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COMA GUIDE FOR 
CAREGIVERS 

Delaware Health and Social Services, Division of Services 
for Aging and Adults with Physical Disabilities 
1901 N. DuPont Highway ° New Castle, DE 19720 1 
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OUR VISION FOR THE 21ST CENTURY 
Delaware Health and Social Services' Division 
of Services for Aging and Adults with Physical 
Disabilities, while pursuing its mission to its 
customers, will move into the 21st century by 
pursuing a multi-faceted approach to success. 
It must also prepare to serve the succeeding 
generations, whose needs may require uniquely 
different approaches and resources. Our focus on 
advocacy, diversity, partnering, technology, and 
education will enhance our efforts for success in 
providing quality services to our customers, 
empowering them for greater independence. 2 
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Dear Friends: 
Families who are going or have been through the experience of 
having a family member or friend in coma have many needs. As 
caregivers of a person who is in coma or recently recovering 
from a coma, they may have many concerns and questions in 
trying to cope with a serious illness. This guide was developed 
as a result of the need we identified, when our 29-year-old 
daughter, Jill Elizabeth Russell Eddy was in coma for 12 months. 
We had no such guide or central place where comprehensive 
information and resources on coma could be easily obtained. 
When we spoke to our State Representative, William Oberle, he 
understood our concerns and enthusiastically supported the 
idea of the COMA GUIDE FOR CAREGIVERS. 

My family and I would like to thank Representative Oberle and 
the Division of Services for Aging and Adults with Physical 
Disabilities for their wonderful support and untiring efforts to 
make this Guide a reality. 

It is my sincere hope that the informa-tion 
supplied in this booklet will be 
beneficial to families who are dealing 
with such a tragedy and in some small 
way will bring support and comfort 
during their time of need. 

Linda Morrison Russell, 
Mother of Coma Patient 

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Michael, Jill, and Megan Eddy 3 
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ACKNOWLEDGEMENTS 
OUR SPECIAL THANKS TO THE FOLLOWING PEOPLE: 

Division of Services for Aging and Adults with 
Physical Disabilities, Coma Task Force 

Carol Barnett and Linda Heller, Senior Planners, 
Division of Services for Aging and Adults with 
Physical Disabilities 

The Timothy Aberle and Frank Harrington Families (cover photo) 

NOTE: 
To obtain a copy of this Guide, or for further information, contact the 
Division of Services for Aging and Adults with Physical Disabilities 
1901 N. DuPont Highway, New Castle, DE 19720 
(302) 577-4791 or 1-800-223-9074 
e-mail: cbarnett@ state. de. us 

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TABLE OF CONTENTS 1 Dedication 
2 Acknowledgements 
4 Introduction 
5 The Brain 
7 What Happens with Brain Injury? 
8 How are Brain Injuries Evaluated? 
9 How are Brain Injuries Treated? 
10 What other Treatments May be Used? 
11 What Equipment Will You See? 
12 Coma Scales and Coma Stimulation Programs 
14 The Effects of a Brain Injury 
20 Who Will Help After a Brain Injury? 
22 How Will You React? 
23 Family Issues 
26 How Can You Help with Recovery? 
28 Treatment and Rehabilitation 
30 Financial Assistance 
32 How to Evaluate a Nursing Home 
34 TBI Statistics and Facts 
35 Regional Coma and Brain Injury Rehabilitation Programs 
36 Delaware State Resources 
37 Resource Guides 
38 Coma Resource List 
39 Print Resources 
41 Glossary 
43 Resources for Families of Persons in Coma 

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Note: You can click on an entry in the table of contents to go directly to the 
section of the 
Guide that you want to see. 5 
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INTRODUCTION A sudden traumatic brain injury of a family member or close friend 
can be over-whelming 
and frightening. Added to this stress is the uncertainty associated with 
brain injury. It is difficult for any physician to predict the outcome during 
the 
first days, weeks, and even months. Along with family members, they must 
"wait and see" how the patient progresses. Struggling to understand this 
com-plex 
condition, most people feel alone and confused. 

Although each family member or friend deals with the crisis in his/ her own way, 

all can benefit from certain basic information. This resource guide provides a 
variety of helpful material. The first section describes the structure and 
function 
of the brain and goes on to explain the effects of injury. Patient care in the 
inten-sive 
care unit (ICU) and in other hospital settings is also addressed. The second 
section of the booklet discusses post-traumatic reactions of family members and 
close friends and answers some common questions. A glossary of hospital terms 
is also included in the back of the booklet. 

Although family and friends may be anxious to learn more about brain injury, 
reading a resource guide may be difficult during such a trying time. It may be 
hard to concentrate and remember explanations. Each person is different, 
how-ever. 
Some want to learn everything they can as quickly as possible. Others 
prefer taking in information a little bit at a time. 

Read this resource guide at your own pace, perhaps a section at a time. In fact, 

some people like to start with the questions and answers. Many find it useful to 

jot down questions as they go along. You may wish to use the blank note page in 
the back of the resource guide for this purpose. In addition, keeping a journal 
or 
diary of events, feelings, concerns, and questions is usually helpful. 

Plan to use this resource guide as you collect information about brain injury 
and 
discuss your concerns with family, friends, and caregivers. We hope this booklet 

provides a strong foundation of information for the days ahead. 

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NOTICE: The purpose of the following information is to review certain medical 
issues. The information contained herein has been supplied as a courtesy from 
Bryn 
Mawr Rehab, Malvern, PA, and thus shall not be reproduced nor be construed as 
medical advice or opinion and is not intended as medical advice or opinion. 

Though the brain looks like a uniform struc-ture, it is actually divided into 
many parts 
that perform very specific functions. Many of these different brain areas are 
active simulta-neously 
or sequentially during daily activities. Consider, for 
example, that the simple act of 
drinking a glass of water requires at 
least 9 separate brain functions. You 
decide to drink, initiate the act of 
drinking, receive visual information 
about the glass, move your arm and 
hand to the glass, receive sensations 
from your hand that the glass is in 
it, coordinate the movement of the 
glass to your mouth using your hand 
and arm, and then coordinate the sequential movements of your mouth, tongue, and 

throat to take a sip while taking a pause in breathing. 

This is quite a bit of activity to occur in just a few seconds. Yet the brain 
manages to per-form 
these kinds of routine actions regularly and speedily through constant 
communica-tion 
between one part and the next. An injury, however, can interrupt the connections 

between the areas of the brain and so inhibit the simplest tasks. 

The brain is very complex. Though researchers are constantly making 
new discoveries about how it functions, it is possible through a basic 
explanation of the organ to gain some understanding of it's behavior. 

Although each brain area is involved in many varied functions and each activity 
requires 
involvement of many brain areas, certain types of deficits commonly occur after 
an 
injury to a specific part of the brain. In fact, in 

some cases, the areas of the brain that have been damaged can be identified by 
the 
changes the individual exhibits afterward. 
As the director of all the body's functions, the brain uses a great many 
resources. At least 20 
percent of the blood the heart pumps goes to the brain, and several million 
nerve cells 
send, receive, and interpret messages that keep us functioning and acting 
purposefully. 

For the sake of description, the brain is divided into 3 main regions: the brain 
stem, 

T HE BRAIN: STRUCTURE AND FUNCTION 
Diagram 1. Cross Section of the Brain 7 
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the cerebellum, and the two cerebral hemi-spheres. The cerebral hemispheres are, 
in turn, 
divided into four lobes. 
The main brain regions and the lobes are identified in Diagrams 1 and 2. 
Descriptions of 
the different areas follow, along with the primary functions they control. 

SKULL The bones that come together to completely 
cover and protect the brain. 

BRAIN STEM Although this area is anatomically small, it 
plays a very important role in many brain functions. Injuries to the brain stem 
can affect 
motor function, eye movement, speech, swal-lowing, and the level of 
consciousness. 

CEREBELLUM This area is particularly important in coordina-tion 
and balance. 

CEREBRUM The largest part of the brain, it is divided into 
the left and right cerebral hemispheres. Gener-ally, each hemisphere directs the 
motor and 
sensory functions for the opposite side of the 

Diagram 2. Lobes of the Brain 
body (i. e., the left hemisphere governs the right side of the body and vice 
versa). The hemi-spheres 
also have specific roles. For example, the left hemisphere of right-handed 
people 
governs language functions and the right hemisphere is particularly important in 
visual-spatial 
functions. Each hemisphere is then divided into four lobes (as noted in Diagram 
2), 
which have specific functions. 

FRONTAL LOBES Govern personality, expression of emotion, 
storage of information, abstract thought, problem-solving, ability to organize, 
concentration, and the ability to initiate action and movement. 

PARIETAL LOBES Important in sensation, perception, attention 
and complex aspects of brain processing. 

TEMPORAL LOBES Regulate memory function, language informa-tion, 
and behavior. 

OCCIPITAL LOBES Responsible for aspects of visual function. 8 
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W HAT HAPPENS WITH BRAIN INJURY Even though the brain is well protected, it may 
be injured. Damage to the brain may occur immediately, or it may develop after 
the injury due to swelling or bleeding. The skull 
is usually filled like this: 

After brain injury, the contents may change. The brain tissue may swell, causing 
it to take 
up more room in the skull. This is called edema. When this occurs, the swollen 
brain 
tissue will push the other contents to the side. 

There may be bruising called contusions or a collection of blood called a 
hematoma or clot. 
This may also push the other contents to one side. 

The flow of Cerebrospinal Fluid may also become blocked. This will cause the 
open 
spaces (ventricles) to become enlarged. This is called hydrocephalus. 

Any of these changes can cause increased intracranial pressure. 

Ventricles filled with 
Cerebrospinal Fluid 
Brain Tissue 

Blood 
Hematoma or clot 

Enlarged 
ventricles 

Swollen brain 
tissue (edema) 

NORMAL BRAIN 

BRAIN WITH 
EDEMA 

BRAIN WITH A 
HEMATOMA 

NOTICE: This section of the document is copyrighted by the University of Iowa 
and Karen Stenger, R. N., M. A. The Virtual Hospital is a registered trademark 
of the 
University of Iowa. The original copy of this document is maintained on the 
Virtual Hospital (http:// www. vh. org). Please refer to it for the most 
up-to-date version of 
the document. 

BRAIN WITH 
HYDROCEPHALUS 9 
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Patients with brain injury require frequent assessments and diagnostic tests. 
These 
include: 
°NEUROLOGICAL EXAM: A series of questions and simple commands to see if the 
patient can open their eyes, move, speak, and understand what is going on around 

them. For example: What is your name? Where are you? What day is it? Wiggle 
your toes. Hold up two fingers. 
° X-RAY: A picture that looks at bones to see if they are broken (fractured). It 
can also 
be used to take a picture of the chest to look at the lungs. This test may be 
done at 
the bedside or in the X-ray department and takes between 5-30 minutes to 
complete. 
°CT SCAN (CAT SCAN): An X-ray that can take pictures of the brain or other parts 
of 
the body. The scan is painless but the patient must lie very still. The test 
takes 
30-60 minutes to complete. 
° MRI (MAGNETIC RESONANCE IMAGING SCAN): A large magnet and radio waves 

are used, instead of X-rays, to take pic-tures of the body's tissues. It is 
painless 
but noisy. The machine is shaped like a long tube. The patient must lie on a 
flat 
table in the middle of the machine. The test takes about 60 minutes to complete. 


°ANGIOGRAM: A test to look at the blood vessels in the brain. Dye is put into a 
cath-eter 
in an artery (usually in the groin) that supplies blood to the brain. This test 
can tell 
if the arteries or veins have been damaged or are spasming. The test takes 1-3 
hours. 

° ICP MONITOR: A small tube placed into or just on top of the brain through a 
small 
hole in the skull. This will measure the pressure inside the brain (intracranial 

pressure). 
° EEG (ELECTROENCEPHALOGRAPH): A test to measure electrical activity in the 
brain. 
Special patches called electrodes are applied to the head to measure the 
activ-ity. 
The test is painless and can be done at the bedside or in the EEG department. 
The 
length of the test varies. 

H OW ARE BRAIN INJURIES EVALUATED? 

NOTICE: This section of the document is copyrighted by the University of Iowa 
and Karen Stenger, R. N., M. A. The Virtual Hospital is a registered trademark 
of the 
University of Iowa. The original copy of this document is maintained on the 
Virtual Hospital (http:// www. vh. org). Please refer to it for the most 
up-to-date version of 
the document. 10 
10 Page 11 12 
PAGE 9 
Treatment of brain injury is aimed at: ° Stopping any bleeding 
° Preventing an increase in pressure within the skull 
° Controlling the amount of pressure, when it does increase 
° Removing any large blood clots 
Treatments will vary with the type of injury. The doctor will decide which ones 
are used. 
These may include: 
POSITIONING: Usually the head of the bed will be elevated slightly and the neck 
kept straight. 
This position may decrease the intracranial pressure by allowing blood and 
cerebrospinal 
fluid to drain from the brain. Please do not change the position of the bed 
without asking 
the nurse. 
FLUID RESTRICTION: It may be necessary to limit the fluids that a patient 
receives. The brain is 
like a sponge. It swells with extra fluid. Limit-ing fluids can help control the 
swelling. Please 
do not give fluids without asking the nurse. 
MEDICATIONS: There are several types of medi-cations used with brain injury. 
Some of these 
include: 
° Diuretics are used to decrease the amount of water in the patient's body. This 
makes 

less water available to the brain for swelling. 

° Steroids are used to decrease swelling in the brain tissue. 
° Barbiturates are given if the patient's intracranial pressure is very high and 
hard 
to control. This medicine puts the patient into a deep "sleep" called a 
barbiturate 
coma. This may help prevent more swell-ing and damage. 

° Anticonvulsants are used to prevent seizures. Seizures occur as a result of 
extra 
electrical activity in the brain. There are several types of seizures. The most 
com-mon 
type causes the patient to have jerking movements of the arms and legs 
followed by sleep. Other types may cause slight tremors of the face, or staring 
spells. 
Please notify the nurse or doctor if you see any signs. Some patients have a 
seizure at 
the time of injury while others may de-velop seizures after the injury. 

VENTRICULAR DRAIN (VENTRICULOSTOMY): A small tube that is placed in the 
ventricle and con-nected 
to a drainage bag. It measures pressure inside the skull and drains CSF 
(cerebrospinal 
fluid). Some CSF is drained out of the brain to help control the pressure inside 
the skull. 
Pressure changes may be quickly seen and treated. 

VENTILATOR: A machine used to help the patient breathe. Ventilators may breathe 
for the patient 
or they may be used to give extra breaths. When extra breaths are given the 
patient's 
blood vessels in the brain become smaller and this helps control the 
intracranial pressure. 

SURGERY: There are three types of surgery used with brain injury: 
° Craniotomy -The skull is opened to relieve the causes of increased pressure 
inside the 
skull. Causes may be fractured bones, blood clots, or swollen brain tissue. 

° Burr holes -A small opening is made into the skull to remove blood clots. 
° Bone flap removal -A piece of bone is removed from the skull to relieve 
pressure 
caused by swollen brain tissue. 

H OW ARE BRAIN INJURIES TREATED? 

NOTICE: This section of the document is copyrighted by the University of Iowa 
and Karen Stenger, R. N., M. A. The Virtual Hospital is a registered trademark 
of the 
University of Iowa. The original copy of this document is maintained on the 
Virtual Hospital (http:// www. vh. org). Please refer to it for the most 
up-to-date version of 
the document. 11 
11 Page 12 13 
PAGE 10 
ANTIBIOTICS: Antibiotics are used to prevent and treat 
infections that occur. It is not unusual for people with brain injuries to get 
infections. 
They may get pneumonia, bladder infections, blood infections, or infections in 
the brain or 
cerebrospinal fluid called meningitis. 
CHEST PT AND SUCTIONING: If the patient has pneumonia you may see 
staff using a vibrating machine or clapping on the patient's chest. This loosens 
the 
phlegm in the lungs. Then the patient will be asked to cough. If the patient is 
not able to 
cough up the phlegm they must be suctioned. When a patient is suctioned a 
catheter is 
placed in the back of the throat or into the lungs. 

TRACHEOSTOMY (TRACH): If the patient has a large amount of lung 
secretions or is on a ventilator for a long time they may need a trach. A trach 
is a tube 
placed in the trachea (windpipe). It will make it easier for the patient to 
cough up phlegm. It 
also allows the nurse to suction the lungs. 

Initially patients will be unable to talk while the trach is in place. A trach 
is not usually 
permanent. As the patient improves, they may be able to have the trach taken 
out. 

SUCTIONING OF THE STOMACH: Sometimes after brain injury, the stomach will 
stop working for a short time. This is called an ileus. Even though the stomach 
may not 
be working it continues to make acids. The acids may damage the stomach lining 
and 
cause stomach ulcers if they are not removed. 

A nasogastric tube (NG) will be placed through the nose into the stomach. This 
tube will be 
used to help remove stomach secretions. Medications may also be given to help 
prevent 
stomach ulcers. 
NUTRITION: Meeting nutrition and fluid needs are impor-tant 
after brain injury. Patients may be less active, yet have very high nutritional 
needs. At 
first, nutrition can be supplied by an IV. When the stomach starts working an 
evaluation of 
chewing and swallowing safety will be com-pleted. If the patient is too sleepy 
to eat, or is 
unable to swallow, a small nasogastric feeding tube may be used for nutrition. 
The tube is 
placed through the nose into the stomach. Liquid formula will be given through 
the 
feeding tube. Feedings may be given continu-ously or several times a day. The 
dietician will 
assist with food and fluid selection. Milk-shakes and liquid formulas may also 
be used 
to provide extra calories and high protein nutrition. 

BOWEL AND BLADDER CARE: Patients may not have control of their bowel or 
bladder. Catheters or diapers will be used until bowel and bladder control 
returns. 

SKIN CARE: Activities such as turning, padding equipment, 
keeping skin clean and dry, using special mattresses, and making sure the 
patient gets 
enough calories help prevent bedsores. 

RANGE OF MOTION (ROM) AND SPLINTS: Brain injured patients may not move their 
joints as much as needed. This can cause tight muscles and joints called 
contractures. Range 
of motion (ROM) exercises and special splints for hands and feet help prevent 
contractures. 

PAIN CONTROL: Comfort measures and medication will be used 
for pain control, however, medications may be limited to types that do not cause 
drowsiness. 

W HAT OTHER TREATMENTS MAY BE USED? 12 
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W HAT EQUIPMENT WILL YOU SEE WHEN YOU VISIT? 
MONITOR SCREEN: A machine used to keep track of heart rate, breathing, blood 
pressure, 
and intracranial pressure. 
HEAD DRESSING: A bandage around the head used to keep the wound or incision 
clean 

and dry. 
ICP MONITOR: A small tube placed into or just on top of the brain through a 
small hole 

in the skull. This will measure the amount of pressure inside the brain 
(intracranial pres-sure). 

NASOGASTRIC TUBE: A tube placed through the nose into the stomach that can be 
used to 
suction the stomach or provide liquid for-mula directly into the stomach. 

ENDOTRACHEAL TUBE: A tube inserted through the patient's nose or mouth into the 
trachea 
(windpipe) to help with breathing and suctioning. 

EKG LEADWIRES: Wires connected to the chest 

with small patches that measure the heart rate and rhythm. 
INTRAVENOUS CATHETER (IV) AND INTRAVENOUS FLUID: A flexible catheter which 
allows fluid, 
nutrients, and medicine to be given directly into a vein. 

VENTILATOR: A machine used in the Surgical Intensive Care Unit that may assist 
with 
breathing or breathes completely for a patient. 
ANTI-EMBOLISM STOCKINGS (FREQUENTLY CALLED TEDS): Long white stockings used to 
help 

prevent blood clots in the legs. 
SEQUENTIAL COMPRESSION STOCKING (FREQUENTLY CALLED KENDALLS): Plastic leg wraps 
that help 

prevent pooling of blood in the legs by inflating and deflating around the legs. 


FOLEY CATHETER: A tube inserted into the bladder to drain and allow for accurate 
mea-surement 
of urine. 

INTRODUCTION When the patient is seen 
in the emergency room the doctor will decide 
which treatments to use. A variety of equipment will 
be needed. It is helpful to know the purpose of 
equipment used. Please feel free to ask the staf f 
any questions you may have. The following 
picture and text describe some of the most common 
equipment. 

Monitor screen 
Head dressing 
Endotracheal tube 

ICP monitor 

Ventilator 

Anti-embolism stocking 

Foley catheter Sequential compression 
stocking 

IV catheter 

EKG lead wires 
IV fluid 13 
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PAGE 12 
C OMA SCALES AND COMA STIMULATION PROGRAMS There are several scales used to 
describe patients with brain injury. The Rancho Scale is used more often by 
health care providers to indicate levels of recovery. The Glascow Coma Scale 
rates eye opening, motor movement (movement of the arms and legs), and verbal 
response. 
EYE OPENING 4 = Spontaneously 
3 = To voice 2 = To pain 
1 = No response 

Rehabilitation centers may use a scale called the Rancho Levels. The eight level 
scale was 
developed by the professional staff of the Rancho Los Amigos Hospital in Downey, 

California to describe the stages of recovery after brain injury. What follows 
is a simpli-fied 
explanation of each level of recovery. 
Remember, the patient never fits neatly into one level of the scale, but rather 
into a 
general area, exhibiting characteristics of several levels. Also be aware that 
individual 
patients progress through the levels at different speeds, some skipping levels, 
others "getting stuck" for a while. 
The following is a brief description of the Ranchos Los Amigos Scale of 
Cognitive 
Functioning: 
LEVEL 1 -No response. The patient appears to be in a very deep sleep or coma and 
does 
not respond to voices, sounds, light, or touch. 

BEST MOTOR RESPONSE 6 = Follows commands 
5 = Localizes to pain 4 = Withdrawal to pain 
3 = Decorticate 2 = Decerebrate 
1 = No Response 

BEST VERBAL RESPONSE 5 = Oriented and converses 
4 = Disoriented and converses 3 = Inappropriate words 
2 = Incomprehensible sounds 1 = No response 

GLASCOW COMA SCALE 

RANCHOS LOS AMIGOS SCALE 
LEVEL 2 -Generalized response. The patient moves around, but movement does not 
seem to 

have a purpose or consistency. Patients may open their eyes but do not seem to 
focus on 
anything in particular. 
LEVEL 3 -Localized response. Patients begin to move their eyes and look at 
specific people and 

objects. They turn their heads in the direction of loud voice or noise. Patients 
at Level 3 may 
follow a simple command, such as "Squeeze my hand." 

LEVEL 4 -Confused and agitated. The patient is very confused and agitated about 
where he or 
she is and what is happening in the surround-ings. At the slightest provocation, 
the patient 
may become very restless, aggressive, or verbally abusive. The patient may enter 
into 
incoherent conversation. 
LEVEL 5 -Confused, inappropriate but not agitated. The patient is confused and 
does not 

make sense in conversations but may be able to follow simple directions. 
Stressful situations 
may provoke some upset, but agitation is no 14 
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PAGE 13 
longer a major problem. Patients may experi-ence some frustration as elements of 
memory 
return. 
LEVEL 6 -Confused but appropriate. The patient's speech makes sense, and he or 
she is 

able to do simple things such as getting dressed, eating, and teeth brushing. 
Although 
patients know how to perform a specific activity, they need help in discerning 
when to 
start and stop. Learning new things may also be difficult. 

LEVEL 7 -Automatic, appropriate. Patients can perform all self-care activities 
and are usually 
coherent. They have difficulty remembering recent events and discussions. 
Rational judg-ments, 
calculations, and solving multi-step problems present difficulties, yet patients 
may 
not seem to realize this. 
LEVEL 8 -Purposeful and appropriate. At this level, patients are independent and 
can process 

new information. They remember distant and recent events and can figure out 
complex and 
simple problems. 
For a more detailed explanation of the 8 levels of the scale and effective 
interventions, read the article 

"AAC and TBI: Transitioning Systems through the Phases of Recovery," by Dana 
Scroggs, MHS, CCC-SLP, 
at the Charlotte (N. C.) Institute of Rehabilita-tion, at (704) 355-7119. The 
web site address for the 
article is www. kaddath. mt. cs. cmu. edu 
Coma is an unresponsive state so the patient is not able to open his eyes. Coma 
may serve as a 
mechanism for the brain to preserve itself during times of extreme stress, such 
as follow-ing 
an injury. It is important that families know the rehabilitation process can 
begin 
while the patient is still in a coma. The impor-tance of early intervention is 
supported by 
recent studies. The length of time that a person is in a coma, does not 
necessarily determine the 
degree of recovery. 
Health care professionals use a variety of therapeutic techniques and programs 
to move 
patients from a state of unconsciousness (coma) toward a greater awareness of 
their 
environment. Many of the programs are based on the theory that intense 
stimulation of the 
senses will excite the brain's reticular activating system, which is responsible 
for arousal and 
wakefulness. Scientists report that the brain is fairly plastic and has the 
ability to modify its 

own structural organization and function, although the actual mechanisms that 
cause this 
to occur are not yet fully understood. Many believe that environmental 
enrichment and 
sensory stimulation can accelerate the recovery process. Sensory stimulation 
should focus on 
verbal conversation, familiar objects and memories, such as personal blankets, 
record-ings 
of favorite music, pets, and posters. Some researchers recommend vigorous 
stimulation of 
the senses, using, for example, ringing alarm clocks, rubbing the skin, pleasant 
and unpleas-ant 
flavors and smells put on the tongue or held to the nose, or bright lights 
flashed in front 
of the eyes. The sensory stimulation programs are also careful to modulate the 
amount of 
stimulation given to the patient and are work-ing to develop precise, structured 
regimens to 
avoid random stimulation and overstimulation. 
We have listed, in the appendix to this guide, several sources of information 
related to coma 
and coma stimulation and how you may help the therapists with your loved one's 
rehabilitation. 

Using information from the Rancho Scale, the health care team can begin 
treatment that will 
help develop skills and promote appropriate behavior. Health care professionals 
often 
suggest the following simple measures to family and friends while the patient is 
still in 
coma: 

° Always talk as if the patient hears when you are nearby. 

° Speak directly to the patient about simple things and reassure him or her 
frequently. 
° Explain events and noises in the sur-rounding area. Tell the patient what has 
happened and where he or she is. 
° Touch and stroke the patient gently. Tell the patient who you are each time 
you 
approach the bedside. Hold his or her hand. 

° Play favorite music for the patient or tape a soothing message that can be 
played 
when you are away from the bedside. 
° For parents of young children, tape yourself singing or reading your child's 
favorite stories. 15 
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PAGE 14 
A. THE EFFECTS OF A STROKE Because strokes can occur on either side of the 
brain, it is important to understand the uniquely different symptoms they cause. 
The 
location of the stroke determines which side of the body will be affected. A 
stroke on the left 
side of the brain causes right-sided paralysis (hemiplegia) or weakness, while 
damage to 
the right side of the brain causes left-sided paralysis or weakness. 

Some strokes may produce mild, or only temporary effects. Other strokes can 
produce 
permanent damage. The effects of a stroke depend upon which area of the brain 
has been 
damaged, which brain cells were damaged, how much damage has occurred, how 
easily 
and quickly the body repairs the blood supply system to the brain, and how 
quickly other 
areas of the brain can take over the work of the damaged brain cells. Some of 
the effects of 
stroke are global, that is, they can occur whether the stroke is on the right or 
left side of 
the body. Other effects are unique, depending upon the area of the brain that is 
damaged. 

GLOBAL E FFEC TS Memory is commonly affected following a 
stroke regardless of which side is affected. Because memory is comprised of many 
varied 
components, patients may experience different types of memory impairment. 
Attention and 
concentration skills may also be reduced along with reasoning and judgment. 
Reading may 

Because the brain is the center of operations for the body, an injury can 
affect many different areas. Some ef fects will be short-term, some may last 
longer, and some may be permanent. Some effects may appear suddenly 
and disappear just as fast; others may take a long time to come on and an 
equally long time to overcome. 

T HE EFFECTS OF A BRAIN INJURY 

pose some problem for individuals sustaining a left or right stroke; others may 
experience 
trouble writing due to motor weakness, paralysis, or poor coordination. 

Depression is a common reaction to illness or injury and should be considered 
normal after 
a stroke, if it doesn't last for a prolonged period of time. Some depression may 
be 
caused by chemical changes associated with the injury to the brain. 

Emotional changes are also common. An individual may cry easily and then begin 
laughing for no apparent reason or may be more irritable and more easily 
frustrated 
than before the stroke. 
A person's bowel and bladder functioning may also be affected following a left 
or right 
stroke. Many management techniques can be used to improve function. 

THE EFFECTS OF A LEFT STROKE The most apparent physical consequence of a 
stroke on the left side of the brain is right-sided paralysis (hemiplegia). The 
weakness 
or paralysis more often occurs to the hand and arm rather than the leg. For some 
indi-viduals, 
the hemiplegia can prevent them from moving the affected limb, while others 
may experience only a mild weakness. This may cause difficulty standing, 
walking, 
dressing, bathing, and eating. 

NOTICE: The purpose of the following information is to review certain medical 
issues. The information contained herein has been supplied as a courtesy from 
Bryn 
Mawr Rehab, Malvern, PA, and thus shall not be reproduced nor be construed as 
medical advice or opinion and is not intended as medical advice or opinion. 16 
16 Page 17 18 
PAGE 15 
Speech and language problems are also com-mon among individuals who have 
sustained a 
left stroke. There may be difficulty in both speaking and understanding. In some 
cases, 
the muscles in the face, neck, mouth, and throat also become weakened or 
paralyzed causing 
slow, labored slurred speech and an abnormal vocal quality. 

Other consequences of a left stroke are diffi-culty swallowing or inability to 
swallow 
(dysphagia) and vision problems such as double vision or a partial blindness 
affecting 
only half the field of vision in each eye. An individual's behavior may also 
become slow, or 
appear hesitant when solving problems. 
THE EFFECTS OF A RIGHT STROKE A stroke on the right side of the brain may 
cause paralysis or weakness on the left side of the body. A person who has 
suffered a right 
stroke may display some degree of muscle weakness and dysphagia, vision 
deficits, 
memory, attention and concentration deficits. However, they frequently have 
adequate 
communication abilities. 

Persons who suffer right strokes often have difficulty judging distance, size, 
position, rate 
of movement, form and how parts are related to wholes. 

One-sided neglect, that is, ignoring a weak or paralyzed body part may also 
develop with a 
right side stroke. Individuals with one-sided neglect may not even recognize 
that a body 
part is theirs. 
Right strokes can also cause an individual to have problems understanding body 
language. 
A patient may not be able to interpret informa-tion from tone of voice, body 
movements, or 
facial expressions. 
While persons with left strokes are slow and cautious, persons with right 
strokes tend to be 
impulsive and quick when completing activi-ties. They are often unaware of their 
deficits 
and are unrealistic about their abilities. Some individuals may try to complete 
activities they 
cannot perform safely. 

RIGHT STROKE 
Weak or paralyzed left side 

Neglect of weak or paralyzed body part 
Difficulty judging distance, size, 
position, form, and rate of 
movement 
Poor judgment and reasoning 

Memory, attention, and concentration deficits 
Behavior: quick and impulsive 

LEFT STROKE 
Paralyzed or weak right side 

Speech-language deficits and/ or 
swallowing disorders 

Memory, attention, and concentration 
deficits 
Poor judgment and reasoning 

Behavior: slow, hesitant, 
disorganized 17 
17 Page 18 19 
PAGE 16 
B. MEDICAL AND RELATED PHYSICAL EFFECTS OF A 
TRAUMATIC BRAIN INJURY Many potential deficits are noted in the follow-ing 
4 sections. But as you read through, remem-ber that only some may apply to your 
family 
member. As noted earlier, each person with a brain injury has had a unique 
injury and will 
experience a unique recovery process. 
PROBLEMS WITH NUTRITION AND EATING Physical and cognitive changes such as 
dimin-ished 
attention, poor hand coordination, and difficulty in swallowing, can disrupt 
normal 
eating habits. Proper nutrition is essential to healing, however, so evaluations 
can be per-formed 
to determine the best means for a patient to maintain adequate nutrition. 
Retrain-ing 
efforts through nursing, occupational therapy, and speech therapy can help a 
person 
recover eating abilities. 
Dysphagia is the term that described swallowing disorders. A swallowing disorder 


can occur at various points along the food's pathway to the stomach. It is 
important to 
recognize that placing food into someone's mouth and having it disappear without 

outward signs of choking does not assure that the food has been swallowed 
safely. In a 
significant number of patients, particularly if they are just emerging from coma 
or show 
confusion, food can enter the trachea (wind-pipe) and proceed to the lungs, 
where it can 
cause pneumonia to develop. 
A speech/ language pathologist conducts an evaluation to determine a person's 
level of 

safety in swallowing. This evaluation can be enhanced with a special x-ray 
study, called a 
video fluoroscopic swallowing study, which can help assess under what conditions 
swal-lowing 
may be safe and can offer direction for swallowing therapy. Evaluations and 
studies 
also will indicate if a feeding tube is necessary. 
Many people are able to eat only under certain conditions. For example, they may 
tolerate 

small amounts of a selected food consistency (a soft diet, for example) in a 
carefully controlled 
therapy setting but may be at significant risk if fed under even slightly 
different conditions. 
Such patients may require tube feedings to maintain or supplement adequate 
nutrition. 

The feeding tube will maintain proper nutrition until a patient is able to 
swallow properly 
again. Several feeding tubes are common: the nasogastric (NG) tube, which does 
not require 
a surgical procedure for use and is passed through the patient's nose and into 
the stom-ach; 
the jejunostomy (J) tube, which is surgi-cally inserted directly into the small 
intestine, 
and the gastrostomy (G) tube, which is inserted directly into the stomach. 

FEVER If fever occurs, blood and urine tests and x-rays 
may be needed to help find the cause. Fevers are most often caused by urinary 
tract infection 
or pneumonia and these can be treated with antibiotics. 

FRACTURES Many people who sustain traumatic brain 
injury also sustain fractures. Rehabilitative care can assist in recovery from 
effects of these 
injuries and orthopedic care can continue in the rehabilitation setting. 

HETEROTOPIC OSSIFICATION Many patients with severe brain injury develop 
bone in the soft tissue around their joints — usually shoulders, elbows, knees, 
and hips. 
This formation, called heterotopic ossification, can cause pain and diminish the 
range of 
motion in the affected joints. Range of motion therapy can help to alleviate the 
problem and 
may be used in conjunction with medication. In more severe cases, surgery may be 
necessary 
over the long term. 

HYDROCEPHALUS Cerebrospinal fluid (CSF) acts to cushion and 
protect the brain and spinal cord from physical impact. CSF flows through a 
series of pathways 
around the brain. 
The amount of CSF in the skull must be main-tained at a relatively constant 
volume for the 
brain to function normally. Hydrocephalus is a condition in which the production 
of CSF 
exceeds its absorption and results in enlarge-ment of cerebral ventricles. 
Hydrocephalus can 
be caused by abnormalities in production or reabsorption of CSF or by 
obstruction of the 
circulation of the fluid. 18 
18 Page 19 20 
PAGE 17 
Hydrocephalus may be suspected if a person begins to deteriorate in mental or 
physical 
functioning or suddenly develops incontinence (i. e., cannot control urination). 
CT scans and 
sometimes additional tests may be required to establish the diagnosis. In some 
cases, a small 
catheter or shunt may be required to drain excess fluid from the brain. 

INCONTINENCE OF BOWEL AND B LADDER The inability to control bowel and bladder 
functions is common to people recovering from a brain injury. Many management 
techniques can be used to improve function. For example, laxatives and 
suppositories can 
help regulate the emptying of the bowel. Taking the person to the bathroom at 
sched-uled 
times (time voiding) and using catheters and external collecting devices can 
improve 
bladder management. Both functions also may be improved by changes in diet. 

PROBLEMS OF INACTIVIT Y The long period of inactivity that may be part 
of recovering from a brain injury can cause certain physical problems. General 
decondi-tioning 
is the generally decreased strength and stamina that a person may experience as 
a 
result of extended bed rest. Individual exercise programs can help restore lost 
muscle strength 
and physical endurance. Skin problems such as pressure ulcers can develop after 
lying in 
one position for a long time. The best preven-tion is frequent inspection of the 
skin and 
shifting and repositioning. Blood clots, called deep vein thrombosis (DVT), may 
develop 
especially in the legs when patients have limited mobility. Though the clots are 
not 
always apparent, they may be accompanied by pain, warmth, and swelling. An 
additional risk 
is for a clot in the leg to break off and enter the lung (called a pulmonary 
embolus). Anti-coagulant 
medications frequently are pre-scribed to manage these conditions. In some 
patients who may not tolerate anti-coagulants, a filter is sometimes placed in a 
large vein to 
prevent clots from going to the lungs. 
SEIZURES Seizures are common complications in people 
with traumatic brain injury. The symptoms of a seizure can range from 
generalized shaking 

and loss of consciousness, to a discrete episode of altered attention, emotion, 
sensation, 
or movement. 
Seizures are caused by an abnormal electrical discharge by brain cells. The risk 
of seizures is 
greater with prolonged unconsciousness, depressed skull fracture, or 
intracranial hemor-rhage. 
Seizures can be subdivided into early (one to two weeks after injury), and late 
post-traumatic 
seizures. Patients with late seizures are generally treated with anti-convulsant 

medication for a period of years. Patients without late seizures, but at high 
risk, are 
sometimes treated with anti-convulsants for briefer intervals. 

SENSORIMOTOR E FFECTS This term refers to the relationship between 
movement and sensory perceptions. The brain interprets information sent by the 
senses, and 
directs physical movement according to the needs expressed by this information. 
Any of 
several movement disorders can result if a brain injury interrupts the smooth 
operation of 
this process. 
Different types and levels of paralysis can affect different parts of the body 
and last for 
unpredictable periods of time. Hemiparesis is weakness on one side of the body; 
when 
this weakness is more severe, it is called hemiplegia. 

Motor control in general can decrease because the injury has affected the way 
the brain directs 
the muscles to move. This can result in com-plete or partial interruption of 
certain move-ments, 
uncontrollable spasms, and/ or a gen-eral inability to control movements. 
Another 
common deficit in motor controls is apraxia, the inability to carry out 
purposeful move-ments. 
For example, a person may have the ability to lift an arm, but can only do it 
sponta-neously, 
not upon request. The instructions cannot be willfully communicated from 
the brain. 
A person's balance and coordination also may be affected by a brain injury. 
Balance depends 
upon vision, hearing, and position sense information reaching the brain and 
being 19 
19 Page 20 21 
PAGE 18 
properly analyzed there. Any interruption in these connections can disrupt 
balance. Poor 
coordination can be caused by injury to the cerebellum or portions of the inner 
ear and 
their connections to the brain. Called ataxia, this condition can interfere with 
the perfor-mance 
of even the most basic movements and tasks. 

PROBLEM WITH MUSCLE TONE AND 
RANGE OF MOTION Muscle tone is frequently abnormal after a 

brain injury. Sometimes muscle tenseness may increase with movement. This is 
called spastic-ity. 
These changes in muscle tone can be painful and can lead to decreased range of 
movement and abnormal posture. For example, the arms may be held tightly across 
the chest and the legs may be held in a straight, rigid position. 

Treatment for abnormal muscle tone includes exercises to normalize the tone, 
gain posture 
control and improve flexibility. These may include slow rocking, range-of-motion 
exer-cises, 
balance training, and serial casting (the application of casts to prevent 
deformity and 
gradually increase range of motion). Anti-spasticity medication, selected nerve 
block 
injections, and selected muscle injections may also be used. Orthopedic or 
neurosurgical 
procedures may be required in severe or chronic situations. 

DYSARTHRIA This term describes any of a variety of speech 
difficulties caused by muscle weakness or paralysis. The problem could be 
located any-where 
in the mechanism of speech production: the muscles of the mouth, the passageway 
between nose and mouth, the voice box (larynx), or the respiratory system. 
Dysarthria 
causes slurred speech and an abnormal voice quality. 

VISUAL DEFICITS Vision can be impaired in one eye, in both eyes, 
or on one side of the visual field (called visual field cut or hemianopsia). 
Diplopia, or double 
vision, is also common after brain injury and is usually due to nerve damage. An 
eye patch 
often relieves initial discomfort and improve-

ment usually occurs over several months. If symptoms persist, prism lenses or 
eye muscle 
surgery may be considered. Vision therapy may also be considered. 

Often, people have visual-spatial difficulty that is not due to nerve damage. 
This is called 
visual perceptual deficit and is caused when the brain has difficulty 
interpreting what is 
seen. These problems include unilaterals neglect, in which a person neglects 
items 
located on one side or ignores one side of the body, decreased depth perception, 
difficulty in 
perceiving how far away something is, and diminished object recognition. 

OTHER PERCEPTUAL DEFICITS Because sensory information is processed in the 
brain, any of the other senses of hearing, taste, smell, and touch may also be 
affected by a 
brain injury. The abilities to taste and smell are often diminished and must be 
compensated for. 
Hearing itself or the quality of what is heard (auditory acuity) may diminish. 
Certain 
sensitivities may be heightened, including sensitivity to touch (tactile 
defensiveness) and 
to movement (vestibular deficit). Even the perception of one's own limbs, their 
connection 
to the body and their relationship to the envi-ronment may be impaired 
(proprioceptive 
disorder). 

C. BEHAVIORAL EFFECTS OF A TRAUMATIC BRAIN I NJURY 
Two of the most striking problems many people with brain injury experience are a 
lack 
of insight about their condition and denial about their condition. These 
problems can 
range from complete denial of obviously severe physical impairments to 
underplaying the 
extent of cognitive deficits. As a result, patients often do not take their 
limitations into account 
when planning future activities. Family mem-bers and rehabilitation staff need 
to have a 
realistic appraisal of the patient's strengths and weaknesses so they can 
provide guidance for 
planning and problem solving. 20 
20 Page 21 22 
D. COGNITIVE EFFECTS OF A TRAUMATIC BRAIN INJURY 
ATTENTION AND CONCENTRATION Patients in early recovery often can remain 
completely alert for only a brief period. Later, it may be difficult for them to 
focus their atten-tion 
entirely or to stay with one project or conversation for a significant period 
without 
becoming distracted. Patients can be distracted by their own emotions, thoughts, 
and physical 
responses or by any element in their environ-ment, such as voices, music, 
noises, or sudden 
changes in the room. A related concern is an inability to turn one's attention 
from one 
subject to the next. 
MEMORY Memory impairment, or amnesia, is common 

after traumatic brain injury. There can still be islands of preserved memory 
during post-traumatic 
amnesia, but during this time there is usually a limited attention span. Precise 
assess-ment 
of how much actual memory loss has occurred is difficult. Patients in a confused 
state 
often will not remember things because of their severely impaired attention, but 
they may 
exhibit good memory function once their attention improves. The duration of the 
period 
of post-traumatic amnesia often indicates injury severity. 

Every person has different types of memory, and one aspect of memory can be 
affected 
differently than another. Memory of things seen (visual memory) differs from 
memory of things 
heard (auditory memory), and a strength in one area can be used in therapy to 
help im-prove 
functional memory. 
Short-term memory is the ability to recall things occurring within a few seconds 
to a day. 

Long-term memory is the ability to recall things occurring within a longer 
period of 
weeks and months, and remote memory is the ability to recall events that 
occurred many 
years ago. 
Often, remote memory begins to return before short-term or long-term memory. 
Functionally 

speaking, it is the ongoing ability to make new, day-to-day memories that is 
important. Many 
patients with severe memory difficulty can recall events from years ago, but 
cannot re-member 
if they had breakfast that day. 

People who are confused or who misinterpret events and statements often may 
offer re-sponses 
that appear made up. This behavior is a condition called confabulation. The 
person is 
trying to respond as well as possible to a statement or a situation that may not 
make any 
sense and is calling upon different and often unrelated memories to create their 
response. 

It also is important to realize that a person may learn something new and 
remember it, but not 
remember the experience of learning it. Re-search has indicated that some people 
with 
brain injury learn information or motor skills taught in a therapy session even 
though they 
may not remember the session itself. 
COMMUNICATION A brain injury can greatly diminish a person's 
ability to understand language and communi-cate thoughts in return. Language 
processing 
may be impaired and, early in recovery, a person may have little or no 
understanding of 
words. This can be followed by a period in which some words or commands are 
known 
and not others, or some words may be known at one time and not at another. Later 
in recov-ery, 
a patient may not understand complicated statements and may need to interpret a 
state-ment 
before responding. 
Aphasia is another type of communication problem in which a person can no longer 

connect the correct word with a particular object or find the words to express a 
particular 
thought. People who have difficulty under-standing have receptive aphasia; those 
with 
difficulty saying/ producing speech have expressive aphasia. Often, a person may 

experience both. 
A similar problem is paraphasia, in which the individual will substitute an 
incorrect word 
that may sound like the desired word or relate to its meaning in some way. 

People may be able to speak or write correctly, but it is either off the point 
entirely or becomes 
irrelevant as it moves further off the point. This is called tangential 
communication. 

Perseveration, when a person repeats a verbal or physical response 
inappropriately, is 
also common. 
PAGE 19 21 
21 Page 22 23 
PAGE 20 
W HO WILL HELP AFTER BRAIN INJURY? Members of the health care team will work 
together with the patient, family, and friends during the hospital stay. Care 
will be centered on the individual needs of the patient. Family and friends are 
important members of the team. 
PATIENT: The patient is the most important member of 
the team. Care will be planned based on how the patient responds to treatment. 

FAMILY AND FRIENDS: You provide emotional support to the 
patient. Family and friends also provide the health care team with important 
facts about 
the patient's past history and can help watch for changes. Other team members 
will also 
teach you activities that you can do to help with the recovery process. The 
importance 
of family and friends to a person's recovery 

cannot be over-emphasized. 
DOCTORS: Neurosurgery doctors are specialists that help 
determine the type of brain injury and its treatment. They may perform surgery 
on the 
brain. They will work with other doctors if the patient is in intensive care or 
has injuries to 
other parts of the body. 
NURSES: Nurses check patient's vitals (temperature, 
blood pressure, heart and breathing rate) and watch for changes in strength and 
thinking. 

Team Members 
DOCTORS 
NURSES 
FAMILY AND FRIENDS 

PHYSICAL THERAPISTS 

OCCUPATIONAL THERAPISTS 
SOCIAL WORKERS DOCTORS 

PATIENT 
SPEECH PATHOLOGISTS 

NEURO PSYCHOLOGISTS 

DIETICIANS & OTHER STAFF 

NOTICE: This section of the document is copyrighted by the University of Iowa 
and Karen Stenger, R. N., M. A. The Virtual Hospital is a registered trademark 
of the 
University of Iowa. The original copy of this document is maintained on the 
Virtual Hospital (http:// www. vh. org). Please refer to it for the most 
up-to-date version of 
the document. 22 
22 Page 23 24 
PAGE 21 
They help with daily cares such as eating and bathing. Nurses also coordinate 
care among the 
members of the health care team. 
SOCIAL WORKERS: Social workers provide emotional support to 
help the patient and family adjust to being in the hospital. They coordinate 
discharge plan-ning, 
referral to community resources, and deal with questions related to insurance or 

disability. 
PHYSICAL THERAPISTS (PT): Physical therapists evaluate and treat weak-nesses 
in the patient's strength, flexibility, balance, rolling, sitting, standing and 
walking. 
Treatment may include exercises or instruction in use of equipment such as 
walkers, canes, or 
wheelchairs. 
OCCUPATIONAL THERAPISTS (OT): Occupational therapists evaluate the patient's 
ability to perform dressing, bathing, homemak-ing and activities that require 
memory and 
organization. They provide treatment or equipment needed for safe independent 
living. 

SPEECH PATHOLOGISTS: Speech therapists test and treat speech, lan-guage, 
thinking and swallowing problems. 
NEUROPSYCHOLOGISTS: Neuropsychologists test thinking, memory, 
judgment, emotions, behavior and personality. This information can be used to 
help guide 
treatment. It will also help determine the amount of supervision that the 
patient needs 
when they leave the hospital. 

DIETICIANS: Dieticians assess nutritional needs. They work 
with the patient and other team members to help the patient meet their 
nutritional goals. 

RESPIRATORY THERAPISTS: Respiratory therapists assess the patient's 
respiratory care, status, and treatment progress. 
Services provided include: ° oxygen therapy 

° aerosol medication therapy ° ventilator management 
° pulmonary diagnostic procedures 
In addition, respiratory therapists provide education to patients, family 
members, and 

hospital personnel and act as a resource to the medical staff for research and 
consultation. 

OTHERS: There are many other staff members that may 
work with brain injured patients and family. 
These include: ° Clergy 

° Activities Therapists ° Patient Representatives 
° Child Life Therapists ° Music Therapists 
° Vision Therapists ° Vocational Rehabilitation 23 
23 Page 24 25 
PAGE 22 
H OW WILL YOU REACT? When a friend or family member is hospitalized, it is 
normal to have many emotional reactions. You may have these emotions at 
different times. The emotions you may experience include: 
PANIC AND FEAR One of the first reactions you may have after 
a family member suffers a brain injury is panic and fear. Fears are intense 
because 
you are worried the patient may not sur-vive. Until the patient becomes 
medically 
stable, physical and emotional feelings of panic may continue. Some of your 
physical 
symptoms may be rapid breathing, inability to sleep, decreased appetite and 
upset 
stomach. Some people may cry uncontrollably. 

SHOCK AND DENIAL You may feel that what is happening is not 
real. You may notice things going on around you, but have trouble remembering 
infor-mation 
and conversations or meetings with others. You may also have a hard time 
understanding the seriousness of the injury that has occurred. 

ANGER Many people feel angry that they or their 
loved ones are in this situation. This may be justified. You may be angry with 
the patient 
for putting themselves in a situation where they could be hurt. You may also be 
angry 
with family members, friends, or others involved in the accident. You may be 
upset 
with the health care team for not doing or saying what you think is right. This 
is a 
normal reaction and it is okay to have these feelings. 

GUILT Guilt is a very normal reaction during this 
time. You may feel you could have done something to prevent the accident from 
hap-pening, 
even when this is far from true. You may also think about past events and 
personal 
experiences with the patient that you wish could have been different or better. 
If you are 
feeling angry with the patient, you may also feel guilty about your anger. This 
too is a 
normal reaction. We encourage you to talk about your feelings with someone close 
to you 
or a professional staff member. 
ISOLATION During this time you may feel distant from 
others. You may have a hard time relating to others in this abnormal situation. 
You may 
think that others will not understand. You may also think others are scared or 
disapprove of 
your feelings, and as a result isolate yourself. However, a crisis such as a 
brain injury is a 
time where it is helpful to accept comfort, support and assistance from others. 

HOPE As the patient begins to stabilize, anxiety about 
survival will be combined with hope of recov-ery. Medical complications and slow 
recovery 
may increase anxiety. However, hope may be brought about by the smallest 
changes. 

NOTICE: This section of the document is copyrighted by the University of Iowa 
and Karen Stenger, R. N., M. A. The Virtual Hospital is a registered trademark 
of the 
University of Iowa. The original copy of this document is maintained on the 
Virtual Hospital (http:// www. vh. org). Please refer to it for the most 
up-to-date version of 
the document. 24 
24 Page 25 26 
PAGE 23 
Brain injury is a family matter and it affects families in many different ways. 
Families can 
undergo many changes as their loved one progresses through recovery. During the 
initial crisis period, there may have been no time to focus on anything other 
than the 
injured relative's life and problems— yet the health of each family member is 
important to 
the overall health of the family. Parents, spouses, children, and siblings can 
all go 
through difficult reactions unique to their relationship to the injured person. 
If a family 
balance is not restored that considers each person's needs, family members can 
experi-ence 
isolation, poor health, prolonged fear, and depression. 

Each family has its own style of expressing feelings, dividing chores, and 
solving prob-lems. 
All of this may change when a family member acquires a serious disability, 
particu-larly 
a brain injury. It is common that in addition to feeling sad about the loved 
one's injury, family members feel a sense of loss for how the family itself has 
been 
altered. Family members may relate differ-ently to one another and have 
different 
demands put on them. 
An especially painful change involved family roles. Families operate like a 
small organiza-tion, 
providing food, shelter, comfort, sup-port, and love. Different people in the 
family 
organization have different roles to play, and 

You most likely will have gone through a tremendously dif ficult period 
marked by sadness, anxiety, fear, confusion, and frustration or anger. A 
brain injury to one family member can be devastating to the family as a 
whole. And while the person who was injured is the actual patient, the 
entire family needs both support and information during this dif ficult 
adjustment period. 

F AMILY ISSUES: COPING WITH RECOVERY 

those roles go beyond just the prescribed definitions of mother and father, son 
and 
daughter. For example, the roles can include who listens to emotional problems, 
who sends 
out the holiday cards, who takes care of the house repairs. If one family member 
becomes 
unavailable due to an injury, the entire system usually changes. People 
naturally pitch in and 
help during a crisis, taking on new and addi-tional roles. There can be 
increased stress on 
family members as they do things they never thought they would or could do. But 
once a 
family member has a disability, pitching in temporarily usually leads to a 
permanent shift 
in responsibilities. Often, people have emo-tional reactions to such permanent 
role changes 
that include resistance, sadness, and even guilt at replacing a loved one in a 
particular func-tion. 
There are two essential elements for coping with the shifts in roles: openly 
express-ing 
feelings and enlisting support. 
First, family members need to discuss the feelings they have about everything 
that has 
happened. For example, they may feel sadness and anger about the accident or 
illness itself 
and similar feelings about the changes the event has necessitated. Whatever the 
exact 
feelings are— there are no right and wrong ones— expressing them openly and 
directly is 
extremely important. 
Second, the family needs to rally whatever resources it can to deal with strong 
feelings and 

NOTICE: The purpose of the following information is to review certain medical 
issues. The information contained herein has been supplied as a courtesy from 
Bryn 
Mawr Rehab, Malvern, PA, and thus shall not be reproduced nor be construed as 
medical advice or opinion and is not intended as medical advice or opinion. 25 
25 Page 26 27 
PAGE 24 
increased demands. The recovery process can be long and stressful. Family 
members need to 
assemble a support system of friends and relatives that will help relieve the 
tension that 
naturally builds. 
Many times families don't want to ask for help. They don't want to impose on 
others or they 
are embarrassed to be in a needy position. Some people may think, too, that if 
they must 
ask for help, then the situation must be very serious. It is important to 
remember when 
these feelings arise that social support can be drawn from many people and many 
types of 
organizations. Extended family, neighbors, and members of your religious 
community often 
are waiting to be asked for help. In addition, support is available from 
institutions and 
community groups through hospital staff members, psychologists, and established 
support groups. 
Every family will react differently to the crisis and will find its own means of 
coping. You are 
encouraged to use your intuition, participate fully in the rehab program, make 
suggestions, 
and ask questions. The more information you have about your family member's 
recovery, the 
better able you will be to handle the changes that can arise during the process. 


The hope is that individuals who have experienced a brain injury or stroke will 
return 
home as independent as possible, with the help of the people who love them. In 
this way, 
families can be the most important part of the treatment team, as they will 
often continue the 
care of the recovering person at home. We've compiled the following list of 
suggestions for 
you to consider. 

A. INTERACTING WITH THE INJURED PERSON 
° The personality changes that can accom-pany a brain injury or stroke may be 
more 
difficult to cope with than any physical disability. If your family member 
behaves 
inappropriately, or in an unfamiliar way, it may be the result of his or her 
injury. You 
need not feel embarrassed about behavior that naturally occurs during the 
recovery 
process. 

° Information may need to be presented to your injured family member as simply 
as 
possible. Use straightforward language and direct, uncomplicated gestures and 
expressions. 
° Your family member's emotional reactions may not be what you would normally 
expect. They may be heightened or they may be absent. Often the types of 
reactions 
displayed may be best explained by the nature of the injury and the stage of 
recovery at which your loved one may be currently functioning. (See page 10 for 
the 
Rancho Scale). 
° A person recovering from a brain injury or stroke sometimes has little 
capacity to fully 
grasp the extent of his or her deficits. Do not assume that your family member 
feels 
as you would if you were in his or her situation. Individuals are often unaware 
of 
their problems and are not depressed when we would expect them to be. The only 
way 
to know how they feel is to ask them. Even behaviors such as laughing or crying 
do not 
necessarily mean that the patient is happy or sad. Their behavior can be 
disconnected 
from their feelings. As your family member improves, however, so does his or her 

insight into losses or changes. This is the time when he or she will most need 
your 
support and the help of the team. 
° People recovering from brain injury or stroke often have a diminished capacity 
for empa-thy. 
They are often incapable of seeing any point of view other than their own. Be 
aware 
that your family member may not seem as mature as he or she once was, but 
respond-ing 
to him or her as one adult to another is still important. 

° Try to be objective about your family member's capabilities. Patients often 
deny 
their disabilities and try to influence your point of view about them. You can 
make 
your assessments based on the information that you have. 26 
26 Page 27 28 
PAGE 25 
° Your family member will benefit from structure. Help him or her work through 
problems by providing input likely to lead in the right direction. 

° Your efforts may not always result in imme-diate improvement. You can feel 
discour-aged 
and even guilty as a result. It is impor-tant then, and at all times, to keep 
your sense 
of hope. While it is vital to remain realistic in your goals, you do not need to 
give up on 
future possibilities. 

B. GENERAL GOALS ° Take care of yourself and your family — not 
just your injured relative. It will not help him or her if you become exhausted. 
Do not be 
concerned that asking staff members for help for yourself will limit our 
attention to your 
relative. 
° Pace yourself. This process can be a long one. Do not expend all of your 
energy in the 
early stages because you will need it in the months ahead. 

° Remember that dealing with a brain injury or stroke is difficult and no one 
has all the 
answers. Common sense, however, will carry you a long way. Counseling can also 
help and can be found through your reli-gious institution or through 
psychologists, 
psychiatrists, and social workers. 
° Participate in your family member's reha-bilitation program to gain a better 
under-standing 
of the processes and effects of a brain injury or stroke. 

° Write important info down in a journal or notebook. Keep records and info 
together in 
a file for easy reference. 
° Remember that every person is unique and so an injury to the brain will have 
unique 
effects. Try not to compare your family 

member's progress to that of others in the rehabilitation program. The treatment 
team 
individualizes the care for each person, so your family member is receiving the 
most 
appropriate treatment. One therapist recom-mended, 'Don't look back one day and 
compare your loved one's accomplishments; look back one week and you will really 
see a 
difference. ' 
° Acknowledge all of your feelings. You may not understand why you feel as you 
do at 
certain times, but it is important to recognize even those that seem odd or 
unreasonable. 
Sharing them with other relatives and friends may also provide some relief; they 

may be feeling the same way. 
° Holding a family get-together, particularly one with dependent children, can 
be very 
difficult. Try to appraise the situation as honestly as possible. If you are 
under stress, 
turn to professionals for help. 
° Try to maintain your normal contacts. Stay in touch with relatives and friends 
and make 
plans to do recreational activities outside of the hospital. Such outings will 
help to keep 
you connected to the community. 
° Maintain a sense of humor. A sense of humor has a healing influence. Once a 
patient's 
condition stabilizes and improves, family members find their ability to laugh 
returns. 
They find that laughter helps them as well as the patient. 

° Every person in coma will react in a unique way. Some persons with a coma 
experience 
complete recovery and others do not. Al-ways be hopeful that your loved one will 

come out of their coma. 
° Join a brain injury support group. Contact the Brain Injury Association of DE 
at 
1-800-411-0505 for dates and locations. 27 
27 Page 28 29 
PAGE 26 
H OW CAN YOU HELP WITH RECOVERY? The family and friends of a person with a brain 
injury are important members of the team. Friends of those with brain injuries 
may find it uncomfortable to visit when the patient is confused or agitated. 
Honest explanations from family members may help them continue 
to offer the attention and support that is so helpful to patients. Sharing this 
guide is another way to help them understand. The 
following is a list of suggestions that correspond with the stages of recovery. 

UNRESPONSIVE STAGE At this stage the patient appears to be in a 
deep sleep and does not respond to their surroundings. The goal is to obtain a 
re-sponse 
from various senses (hearing, smell, sight, touch). 

° When speaking to the patient assume they understand what you are saying. 
Speak in a comforting, positive and familiar way. 

° Speak clearly and slowly about familiar people and memories. 
° When visitors are present, focus on the patient. Keep the number of visitors 
to 1 or 
2 people at a time. Visits should be short. Other distractions (TV, radio) 
should be 
turned off when visiting. 
° Provide the patient with pictures and personal items that are comforting and 
familiar to them (use poster/ bulletin board). 

° The nurses and therapists may encourage you to assist in care of the patient. 
This 

includes: grooming, hair care, shaving, applying skin lotion, gently stretching 
and 
positioning patient's arms and legs. If you don't feel comfortable with these 
activities, 
that is okay. The staff will understand. 
EARLY R ESPONSES At this stage the patient is beginning to re-spond 
to people and hospital surroundings. The responses may range from turning toward 

a familiar voice to moving an arm or leg at the staff's request. The goal is to 
increase the 
consistency of responses. 
° There may be a delayed response time when asking the patient to move, speak, 
or pay 
attention. Always wait 1-2 minutes for the requested response. Repeat your 
request 
only a couple of times during this time period. 

° Be aware that the patient's attention span may only be 5-10 minutes before 
fatigue and 
frustration set in. 
° Allow for rest periods. Turn off the TV, music, and lights, and limit 
visitors. The 
patient can become stressed by too much noise, light or stimulation. 

NOTICE: This section of the document is copyrighted by the University of Iowa 
and Karen Stenger, R. N., M. A. The Virtual Hospital is a registered trademark 
of the 
University of Iowa. The original copy of this document is maintained on the 
Virtual Hospital (http:// www. vh. org). Please refer to it for the most 
up-to-date version of 
the document. 28 
28 Page 29 30 
PAGE 27 
° Continue with suggestions listed in the unresponsive section. 
AGITATED AND CONFUSED RESPONSES During this stage, things are confusing. The 
patient may begin to remember past events but may be unsure of surroundings and 
the reason 
for hospitalization. The goal is to help the patient become oriented and to 
continue to 
treat their physical needs. 
° Provide one activity at a time and expect the patient to pay attention for 
only short 
periods. Keeping the noise level low helps the patient focus. 

° The patient may repeat a word, phrase, or activity over and over. Try to 
interest the 
patient in a different activity. 
° Socially unacceptable behavior may occur at this level. This is common. Calmly 
tell the 
patient the behavior is not appropriate. 
° Provide visual as well as verbal information about the patient's surroundings 
to assist 
with orientation. Remembering information from one time to another is difficult. 
It may 
be helpful to provide cues for the patient such as: 
-A calendar with the days marked off -A sign in the room telling them where 
they are -Post a schedule with meal times, 
therapies, and special appointments 

° Allow the patient to move about with supervision to decrease frustration. 
HIGHER LEVEL RESPONSES At this stage patients are able to take part in 
their daily routine with help for problem solving, making judgments, and 
decisions. 
Most of the suggestions from the previous stage continue to apply here. The goal 
is to 
decrease the amount of supervision needed and increase independence. Here are a 
few 
additional suggestions for this stage. 
° Assist with making the environment safe. Safety decisions may still be 
difficult for the 
patient to make. 
° Discuss with the patient decisions that he or she makes. Provide praise for 
safe decisions 
and a calm explanation for unsafe decisions. Learning is still difficult. 

° Encourage the use of a memory and date book to help with appointments and 
daily routines. 
° Encourage brief rest periods because the patient will continue to need more 
rest. 

° Check with the health care team on activities that may be completed with or 
without 
supervision. These activities may include work or school re-entry, taking 
medications, 
driving, or managing money. 29 
29 Page 30 31 
PAGE 28 
Reprinted with permission from The Brain Injury Assn., Inc. website at www. bia. 
org 

T REATMENT AND REHABILITATION 
MODELS OF REHABILITATION In the past, rehabilitation services for people 
with brain injury were largely provided in a "medical model," located in a 
medical 
facility with a cadre of physicians, nurses, and trained professionals providing 
ser-vices. 
While this model still predominates, the trend today is toward more 
community-based 
rehabilitation models, and more options are available than ever before. 
Rehabilitation service delivery and funding are changing rapidly as managed care 

continues to replace the traditional fee-for-service and indemnity insurance 
plans. 

MEDICALLY BASED REHABILITATION: ° Early intervention is crucial. Rehabilita-

tion should ideally start in the Intensive Care Unit. At this point, 
rehabilitation is generally 
preventive in nature. Range of motion, bowel and bladder hygiene (i. e. 
initiation of 
regular bowel program and removing indwelling catheters), prevention of pressure 

sores, and orientation are all very important, right from the beginning. 
Frequently, reha-bilitation 
activities initiated in the ICU can reduce complications and sometimes, the 
length of hospitalization. 
° Acute Rehabilitation: Once a person is medically stable, transfer to an acute 
reha-bilitation 
facility often occurs. There, he or she will spend several hours a day in a 
structured rehabilitation program. This program usually includes a team of 
profes-

WHAT IS THE REHABILITATION PROCESS? 1. The goal of rehabilitation is to help 
people regain the most independent level 
of functioning possible. 
2. The rehabilitation process is different for everyone. Rehabilitation programs 
should be individualized, catering to each person's unique needs. Just as no 
two people are exactly alike, no two brain injuries are exactly alike. The 
person with a brain injury and his or her family should always be the most 
important members of the treatment team. Cultural, religious, social and 
economic backgrounds must always be taken into consideration when plan-ning 
a person's rehabilitation program. 
3. Rehabilitation channels the body's natural healing abilities and the brain's 
relearning processes so that an individual recovers as quickly and effi-ciently 
as possible. Rehabilitation also involves learning new ways to compensate for 
abilities that have permanently changed due to brain injury. 
There is much that is still unknown about the brain and brain injury 
reha-bilitation. Treatment methods and technology are rapidly advancing as 
knowledge of the brain and it's functions increases. 30 
30 Page 31 32 
PAGE 29 
sionals with training and experience in brain injury rehabilitation. Additional 
staff sup-port 
the brain injury rehabilitation team's efforts, and often includes respiratory 
therapy, pharmacy, lab, nuclear medicine and radiology and even housekeeping, 
dietary and central supply. 
° "Subacute" Rehabilitation: People who are minimally aroused for a prolonged 
period 
often have limited attention and stamina, and need a less intensive level of 
rehabilita-tion 
services, over a longer period of time. Subacute rehabilitation may be provided 
in a 
variety of settings, but is often in a skilled nursing facility or nursing home. 
It is impor-tant 
to note that the services provided by subacute programs vary widely, as there is 

no generally accepted definition of subacute services at this time. 

° It is important to recognize that "more therapy" does not make a person 
"better", 
but that "appropriate" therapy does. Sub-acute rehabilitation programs require 
the 
same appropriately trained professionals as acute rehabilitation programs do. 
The goals 
of sub-acute rehabilitation should include minimizing morbidity, maintaining 
func-tional 
positioning, hygiene, nutrition, and medication management, as well as 
provid-ing 
support for the person with a brain injury and his or her family. Sub-acute 
rehabilitation programs may also be de-signed for persons who have made progress 

in the acute rehabilitation setting and are still progressing, but are not 
making rapid 
functional gains. 
° Day Treatment/ Day Rehab: Day rehab (sometimes called "Day Hospital") provides 

intensive rehabilitation in a structured setting during the day and allows the 
person 
with a brain injury to return home to their family at night. The treatment team 
is often 
made up of a variety of trained rehabilitation professionals. 

COMMUNITY-BASED REHABILITATION 
° Out-patient Facilities: Following acute rehabilitation or sub-acute 
rehabilitation, a 

person with a brain injury may continue to receive outpatient treatment in 
specific areas 
(i. e. ongoing speech pathology to continue to work on language and cognition, 
or 
occupational therapy to work on daily living skills, etc.). Often, this 
treatment can also be 
provided in the home by a home-health agency. 

° Home-based Rehabilitation: There are a few rehabilitation companies which 
focus on 
providing acute rehabilitation within the home, or community setting. Once 
medically 
stable, some persons with a brain injury may be able to participate in such a 
program, if 
there is such a program in their community. 
° Community Re-entry: Community re-entry programs generally focus on developing 
higher level motor and cognitive skills in order to prepare the person with a 
brain 
injury to return to independent living and potentially to work. Treatment may 
focus on 
safety in the community, interacting with others, initiation and goal setting 
and money 
management skills. Vocational evaluation and training may also be a component of 
this 
type of program. Community Re-entry programs generally run for part or all of 
the 
day, with participants returning home to sleep and be with their families. 

° Independent Living Programs: Independent Living programs provide housing for 
per-sons 
with brain injury, with the goal of regaining the ability to live as 
independently 
as possible. Usually, independent living programs will have several different 
levels, 
for people requiring more assistance, to those who are living independently and 
being monitored. In addition to physical, occupational, speech and recreation 
thera-pists, 
these programs usually have life skills technicians, who assist the person with 
a 
brain injury towards independence. 31 
31 Page 32 33 
PAGE 30 
F INANCIAL ASSISTANCE 
The following resources may offer assistance: 
Brain injury is a long term illness that continues long after hospital 
discharge. As a 
result, financial planning for short and long term care needs to begin 
immediately. 
Health insurance can pay for a few days in the hospital but funding needs to be 
identified for services after discharge. Social Security Disability or Medicaid 
may 
pay for some of the services needed. Most people have not planned ahead and will 

need to find sources of "hidden funding." 

ON ADMISSION, families should begin to take these steps: 
° Establish open communication with hospital staff, the social worker, financial 
aid 
office, discharge planner and make appointments to seek their help in finding 
"Hidden Funding." 
° Call the Claims Supervisor of their health insurance provider and ask their 
doctor's office claims managers to help. 
° Do not take "no" for an answer. Ask why, and consider appealing decisions. 
° Call state agencies for assistance. 
° Contact organizations that family, friends or co-workers belong to for help. 
° Keep track of ALL contacts, recording the date, time, name of person and 
conversation or agreements. 
° Ask a rehabilitation facility to evaluate the consumer for admission. 

SOCIAL SECURITY -provides a monthly income for eligible 
elderly and disabled individuals. Call the Social Security Administration at 
1-800-
SSA-1213, from 7 a. m. to 7 p. m., Monday through Friday. The lines are busiest 
early 
in the week and early in the month. If you have a touch tone phone, recorded 
infor-mation 
and services are available 24 hours a day, including weekends and holidays. 

SUPPLEMENTAL SECURITY INCOME (SSI) -supplements Social Security payments for 
individuals who have certain income and asset levels. SSI is administered by the 

Social Security Administration. Call 1-800-SSA-1213. 

MEDICARE -is a federal health insurance program for 
those who receive Social Security benefits. Eligible individuals include those 
who are 65 
and older, people of any age with permanent kidney failure and disabled people 
under age 
65 who have received Social Security disability benefits for at least 24 months. 

Call 1-800-SSA-1213. 
MEDICAID -provides health insurance for eligible low 
income people who are elderly, blind, or disabled as well as for certain groups 
of 
children. Services are coordinated by state government through Delaware Health 
and 
Social Services Division of Social Services. Call 1-800-372-2022 in Delaware. 32 

32 Page 33 34 
PAGE 31 
VETERANS' BENEFITS -eligible veterans and their dependents may 
receive treatment at a V. A. Medical Center. Treatment for non-service connected 
condi-tions 
may be available, based on the veteran's financial need. Call 1-800-827-1000. 

If you have life insurance and have a life threatening illness you may be able 
to use 
those funds to pay for medical or other expenses. Call the Viatical Association 
of 
America at 1-800-842-9811. 
Hill-Burton is a program through which hospitals receive construction funds from 
the 
federal government. Hospitals that receive Hill-Burton funds are required by law 
to 
provide some services to people who cannot afford to pay for their 
hospitalization. For 
more information about hospitals covered by the Hill-Burton Act, call 
1-800-638-0742. 

There are several agencies that offer lower cost prescription drugs directly 
from the 
drug manufacturer for people who qualify. These companies work with the 
patient's 
doctors. The internet address for these companies are www. needymeds. com and 
www. themedicineprogram. com. For information about The Medicine Program 
call 1-573-778-1118. 

There are private sources of funds to help you pay your medical bills. Many 
disease and 
disability related, civic, social welfare and religious organizations have funds 
available 
for at least emergency or short-term medical needs. For a list of local civic 
groups, such as 
the Jaycees, Elks, and Moose Lodges, see the Thursday's Crossroads section and 
the 
Monday's Business Journal section of the Wilmington News Journal. Sometimes, 
families 
ask their local newspapers to feature an article about their family's situation 
and ask readers to 
donate money toward the cost of a particular device or piece of equipment. Most 
requests 
will need to be made in writing and you may have to schedule an appointment to 
speak to 
the funding source. 
References books, such as Financial Aid for the Disabled and their Families, 
published by 
Reference Service Press will be available in libraries, in the grants collection 
at the Uni-versity 
of Delaware Library, and through local social service agencies. These books 
list local and national sources of possible funding. In Delaware, contact the 
Delaware 
Community Foundation at 302-571-8004 to purchase a copy of the yearly Directory 
of 
Delaware Grantmakers. 33 
33 Page 34 35 
A nursing home is one option for post-hospital care you may want to explore. 
This checklist is 
designed to help you evaluate and compare the nursing homes that you visit. It 
would be a 
good idea to make several copies of this checklist, so that you will have a new 
checklist for 
each home you visit. After you have completed checklists on all the nursing 
homes you plan 
on visiting, compare your checklists. Comparisons will be helpful in selecting 
the nursing 
homes that might be the best choice for you. Call the Division of Services for 
Aging and 
Adults with Physical Disabilities (DSAAPD) for a list of licensed nursing homes 
in Delaware at 
453-3820 or 1-800-223-9074. 

H OW TO EVALUATE A NURSING HOME 

NURSING HOME CHECKLIST PART I — BASIC INFORMATION 
Name of Nursing Home 
Address 

Phone Cultural/ Religious Affiliation (if any) 
Medicaid Certified 
............................................................................................................... 
¨ ¨ 
Medicare Certified 
................................................................................................................ 
¨ ¨ 
Admitting New 
Residents................................................................................................... 
¨ ¨ 
Convenient location 
............................................................................................................. 
¨ ¨ 
Is home capable of meeting your special care needs? 
..................................................... ¨ ¨ 

PART II — QUALITY OF LIFE 1. Are residents treated respectfully by staff at all 
times? ................................................. ¨ ¨ 
2. Are residents dressed appropriately and well-groomed? 
............................................. ¨ ¨ 
3. Does staff make an effort to meet the needs of each resident? 
...................................... ¨ ¨ 
4. Is there a variety of activities to meet the needs of individual residents? 
.................... ¨ ¨ 
5. Is the food attractive and tasty? (sample a meal if possible) 
......................................... ¨ ¨ 
6. Are resident rooms decorated with personal articles? 
.................................................. ¨ ¨ 
7. Is the home's environment homelike? 
............................................................................. ¨ 
¨ 
8. Do common areas and resident rooms contain comfortable furniture? 
...................... ¨ ¨ 
9. Does the facility have a family and residents's council? 
.............................................. ¨ ¨ 
10. Does the facility have contact with outside groups of volunteers? 
........................... ¨ ¨ 

YES NO 
YES NO 

PAGE 32 34 
34 Page 35 36 
PAGE 33 
PART III — QUALITY OF CARE 11. Does staff encourage residents to act 
independently? .................................................. ¨ ¨ 
12. Does facility staff respond quickly to calls for assistance? 
........................................... ¨ ¨ 
13. Are residents and family involved in resident care planning? 
.................................... ¨ ¨ 
14. Does the home offer appropriate therapies (physical, speech, etc.) 
............................. ¨ ¨ 
15. Does the nursing home have an arrangement with a nearby hospital? 
...................... ¨ ¨ 

PART IV — SAFETY 16. Are there enough staff to appropriately provide care to 
residents? ............................. ¨ ¨ 
17. Are there handrails in the hallways and grab bars in bathrooms? 
............................. ¨ ¨ 
18. Is the inside of the home in good repair and exits clearly marked? 
............................. ¨ ¨ 
19. Are spills and other accidents cleaned up quickly? 
...................................................... ¨ ¨ 
20. Are the hallways free of clutter and well-lighted? 
......................................................... ¨ ¨ 

PART V — OTHER CONCERNS 21. Does the home have outdoor areas (patios, etc.) for 
resident use? ............................... ¨ ¨ 
22. Does the home provide an updated list of references? 
.................................................. ¨ ¨ 
23. Are the latest survey reports and lists of resident rights posted? 
................................ ¨ ¨ 

24. (Your Concern) 
25. (Your Concern) 
Additional Comments: 

YES NO 

This checklist may be reproduced and circulated. It is designed to be used in 
concert with the Health Care Financing Administration's booklet, The Guide to 
Choosing a Nursing Home. This 
booklet can be obtained by calling (800) 638-6833. 35 
35 Page 36 37 
PAGE 34 
T BI STATISTICS AND FACTS GENERAL ° There are 2 million Traumatic Brain Injuries 
each year (One every 15 seconds). ° 500,000 of these injuries require hospital 
admission. ° Every 5 minutes someone dies from a 
head injury: ° 140,000 people each year. 
° 75,000 -100,000 in the U. S. ° Over half of the deaths occur at the 
time of the incident or within two hours of hospitalization. 
° Every 5 minutes someone becomes permanently disabled due to a head 
injury. ° 70,000 -90,000 of those who survive will 
have lifelong disabilities. ° 2,000 more will live in a persistent 
vegetative state. ° Over 50% of those who sustain a Brain 
Injury have been intoxicated at the time of injury. The cost of Traumatic Brain 
Injuries in the U. S. is over $48 Billion each year! 

CAUSES ° 51% -Motor Vehicle Accidents 
° 21% -Falls ° 12% -Assaults and Violence 
° 10% -Sports and Recreation ° 6% -Other 

SURVIVORS ° A survivor of severe brain injury faces 5 
to 10 years of intensive services and rehabilitation. 
° The costs of a severe brain injury often exceed 4 million dollars. 
° A majority of head injury survivors are under the age of 30. 
° 2/ 3 of those who survive will live a normal life span, but will require life 
long services such as vocational rehabili-tation and physical therapy. 

INJURY ° A person does not need to be knocked out 
or lose consciousness to have sustained a traumatic brain injury. 
° A person does not need to strike their head to sustain traumatic brain injury. 
(eg., 
whiplash, shaken baby syndrome.) ° Even mild traumatic brain injuries can cause 
cognitive impairments serious enough to impact a person's ability to enjoy life 
and to 
be able to work and earn a living. ° People who sustain a brain injury are 3 
times as likely to sustain a (second) brain injury. 
° Those who sustain a second brain injury are 8 times as likely to sustain a 
(third) brain 
injury. 

BICYCLING ° About 75% of all bicyclists who die each 
year die of head injuries. ° 85% of head injuries in bicycle accidents can 
be prevented by wearing a helmet. 

DEMOGRAPHICS ° Males between the ages of 14 and 24 have 
the highest rate of injury. ° Males are almost twice as likely to suffer 
serious brain injuries than females. ° Brain Injuries kill more Americans under 
the age of 34 than all other diseases combined. 

CHILDREN ° Child abuse is the cause of 64% of all infant 
head injuries. ° Approximately 1 in 500 school-age children 
each year receive a head injury severe enough to be hospitalized. 
° 1 million children sustain a head injury each year. 
° 165,000 children will be hospitalized due to a head injury. 
° 1 in 10 of those children hospitalized will suffer moderate to severe 
impairments. 
° Traumatic brain injury is the leading cause of death for children and young 
adults. 36 
36 Page 37 38 
R EGIONAL COMA AND BRAIN INJURY REHABILITATION PROGRAMS 
DELAWARE Christiana Care System, Center for 
Rehabilitation at Wilmington Hospital 
Wilmington 

Admissions Information: 
Usually take Rancho Scale Level 4 and above No Coma Stimulation Program 

Call 302-428-6600 
St. Francis Hospital Rehabilitation Center 
Wilmington 

Admissions Information: 
Usually take Rancho Scale Level 5 and above No Coma Stimulation Program 

Call: 302-421-4541 
Milford Hospital Rehabilitation Program 
Milford Admissions Information: 

Usually take Rancho 5 and above and evaluate on individual basis 
Call 302-424-5962 or 5971 

PENNSYLVANIA Bryn Mawr Rehabilitation 
Malvern 
Admissions Information: 
Usually take Rancho Scale Level 2 and above Call 610-251-5411 

Moss Rehabilitation Hospital 
Philadelphia 

Admissions Information: 
Usually take Rancho Scale Level 1 and above Coma Stimulation Program 

Call 215-456-9700 

Magee Rehabilitation Hospital 
Philadelphia 

Admissions Information: 
Usually take Rancho Scale Level 1 and above Coma Stimulation Program 

Specialized Spinal Cord Injury Program New Contract with Blue Cross/ Blue Shield 

of DE Call 800-96-MAGEE (62433) or 215-587-3157 

NEW JERSEY Mediplex Rehabilitation 
Cherry Hill, New Jersey 
Admissions Information: 
Usually take Rancho Scale Level 1 and above 

Coma Stimulation Program on a case-by-case basis 
Take Rancho Scale Level and above Call 609-342-7600 

MARYLAND Bryn Mawr Rehabilitation 
Baltimore 
Admissions Information: 
Usually take Rancho Scale Level 2 and above No Coma Stimulation Program 

Call 410-225-8522 
Kernan Rehab and Deaton Specialty 
Rehabilitation 
Baltimore Admissions Information: 

Usually take Rancho Scale Level 1 and above Coma Stimulation Program 
Call Kernan @ 410-328-8680 or Deaton @ 410-328-1513 

PAGE 35 37 
37 Page 38 39 
PAGE 36 
D ELAWARE STATE GOVERNMENT RESOURCES STATE DEPARTMENT OF EDUCATION: SPECIAL 
EDUCATION 
Director Exceptional Children and Early Childhood 
Group Department of Education 
P. O. Box 1402 Dover, DE 19903 
(302) 739-5471 

PROGRAMS FOR CHILDREN WITH DISABILITIES: AGES 3 THROUGH 5 
619 Coordinator Exceptional Children and Early Childhood 
Group Department of Education 
P. O. Box 1402 Dover, DE 19903 
(302) 739-4667 

PROGRAMS FOR INFANTS AND TODDLERS WITH DISABILITIES: 
AGES BIRTH THROUGH 2 Part C Coordinator 
Management Svcs. Division Health and Social Services 
2nd Floor, Room 204 1901 North DuPont Highway 
New Castle, DE 19720 (302) 577-4647 

STATE DIVISION OF VOCATIONAL REHABILITATION 
Director Delaware Division of Vocational Rehabilitation 
Dept. of Labor 4425 North Market Street 
P. O. Box 9969 Wilmington, DE 19809-0969 
(302) 761-8275; (302) 761-8336 (TTY) 

OFFICE OF STATE COORDINATOR OF VOCATIONAL EDUCATION FOR 
STUDENTS WITH DISABILITIES Education Associate 
Vocational Technology Education & School to Work Transition 
Department of Education P. O. Box 1402 
Dover, DE 19903 (302) 739-4638 

STATE MENTAL HEALTH AGENCY Director 
Division of Alcoholism, Drug Abuse & Mental Health 
Department of Health & Social Services 1901 North DuPont Highway 
New Castle, DE 19720 (302) 577-4461 

STATE MENTAL HEALTH REPRESENTATIVE FOR CHILDREN 
Director Division of Child Mental Health Services 
Department of Services for Children, Youth, and Their Families 
1825 Faulkland Road Wilmington, DE 19805-1195 
(302) 633-2600 

STATE MENTAL RETARDATION PROGRAM 
Director Division of Mental Retardation 
Department of Health & Social Services Jesse Cooper Building 
P. O. Box 637/ Federal Street Dover, DE 19903 
(302) 739-4386 38 
38 Page 39 40 
PAGE 37 
R ESOURCE GUIDES A Guide To Federal Programs For People With Disabilities 
National Academy for State Health Policy 50 Monument Square, Suite 502 
Portland, ME 04101 (207) 8574-6524 
Consumer Resource Manual List of resources & support groups for people 
with a loss of vision Delaware Health and Social Services 
Division for the Visually Impaired 305 West 8th Street 
Wilmington, DE 19801 Phone: (302) 577-3333 Ext. 25 or 
(302) 577-4730 (V or TTY) 
Delaware Assistive Technology Resource Guide 
Delaware Assistive Technology Initiative Applied Science & Engineering 
Laboratories 
University of Delaware/ A. I. DuPont Institute 
1600 Rockland Road Wilmington, DE 19899 
(302) 651-6790 
Delaware Central Directory of Services For Young Children With Special Needs 
List of resources and services for children with Special needs from 0 to 3 years 
of age 
Part H -Birth to Three Program Delaware Health and Social Services 
Division of Management Services 1901 N. DuPont Highway 
New Castle, DE 19720 (302) 577-4643 

Directory of Human Services For Delaware Delaware Health and Social Services 
Division of State Service Centers 1901 North DuPont Highway 
New Castle, DE 19720 (302) 577-6420 

Guide To Programs And Services Department of Services for Children, Youth 
and their Families Office of Prevention 
Delaware Youth and Family Center 1825 Faulkland Road 
Wilmington, DE 19805 (302) 633-2704 

Guide To Services For People With Disabilities In Delaware 
Delaware Health and Social Services Division of Services for Aging and Adults 
with Physical Disabilities 1901 North DuPont Highway 
New Castle, DE 19720 (302) 577-4791 

The Legal Handbook for Older Delawareans Community Legal Aid Society 
913 Washington Street Wilmington, DE 19801 
(302) 575-0660 
Parent Education and Support Inventory List of parent education and support 
groups 
The Parent Education Committee for the Family 
Services Cabinet Council A. I. DuPont Institute 
1600 Rockland Road P. O. Box 269 
Wilmington, DE 19899 (302) 651-4560 

Services Guide List of mental health services for children 
Delaware Health and Social Services Division of Child Mental Health Services 
1825 Faulkland Road Wilmington, DE 19805 
(302) 633-2599 39 
39 Page 40 41 
PAGE 38 
Coma Recovery Association Inc. 100 East Old Country Rd. 
Suite 9 Mineola, New York 11501 
(516) 746-7714 http:// www. comarecovery. org 

Forget Me Not (FMN) http:// www. forget-me-not. org 
Head Injury Hotline P. O. Box 84151 
Seattle, WA 98124 (206) 621-8558 
e-mail: brain@ headinjury. com http:// www. headinjury. com/ brain 

National Brain Injury Association help support line: (800) 444-6443 
Staffed 9-5 EST, Monday-Friday; answering machine 24 hrs/ day, 7 days/ wk. 

National Rehabilitation Information Center (NARIC) 8455 Colesville Rd. 
Suite 935 Silver Spring, MD 20910-3319 
(800) 346-2742 http:// www. naric. com 

NOVA Online http:// www. pbs. org/ wgbh/ nova/ coma/ resources/ html 
TBI General Resources http:// teach. virginia. edu/ go/ cise/ ose/ categories/ 
tbi. html# res 
The Perspectives Network http:// www. tbi. org 
Who is Waiting. com Brain Injury Information Page 
(800) 992-9447 http:// www. waiting. com 

C OMA RESOURCE LIST 40 
40 Page 41 42 
PAGE 39 
B RAIN INJURY PRINT RESOURCES STATE BRAIN INJURY ASSOCIATION RESOURCES Head 
Injury: A Family Guide (Available in Spanish) Brain Injury Assc. of Florida 
201 East Sample Road Pompano Beach, FL 33064 
Living Well After Brain Injury 
(Survivors share their perspectives/ strate-gies) 

Brain Injury Assc. of Minnesota 43 Main Street SE, S-135 
Minneapolis, MN 55414 
Making Life Work After a Head Injury 
Brain Injury Assc. of Florida 201 East Sample Road 

Pompano Beach, FL 33064 
Self Advocacy for Independent Living 
Brain Injury Assc. of Colorado 6825 E. Tennessee Avenue, #405 

Denver, CO 80224 
TBI Manual: What You Need to Know 
BIA of Michigan 8137 W. Grand River, Suite A 

Brighton, MI 48116 
When A Parent Has a Brain Injury: 
Sons and Daughters Speak Out 
by Marilyn Lash, M. S. W. Massachusetts Head Injury Assc. 

484 Main Street, #325 Worcester, MA 01608 

Why Did It Happen on a School Day: 
My Family's Experience with Brain Injury 
Brain Injury Association 105 North Alfred Street 

Alexandria, VA 22314 
You, Me, Community: Connecting the Pieces 
Connecticut Traumatic Brain Injury Assc. 1800 Silas Deane Hwy., Suite 224 

Rocky Hill, CT 06067 

Many of these sources offer several resources. Call or write and ask for a 
publications list. 
COMA 
The Catastrophe of Coma: A Way Back 
by E. A. Freeman, MB. BS, FRCS (Ed.) ISBN: 0911378936 

Sheridan House Inc. 145 Palisade Street 
Dobbs Ferry, NY 10522 

GENERAL 
Coming Home: Discharge Manual for Families 
of Persons w/ a Brain Injury 
Dana S. DeBoskey, Ph. D., Editor ISBN: 1882855345 

HDI Publishers P. O. Box 131401 
Houston, TX 77219 
Coping with Mild Traumatic Brain Injury 
Diane Roberts Stoler, Ed. D. (Survivor) ISBN: 0895297914 

Avery Publishing Group 120 Old Broadway 
Garden City Park, NY 11040 
Educating Families: A Guide to Medical, 
Cognitive & Social Issues 
By D. DeBoskey, J. Hecht and C. Calub ISBN: 083420231X 

Aspen Publishers, Inc. 200 Orchard Ridge Drive 
Gaithersburg, MD 20878 
Living With Head Injury 
M. D. van den Broek, W. Schady & M. J. Coyne ISBN: 0719041899 

Manchester University Press Fifth Avenue, Room 400 
New York, NJ 10010 41 
41 Page 42 43 
CHILDREN'S ISSUES 
Children with Acquired Brain Injury 
Edited by: G. Singer, A. Glang & J. Williams ISBN: 1557662339 

Paul H. Brookes Publishing Co. P. O. Box 10624 
Baltimore, MD 21285 
Pediatric Traumatic Brain Injury: Proactive 
Intervention 
by Jean L. Blosser and Roberta DePompei ISBN: 1565931688 

Singular Publishing Group, Inc. 4284 -41st Street 
San Diego, CA 92105-1197 
Teaching Your Child The Language of Social 
Success 
by M. Duke PhD, S. Nowicki PhD, E. Martin MEd ISBN: 1561451266 

Peachtree Publishers, Ltd. 494 Armour Circle NE 
Atlanta, GA 30324 
When Your Child is Seriously Injured: The 
Emotional Impact on Families 
When Your Child Goes to School After an Injury 
Exceptional Parent Dept ML, P. O. Box 8045 

Brick, NJ 08723 

WRIT TEN BY SURVIVORS OR FAMILY MEMBERS 
Blessed Tragedy 
by Karen Wells (Survivor) ISBN: 0964940175 

Rhodes & Easton 121 E. Front Street, 4th Floor 
Traverse City, MI 49684 
Brainlash: Maximize Your Recovery from 
Mild Brain Injury 
by Gail L. Denton, Ph. D. (Survivor) Attention Span Books 

P. O. Box 788 Niwot, CO 80544-0788 

Crushed But Not Destroyed 
by Sharon Longenecker (Spouse) ISBN: 0961424400 

Sun Ray Publishing Co. 27885 S. E. Sun Ray Drive 
Boring, OR 97009 
In Search of Wings 
by Beverly Bryant (Survivor) ISBN: 1882332008 

Wings Publishing 1 Clifford Court 
South Paris, ME 04281 

PAGE 40 42 
42 Page 43 44 
PAGE 41 
G LOSSARY TERMS ANOSMIA -Loss of the sense of smell. ANOXIA -A lack of oxygen. 
Brain cells need 
oxygen to exist. When blood flow to the brain is reduced or when oxygen in the 
blood is low, brain cells are damaged. 
BRAIN SCAN -An imaging technique in which a radioactive liquid is injected into 

the blood stream so that pictures of the brain can reveal tumors, blood clots, 
hemor-rhages, 
or abnormal anatomy. 
BRAIN INJURY -Damage to living brain tissue caused by external mechanical force 
or non-traumatic 

causes such as tumors, strokes, infections, or other biological events. 

CATHETER -A flexible plastic tube of varying sizes utilized for withdrawing 
fluids from or 
introducing fluids into a cavity of the body. This tubing is also used in 
specialized 
medical procedures. 
CEREBROSPINAL FLUID -The liquid which fills the ventricles of the brain and 
sur-rounds 

the brain and spinal cord. 
CLOSED HEAD INJURY -Trauma to the head that does not penetrate or fracture the 
skull, 

but damaged the brain. 
COGNITION -The conscious process of the mind by which we are aware of thoughts 

and perception, including all aspects of perceiving, thinking, and remembering. 

COMA -A state of unconsciousness from which the patient cannot be aroused, even 
by powerful stimulation. 
CT SCAN/ COMPUTERIZED TOMOGRAPHY -A series of computerized X rays of the brain 

at various levels to reveal its structure. This procedure shows the more obvious 
changes 
such as a hematoma. 
DECUBITUS -A bed sore or discolored, open area of skin damaged by pressure. 
Common 

areas to this breakdown of skin include buttocks, hips, shoulder areas, ankles, 
heels, 
and elbows. 

DEFICIT -A lacking or deficiency in the amount or quality of functioning. 
DIPLOPIA -Double vision; the perception of two images of a single object. 
EEG/ ELECTROENCEPHALOGRAM -Record-ing electrical activity of the brain by 
position-ing 
electrodes on the scalp or on in the brain itself. 

ECG/ EKG ELECTROCARDIOGRAM -Moni-toring heart rate and rhythm by positioning 
electrode pads on the patient's chest, which are connected to a monitor. 

EYE TAPE -Tape used to close the eyes of a patient who is unable to blink. 
Blinking is 
important to keep the eyes moist. This natural reflex is lost in patients who 
are unresponsive 
but have open eyes. Eye drops may be utilized and the eye tape would be used to 
keep them 
closed. 
HALO -A metal ring used for patients with upper spinal cord injuries which 
surrounds or 

encircles the patient's head, allowing for proper alignment of the neck and 
spinal 
column. In order to prevent further injury to the spinal cord it is important 
that the patient 
with a broken spine remain still. 
HOSPICE -Home health care choice when recovery is not possible, focusing on 
care, not 

cure, including pain and symptom manage-ment and emotional support. 

JEJUNOSTOMY TUBE (J-TUBE) -A type of feeding tube surgically inserted into the 
small 
intestine. 
MRI/ MAGNETIC RESONANCE IMAGING -A diagnostic procedure that uses magnetic 
fields 

to create pictures of the brain's soft tissue. MRI can provide a more detailed 
picture than 
the CT scan. 
ORTHOSIS -Splint or brace used to support, align, and improve function of 
movable parts 

of the body. 43 
43 Page 44 45 
PERSISTENT VEGETATIVE STATE -A condi-tion in which the patient is unable to 
speak or 
follow simple commands and does not re-spond in any psychologically meaningful 
way. 
The transition from coma to a vegetative condition reflects changes from a 
period of no 
response to the internal environment, other than reflexively, to a state of 
wakefulness but 
with no indication of awareness. Normal levels of blood pressure and respiration 
are automati-cally 
maintained. 
PLATEAU -A temporary or more permanent leveling off in the recovery or 
rehabilitation 

process. 
RT/ RANDOM MOVEMENT -An action of moving without obvious reason or purpose. 

RANGE OF MOTION -An exercise in move-ment to the joint, so to prevent 
contractures. 
RESPIRATOR -(see ventilator) 
SCANNING -An active, usually visual search of the environment for information. 
Used in 

reading, driving, and other daily activities. 
SEIZURE -An uncontrolled discharge of nerve cells which may spread to other 
cells through-out 

the brain. The sudden attack is usually momentary, but may be accompanied by 
loss 
of bowel and bladder control, tremors, and/ or aggressiveness. 

SENSORY INTEGRATION -Interaction of two or more sensory processes in a way which 

enhances the adaptiveness of the brain. 
SENSORY STIMULATION -Arousing the brain through any of the senses. 

SEQUENCING -Contracting muscles in an orderly and meaningful manner or reading, 
listening, and expressing thoughts. 
SHUNT -A procedure of removing excessive fluid in the brain. A surgically placed 
tube 

connected from the ventricles deposits fluids into the abdominal cavity, heart, 
or large veins 
of the neck. 
VENTILATOR -Equipment that does the breathing for the unresponsive patient. The 

machinery serves to deliver air in the appropri-ate percentage of oxygen and at 
the appropri-ate 
rate. 

MEDICATION TYPES 
ANTIBIOTICS -Used to treat a variety of infections which often occur in 
unconscious 

patients. Pneumonia and urinary tract infec-tions are most common. Patients may 
also be 
placed on antibiotics to help prevent possible infections. 

ANTICOAGULANTS -Medications, such as heparin or coumadin, utilized to show down 
normal blood clotting and prevent blood clots from forming. 

ANTICONVULSANTS -Anti-seizure medica-tions that help prevent the temporary 
seizures 
or convulsions which occur during abnormal electrical brain activity. 

ANTIDEPRESSANTS -Depression and feelings of low self-worth are common after 
brain 
injury. These medications help the patient deal with these negative feelings. 

ANTIPSYCHOTICS -Brain injury is often accompanied by anxiety, personality 
change, 
and aggressiveness. These medications add a calming influence and prevent mood 
swings. 

BETA RECEPTOR BLOCKERS -A group of medications used to block the nerves in 
certain areas of the brain, to reduce agitation, rapid heart beat, elevated 
blood pressure, and 
tremors. 
DECADRON (DEXAMETHASONE) STEROIDS -A medication which appears to help improve 

function of the brain. It also decreases brain swelling and excessive water 
accumulating in 
the brain. 
DIDRONEL (ETIDROVATE DISODIUM) -Given to patients who demonstrate a ten-dency 

to form calcium deposits and abnormal bone formation around joints and in 
injured 
soft tissues. 
LAXATIVES -These stool softeners are used along with a carefully supervised 
dietary 

program to promote bowel regularity, which is frequently affected because of 
nervous system 
damage and long periods of inactivity in bed. 
MUSCLE RELAXANTS -Brain-injured individu-als often lose the ability to regulate 
the forces 

of muscle fibers resulting in spasticity and pain. These drugs relax the muscles 
for greater 
comfort, to ease therapy, and to prevent spasticity. 

PAGE 42 44 
44 Page 45 46 
PAGE 43 
R ESOURCES FOR FAMILIES OF PERSONS IN COMA 
HOTLINES Brain Injury Assn. of DE ............ 1-800-411-0505 
Crisis Intervention 
(Kent/ Sussex) .......................... 1-800-345-6785 
(New Castle) ............................ 1-800-652-2929 
Delaware Helpline .................... 1-800-464-HELP 
National Brain Injury 
Association Hotline ................. 1-800-444-6443 
703-236-6000 
STATE AGENCIES Delaware Insurance Dept. .......... 1-800-282-8611 

Department of Elections .............. (NC) 577-3464 
(K) 739-4498, (S) 856-5367 
(If clients/ families want to know names of 
their elected representatives) 
DHSS, Division for Alcoholism, Drug 
Abuse and Mental Health .............. 577-4240 
Delaware Psychiatric Center ................ 577-4000 
DHSS, Division for Mental 
Retardation ....................... 369-2186, 934-8031 
DHSS, Division of Social 
Services (Medicaid) ............... 1-800-372-2022, 
368-6610, 577-4448, 422-1520 
DHSS, Division for the 
Visually Impaired .............................. 577-4730 
DOL, Division of Vocational 
Rehabilitation .. 761-8275, 739-5478, 856-5730 
Violent Crimes Compensation 
Board........................ 995-8383, 1-800-890-0045 
(to assist innocent victims of crime) 

FEDERAL AGENCIES Social Security Administration ............ 323-0304 
1-800-772-1213 
Supplemental Security Income (SSI) 1-800-562-8080 

This is a list of general resources for families of persons in coma in Delaware. 
If you need any 
further information, you can contact the Division of Services for Aging and 
Adults with Physical 
Disabilities at 1-( 800) 223-9074. 

HOSPICE Compassionate Care Hospice ......... 1-800-219-0092 
Delaware Hospice ............................. 1-800-838-9800 
First State Hospice ...................................... 995-2273 
Hospice of the DE Valley ................. 1-800-311-3184 

LEGAL/ INSURANCE HELP Delaware Volunteer Legal Services.......... 478-8680 
Disabilities Law Program of 
Community Legal Aid ................. 1-800-292-7986 
Lawyer Referral Handbook ..................... 658-5278, 
1-800-773-0606 
Legal Handbook .......................... 1-800-223-9074 or 
1-800-292-7986 (Free) 
Legal Services Corp. of DE ....... 575-0408, 734-8820 
Delaware Insurance Commissioner 1-800-282-8611 

MEDICAL INFORMATION/ REFERRAL Call a Nurse 
................................................. 428-4100 
Center for Rehabilitation at 
Wilmington Hospital.............................. 428-6600 
Christiana Care, Health 
Information Resource Center ............... 661-3471 
Delaware Academy of Medicine 
Library ...................................................... 656-1629 
DuPont Hospital For Children ................. 651-4000 
People's House ....................... 738-0677 or 456-3404 
(lodging for families of hospital patients) 
Physician Referral ....................................... 658-3168 
Psychologists' Referral Network .............. 764-3931 
Social Worker Referrals .............................. 651-9424 45 
45 Page 46 
NOTES 
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