or stopping medicines on their own), consider how much 
supervision they are receiving and whether or not they need oversight for some responsi- 
bilities or even a legal caretaker/guardian.
Problem Area:  Language and Communication 
Cannot find the right words to say what they want 
Talks around a subject, never really getting to the point 
Doesn’t fully understand what others are saying 
Has difficulty keeping up with a conversation, especially when there are a few participants 
 or has difficulty starting a conversation 
Speaks about overly personal or embarrassing topics
Strategies for Communication 
Allow more time to express ideas. Encourage the use of gestures or signals if it helps. 
Develop a signal to let your loved one know he/she has gotten off topic or consider a phrase 
such as “We were talking about ...” 
Check in with your loved one during a conversation to make sure he/she knows what has 
been said. Recap if possible. Encourage your loved one to ask for clarification as needed. 
Let him or her know that we all do this in one way or another. 
Try to have only one person speak at a time. 
Praise your loved one for starting conversations. Offer them some starter lines (like “So, how 
have you been?”) or consider practicing other “scripts” to help. 
Gently discuss good topics and review those that make others uncomfortable. Encourage your 
loved one to observe how others respond to them—they might even ask others if this is an 
ok subject. 
Be direct in your communication and be clear.  Don’t overburden someone with too many 
Problem Area:  Slowed Thinking  
Takes longer to answer questions or respond as expected 
Takes a long time to react to things, even physical emergencies or danger 
Takes longer to understand things he or she would have easily understood before 

Strategies for Slowed Thinking  
Allow more time –to answer questions, to read/learn new things.  Over time, some speed may 
return.  Practice does help. 
Assess the situation for safety concerns. If reaction time is poor, driving or even crossing 
streets may be dangerous. Consider alternatives—and seek advice from your doctor or a 
Review emergency procedures and post them in an obvious place. 


Problem Area:  Doing Nothing and Not Caring  
Can do nothing for long periods of time 
Fewer interests than before 
Knows what needs to be done but cannot seem to start 
Shows little to no emotions (flat) 

Strategies for Doing Nothing and Not Caring 
Accept that this is not laziness but the result of the injury 
Develop a daily routine or activity pattern to stimulate doing things and develop that habit. 
Offer a choice of 2 to 3 things to do when your loved one says he or she wants to do nothing 
Use checklists to get through an activity or daily routine. 
Reward activity and independence. 
 Allow adequate downtime and rest. This is important in recovery. 
Ask your loved one how he/she feels. Tell them it is hard to tell when they are expressionless. 
Encourage expression of feelings either in words or by looks. 

Problem Area:  Unpredictable Emotions, Poor Frustration Tolerance, and  
Exaggerated Personality   
Seems like they can be laughing one minute and then crying the next 
Emotions may seem wrong for the situation—like laughing when someone gets hurt 
Becomes angry or frustrated more easily than before—and over smaller issues 
Seems “bigger than life”—may talk more loudly, tell too many personal details to others, and/ 
or makes embarrassing or inappropriate comments
Strategies for Unpredictable Emotions, Poor Frustration Tolerance, and Exagger- 
ated Personality 
This is not their fault—it is injury-related 
Try not to pay too much attention to over-emotionality. If possible, remove the trigger and 
change the subject. 
Ignore things like yelling and using fowl language. Paying too much attention can increase 
these behaviors. 
Set some rules for communication—let your loved one know what is not acceptable within 
your family. Encourage them to express their frustration in an acceptable manner and 
show your appreciation when they do. 
 Don’t argue. 
Problems tend to occur more often with stress. Limit stress when possible. 
Consider discussing these problems with your doctor. There are times when medication or 
other interventions may truly help. 

Problem Area:  Denial of Problems  
Seems unable to recognize that things are different, that they are changed. 
Insists they can do things as well as before the injury—and wants to do things that they 
clearly cannot do. 
Blames others for their problems and complains that doctors and professionals “don’t 
know what they are talking about.” 

Strategies for Denial of Problems 
Your loved one is not ignoring their problems on purpose.  Sometimes the brain injury makes 
it impossible for them to recognize these changes. Other times denial is a way of handling 
the pain of having lost so much. 
Be honest about problems you see-- but in a kind and supportive way. 
When it is safe to do so, let your loved one make mistakes on their own. Afterwards, review 
what happened and offer solutions for the next time. 
Model admitting mistakes in a calm, easy-going, way. 
Encourage your loved one to learn about brain injury—through reading, support groups, ther- 
apy, etc. 

Problem Area:  Depression and Anxiety 
Seems sad a lot of the time and keeps to him or herself. 
Has lost interest in things he/she once enjoyed 
Changes in sleep, appetite or energy level 
Says things like, “It would have been better if I had died in the accident.” 
Is nervous and worried a lot of the time. May pace, fidget, or even complain of a racing 
heartbeat or feelings of panic. 

Strategies for Depression and Anxiety 
Understand that being sad about all that has happened is normal –it can be part of recogniz- 
ing one’s problems and moving forward. 
Show your support, acknowledge feelings and let them know that you recognize all of the 
changes as well. 
Get your loved one involved in activities he or she enjoys. A regular activity pattern is helpful 
as is exercise. 
Be honest about your concerns—offer your observations in a kind and supportive way. 
Encourage your loved one to learn about brain injury—through reading, support groups, ther- 
apy, etc. 
Talk the doctor about depression and anxiety. There are medications that might be appropri- 
ate. Also, a psychologist (with brain injury experience) may be able to help. 

Problem Area:  Impulsivity and Disinhibition 
Says or does whatever comes to mind, often without thinking first 
Does not consider the consequences of his or her actions—even dangerous things like 
walking into a street without first checking for cars 
Makes embarrassing (often sexual) comments or gestures in public 
Asks personal questions of others or offers too much personal information about him or 

Strategies for Impulsivity and Disinhibition  
Stop your loved one when he or she is acting without thinking—explain the conse- 
quences of the action. Be sure, however, to be calm and discrete. 
Consider developing a signal to use for times when he or she is acting impulsively or 
behaving in an embarrassing way. 
Remove items that may be too dangerous for your loved one’s level of impulsivity.  
Things like car keys, guns, alcohol or other dangerous items may best be removed 
from the house or his or her access. 
Limit activities to those where you expect to have the most success. Consider audi- 
ence, things to do, and your ability to stop impulsive acts or curb comments, etc.  

Going home--   it’s the day that you have been dreaming of; what you have 
all been waiting for.  Somehow, though, when the day comes it is often filled 
with anxiety and questions.  Will my loved one be safe? Can our family give 
them what they need? What will happen next? 

At one time, going home was the goal, the end, the “back to our old lives.”  
When it happens, though, it is never quite that.  It is a step on a journey that will be long. For many, getting 
“back to old lives” is just not possible.  Instead, going home may be the first step in acknowledging the changes 
resulting from the TBI and adjusting everyone’s expectations and goals. 

In the first months after discharge from hospital, families can expect their loved ones to be more tired. Gener- 
ally, there may only be 3 or 4 hours per day of “good” or “on” time.  This is normal.  To help, families can: 
Schedule important activities for these “good times;” 
Incorporate plenty of time for naps or downtime; and 
Limit activities until endurance increases. 

Similarly, families often want to plan “welcome home parties” and family events at this time.  Remember, eve- 
nings may be hard, and, again, time limits are often best.  Consider: 

Limiting parties/visits to one hour or so; and 
Limiting the number of visitors at one time. 

Another challenge of going home can be finding new roles that work for everyone. You may find yourself doting 
on your loved one, talking down to them or treating them with pity. They may seem to be a different person alto- 
gether.  Topics of conversation may be focused on therapy or medical things—and not encompass things you 
both are interested in, love, or used to enjoy together.  Crafting new family relationships can be hard, but it may 
be helpful to remember how things used to be, to try old interests (perhaps in a new way), and to- in as much as 
possible- treat your loved one as you always did. 

Safety at home can be another consideration. When possible, make sure the rehabilitation hospital staff check 
out your home for any physical considerations and other recommendations for safety.  In addition to looking at 
steps and bathrooms, they should consider things like: 
•  Will your loved one have too much access to dangerous items? 
•  Is furniture arranged in a way that best promotes independence and mobility? 
•  Are there area rugs or other tripping hazards? 
•  Will your loved one be able to access and use technology like the phone, remote control, computer)? 
•  Would posting any reminder signs (like emergency info or checklists) be helpful? 
•  Would an alarm be helpful? 

Like going home, returning to work can be a big target in the rehabilitation process. It can also be a real chal- 
lenge.  For some individuals, going back to their job will be obviously unrealistic. For others, it may be a consid- 
eration.  Either way, figuring out a meaningful way to spend time –through work, volunteering, or even school-- 
is a critical part of recovery after a TBI. 

If your loved one is considering going back to his or her job, you should talk to their rehabilitation team about 
planning for this.  The team should be able to plan ahead for this by learning about the job and its demands, 
evaluating your loved one’s ability to do all parts of the job, and making recommendations about a return-to- 
work schedule and any strategies or supports necessary.  They might also recommend additional help from the 
vocational rehabilitation agency in your county or a conference with your loved one’s employer. 

If returning to a past job is not possible, your loved one may need to look 
at his or her life and begin thinking about how to spend time.  Once for- 
mal rehabilitation services are over, it is important to identify an “activity 
pattern” that will keep your loved one engaged in the world.  Most indi- 
viduals want and need to be productive.  Work (volunteer or paid) is one 
of the best ways to achieve this as well as a social connection with others.  
Work is a way for individuals to continue to build skills and endurance, 
meet people, and feel independent.  Again, your state vocational agency 
and rehabilitation team can help with this. 

Getting back to school is another hallmark for many people with TBI.  For chil- 
dren and adolescents, it will be a way to get back into life and continue to reha- 
bilitate.  In fact, schools provide-by far- the greatest amount of rehabilitation to 
individuals with TBI under the age of 21. 

Discharging rehabilitation teams and schools should work closely together to make sure the student’s educa- 
tional plan is well-suited to his or her abilities and needs.  School-aged children with TBI are eligible for special 
accommodations and instruction in school.  It is very important for families to realize that the school can and 
must provide services based on the unique needs of your child 

Returning to school can also be challenging for individuals in college or who are considering further education 
after their TBI.  A number of the problems associated with brain injury make this so.  Problems with thinking 
and memory make new learning particularly difficult.  Fatigue and quick “overloading” may make a full schedule 
and the demands of a post-secondary school program difficult.  There can also be considerations with regard to 
problems with behavior and social skills. 

Colleges and other post-secondary schools are not obligated to offer special services, without cost, in the same 
ways that public schools (to grade 12) are.  There are some accommodations, however, that a post-secondary stu- 
dent can access through Section 504 of the Rehabilitation Act.  These accommodations include things like un- 
timed tests, tape-recorded textbooks, and preferential seating.  Regardless, the decision to pursue post-secondary 
  education after a TBI is one that should be made with input from your loved one, rehabilitation professionals, 
and when possible the school itself. 

So much changes after a TBI that it is inevitable that relationships will change too. Family roles shift as care- 
givers become care-receivers, bread-winners no longer work, personalities change, and family needs change alto- 
gether. There is no model that can predict the changes that will happen in your family, but it is safe to say that 
your relationship with your loved one will change. It may never be the same as it once was; however, over time, many 
families do find a new way of relating that works for them and brings them satisfaction. 

Other changes in family relationships often have to do with communication.  In the time right after the injury 
family members have probably spoken of little more than the injured person and all of the details of his or her 
recovery.  People may not know what is going on in each others’ lives, let alone how other members of the family 
are feeling. Some may feel it is not okay to talk about these feelings and 
others will find a way to be understood.  There are some ways that may be 
useful to improve communication: 

Set aside times for family members to share what is going on in 
their lives (dinner once a week). 
Make sure everyone knows it is okay to talk about what has 
happened and how they feel—even if those feelings are 

You may also find that your family seems less affectionate.  This is related to communication and can often be 
helped in the same ways.  It can also have to do with the problems that your loved one is having.  Feeling less 
affectionate towards each other is not uncommon. It does not mean you love each other less.  Sometimes, work- 
ing with a psychologist or other rehab professional can help in this area. 

Friendships are another kind of relationship worthy of mention.  Immediately after the injury, friends often 
abound.  They visit, send cards, and inquire about their friend. Over time, though, many of these friendships 
fade away. In fact, some even call this the 90% rule—over a one to two year period, people with TBI will lose 
about 90% of their friends.  Friends often cannot deal with the changes they see and are not sure how to con- 
tinue their relationship with your loved one.  Understandably, this is hard on everyone.  There are some things 
you can do to make a difference: 
Include/invite friends in small, short activities—ones where you anticipate success; 
Offer some TBI education to friends-they may not understand what is going on: 
Explore how they are feeling and share your feelings too; 
Acknowledge with them that their relationship may be different but can still continue—and let them 
know that it is important to you and your loved one. 
Accept and encourage new friendships—Remember people just meeting your loved one don’t have an 
“old friend” to compare him or her to.  

TBI:  Impact on the Family 
Life after a brain injury is changed forever—for the survivor and for his or her family.  Know that this is normal- 
and that over time, most families find a new balance and some predictability. However, you may feel stuck, over- 
whelmed, unable to see a “way out.”  Other common feelings include: 
 Anxiety and Nervousness 

Some of the common changes in lifestyle that you might expect include: 
 Less time for yourself 
 Financial challenges 
 Problems with communication 
 Role changes 
 Lack of understanding and support among friends and other family members  

After a brain injury, families often find their lives turned upside down and completely focused on the person 
with TBI.  Families try to make sure their loved one has everything he or she needs. They also have to continue 
the critical components of their own lives—like work and household responsibilities.  This leaves little if any time 
for attending to personal needs. Unfortunately, this is a recipe for disaster. 

Recovery from TBI is a long journey.  It requires family members to be there over the long-run. Burn-out, or ex- 
haustion, comes when family members do everything for or with their loved one to the exclusion of rest and per- 
sonal rejuvenation.  Burn-out often leaves family members so overwhelmed and exhausted that they are unable 
to be helpful.  For this reason, it is recommended that family members secure support early in the game. Family 
members have reported the following as those strategies they found most helpful: 
Accepting help from friends and other loved ones 
Seeking out and attending a family support group 
Taking breaks from the hospital or rehabilitation setting 
Finding someone to share your feelings and concerns with on a regular basis 
Maintaining a sense of humor 
Being more assertive 
Trying to see things realistically 
Being careful not to blame everything on the injury 
Learning to relax 

Relaxation deserves special mention, yet this advice is rarely heeded.  Since the injury, you have probably been 
under a great deal of stress.  A little stress is natural-and can even be good for us. However, too much stress over 
an extensive period of time can wreak havoc on your body and mind. Stress has been linked to heart disease, 
cancer, stroke, headaches, and other medical problems. It can also cause your performance in other areas to suf- 
fer. You may find you are less organized or unable to concentrate and think clearly. Your temper may flare up 
easily, you may be less patient, and you may even find yourself lashing out at others. For this reason, stress often 
has a negative effect on your relationships with others.  
Learning to relax, especially during a time of high stress, is not easy. Some tried-and-true techniques to try in- 
 Muscle tensing and relaxing: 
  Lie down in a comfortable place with your eyes closed. 
  Tense one of your feet as you breathe in. 
  Release as you breathe out. 
  Continue with your other foot and then other areas of your body. 

 Focused breathing 
  Lie down on your back in a comfortable place. 
  Put your hands just below your belly button. 
  Close your eyes and breathe in, forcing the air into your belly. 
  Exhale slowly and imagine the stress leaving your body. 

 Visual Imagery 
  Lie down on your back in a comfortable place. 
  Imagine yourself in a comfortable place; a place where you usually feel relaxed. Perhaps the beach 
   or the mountains. 
  Imagine the sights, smells, and sounds—relax. 

 Use a word to help you focus 
  Choose a word or short phrase that has a positive meaning for you. (An example might be  
  Take full deep breaths from your diaphragm. 
  Say the focus word each time you breathe out. 

Other Valuable Stuff 

It is almost too hard to think about all that a person loses after a TBI.  From not being able to play a certain 
sport or drive or get a date or even remember yesterday, the losses are sometimes too many to count. And in re- 
hab, the focus is often on little parts of a person—how he or she steps, a calendar system, a checklist for hygiene— 
often without a genuine acknowledgement of the real concerns and big goals. 

One of ReMed’s founders, Dr. David Strauss, believed that looking at the whole person and his or her real life 
was of the utmost importance. He believed that each person’s life was his or hers to live and that each person 
had a different vision of "happiness" and "quality of life."  

People with traumatic brain injuries have fewer options for work and play.  They are often alone, depressed, and 
more likely to turn to drugs and alcohol.  Yet most rehabilitation programs work from a perspective of treating 
individual problem areas without considering a person’s ability to define what makes them happy?  Rehabilita- 
tion programs need to do a better job of asking  people with TBI what they want.  No one wants rehab for the 
sake of rehab. They want to regain meaningful relationships, go back to work, and enjoy activities that make 
them feel good.   

The first step in therapy should be helping a person to develop his or her own definition of "quality of life.”  The 
answers to "What is important to you?" and "What makes you happy?" are cornerstones for good therapy.  They 
are more important than any data, treatment plan or model. 
Remember this: The goal of every life is to have meaning—not for the rehabilitation program, but for the person.

Sometimes getting along with your loved one is harder than you could ever imagine. David Strauss, one of 
ReMed’s founders, insisted that staff learn ways to interact with clients that were real, respectful, and positive. 
Here are some of his tips to people working in the field. They are easily applicable to family members and 

 The first thing to do in a stressful situation is nothing. 
 Listen to what you say and how you say it.  Are you supportive? Punitive or Critical? 
 Remind folks that you are there to help. 
 Give criticism or feedback privately. It’s a matter of respect.  
 Be aware of your non-verbals.  What signals are you sending? 
 Always say what you will do before you do it. 
 Ask permission before you ask a question or disagree. 
 Don’t expect immediate change.  

Your relationship with your loved one’s doctors will absolutely affect the kind of care you receive.  Working with 
a doctor who is experienced in TBI will make your life easier and your loved one’s treatment more efficient and 
effective.  Having a great doctor, though, is not enough. It is important for you and your loved one to be good 
reporters, communicators and evaluators. 

Here are some tips for making the most of your relationship with your doctor: 

Prepare for your appointment. Bring a complete list of your concerns and observations. Be specific when  
 possible, especially about how often and how severe problems are. 
Take medication as prescribed!!!  If there is trouble tolerating a medication, call your doctor. Do not stop a 
 drug without consulting him or her. Stopping a medication cold can cause medical problems and it may 
 change the kinds of medicines a physician is willing to prescribe. If your doctor does not think you will 
 follow through with his or her recommendations, he or she may be less willing to try new things. 
Be sure to report progress too. Your doctor absolutely wants to hear about what is going well. 
Make sure that each doctor knows about any other treating physicians, any other medications that have been 
 prescribed (or discontinued). It is helpful to sign releases in each doctor’s office so that the  doctors can 
talk to one another and get each other’s paperwork.  

What do you need to keep track of? What is the best way to do that? 

Many family members have found that it is very helpful to start a formal record-keeping system to track all of the 
important papers and information they receive about their loved one.  What will work best for you is a matter of 
preference. Some suggestions include: 
•  Get a portable file carrier. Keep several folders in it for things you may need to take with you. Folder  
  titles might include:  Rehabilitation Reports, a Folder for each Doctor, Bills, Disability Claims, 
  TBI Information, and Contact Information. Carry this with you to important appointments so 
  you don’t have to search for just the right document. 
•  Keep notes on your contacts with social workers, case managers, employers/school contacts, and the like. 
  Sometimes short notes on your calendar will do. This is a way to track promises made and the 
  need for follow-up. 
•  Ask for a copy of prescriptions, recommendations, and important  
  meeting minutes on the spot! This will help you track what  
  you need to do.  

An After Word ...    

 Living with or supporting an individual who has experienced a traumatic brain injury is a journey akin to a mara- 
thon, not a sprint.  In the days, months and years following such an event, it is important to try to maintain per- 
spective and “celebrate” even the smallest milestones and accomplishments. 

As social beings, it is critical to keep people and supports in the life of both the individual and the caregivers.  It 
is not a journey one wants to take alone. 

We hope you have found some useful ideas and suggestions in this guide. We especially hope that you have 
found an acknowledgment of what you are thinking and feeling as we know how hard it will be for others out- 
side of your day to day life to truly understand what has occurred.   

While TBI is life-altering for all in its path, it should not diminish the human spirit.  Life will be different, yes, 
but it can still be a life filled with happiness, hopes and dreams.  

Joanne Finegan, MSA, CTRS 
Chief Executive Officer