Download pdf - COMA GUIDE FOR CAREGIVERS

Transcript
Page 1: COMA GUIDE FOR CAREGIVERS

COMA GUIDEFOR

CAREGIVERS

Delaware Health and Social Services, Division of Servicesfor Aging and Adults with Physical Disabilities

1901 N. DuPont Highway • New Castle, DE 19720

Page 2: COMA GUIDE FOR CAREGIVERS

OUR VISIONFOR 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.

Page 3: COMA GUIDE FOR CAREGIVERS

Dear Friends:

Families who are going or have been through the experience ofhaving a family member or friend in coma have many needs. Ascaregivers of a person who is in coma or recently recoveringfrom a coma, they may have many concerns and questions intrying to cope with a serious illness. This guide was developedas a result of the need we identified, when our 29-year-olddaughter, Jill Elizabeth Russell Eddy was in coma for 12 months.We had no such guide or central place where comprehensiveinformation and resources on coma could be easily obtained.When we spoke to our State Representative, William Oberle, heunderstood our concerns and enthusiastically supported theidea of the COMA GUIDE FOR CAREGIVERS.

My family and I would like to thank Representative Oberle andthe Division of Services for Aging and Adults with PhysicalDisabilities for their wonderful support and untiring efforts tomake this Guide a reality.

It is my sincere hope that the informa-tion supplied in this booklet will bebeneficial to families who are dealingwith such a tragedy and in some smallway will bring support and comfortduring their time of need.

Linda Morrison Russell,Mother of Coma Patient

PAGE 1

Michael, Jill, and Megan Eddy

Page 4: COMA GUIDE FOR CAREGIVERS

ACKNOWLEDGEMENTS

OUR SPECIAL THANKSTO 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 theDivision 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: [email protected]

PAGE 2

Page 5: COMA GUIDE FOR CAREGIVERS

TABLE OF CONTENTS1 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

PAGE 3

DSAAPD DHSS
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.
DSAAPD DHSS
Page 6: COMA GUIDE FOR CAREGIVERS

INTRODUCTIONA 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 withbrain injury. It is difficult for any physician to predict the outcome during thefirst 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 avariety of helpful material. The first section describes the structure and functionof 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 secondsection of the booklet discusses post-traumatic reactions of family members andclose friends and answers some common questions. A glossary of hospital termsis 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 behard to concentrate and remember explanations. Each person is different, how-ever. Some want to learn everything they can as quickly as possible. Othersprefer 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 tojot down questions as they go along. You may wish to use the blank note page inthe back of the resource guide for this purpose. In addition, keeping a journal ordiary of events, feelings, concerns, and questions is usually helpful.

Plan to use this resource guide as you collect information about brain injury anddiscuss your concerns with family, friends, and caregivers. We hope this bookletprovides a strong foundation of information for the days ahead.

PAGE 4

Page 7: COMA GUIDE FOR CAREGIVERS

PAGE 5

NOTICE: The purpose of the following information is to review certain medicalissues. The information contained herein has been supplied as a courtesy from BrynMawr Rehab, Malvern, PA, and thus shall not be reproduced nor be construed asmedical 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 partsthat perform very specific functions. Many ofthese different brain areas are active simulta-neously or sequentially during daily activities.Consider, forexample, that thesimple act ofdrinking a glass ofwater requires atleast 9 separatebrain functions. Youdecide to drink,initiate the act ofdrinking, receivevisual informationabout the glass,move your arm andhand to the glass,receive sensationsfrom your handthat the glass is init, coordinate themovement of theglass to your mouthusing your handand arm, and then coordinate the sequentialmovements of your mouth, tongue, andthroat to take a sip while taking a pausein breathing.

This is quite a bit of activity to occur in just afew seconds. Yet the brain manages to per-form these kinds of routine actions regularlyand speedily through constant communica-tion between one part and the next. An injury,however, can interrupt the connectionsbetween the areas of the brain and so inhibitthe simplest tasks.

The brain is very complex. Though researchers are constantly makingnew discoveries about how it functions, it is possible through a basicexplanation of the organ to gain some understanding of it’s behavior.

Although each brain area is involved in manyvaried functions and each activity requiresinvolvement of many brain areas, certaintypes of deficits commonly occur after aninjury to a specific part of the brain. In fact, in

some cases, the areas of the brain that havebeen damaged can be identified by thechanges the individual exhibits afterward.

As the director of all the body’s functions, thebrain uses a great many resources. At least 20percent of the blood the heart pumps goes tothe brain, and several million nerve cellssend, receive, and interpret messages thatkeep us functioning and acting purposefully.

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

THE BRAIN: STRUCTURE AND FUNCTION

Diagram 1. Cross Section of the Brain

Page 8: COMA GUIDE FOR CAREGIVERS

PAGE 6

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 areidentified in Diagrams 1 and 2. Descriptions ofthe different areas follow, along with theprimary functions they control.

SKULLThe bones that come together to completelycover and protect the brain.

BRAIN STEMAlthough this area is anatomically small, itplays a very important role in many brainfunctions. Injuries to the brain stem can affectmotor function, eye movement, speech, swal-lowing, and the level of consciousness.

CEREBELLUMThis area is particularly important in coordina-tion and balance.

CEREBRUMThe largest part of the brain, it is divided intothe left and right cerebral hemispheres. Gener-ally, each hemisphere directs the motor andsensory functions for the opposite side of the

Diagram 2. Lobes of the Brain

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

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

PARIETAL LOBESImportant in sensation, perception, attentionand complex aspects of brain processing.

TEMPORAL LOBESRegulate memory function, language informa-tion, and behavior.

OCCIPITAL LOBESResponsible for aspects of visual function.

Page 9: COMA GUIDE FOR CAREGIVERS

PAGE 7

WHAT HAPPENSWITH BRAIN INJURY

Even though the brain is well protected, itmay be injured. Damage to the brain mayoccur immediately, or it may develop after theinjury due to swelling or bleeding. The skullis usually filled like this:

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

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

The flow of Cerebrospinal Fluid may alsobecome blocked. This will cause the openspaces (ventricles) to become enlarged. Thisis called hydrocephalus.

Any of these changes can cause increasedintracranial pressure.

Ventriclesfilled withCerebrospinalFluid

BrainTissue

Blood

Hematomaor clot

Enlargedventricles

Swollenbraintissue(edema)

NORMALBRAIN

BRAINWITHEDEMA

BRAINWITH AHEMATOMA

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

BRAINWITHHYDROCEPHALUS

Page 10: COMA GUIDE FOR CAREGIVERS

PAGE 8

Patients with brain injury require frequentassessments and diagnostic tests. Theseinclude:

• NEUROLOGICAL EXAM: A series of questionsand simple commands to see if thepatient can open their eyes, move, speak,and understand what is going on aroundthem. For example: What is your name?Where are you? What day is it? Wiggleyour toes. Hold up two fingers.

• X-RAY: A picture that looks at bones to seeif they are broken (fractured). It can alsobe used to take a picture of the chest tolook at the lungs. This test may be done atthe bedside or in the X-ray departmentand takes between 5-30 minutes tocomplete.

• CT SCAN (CAT SCAN): An X-ray that cantake pictures of the brain or other parts ofthe body. The scan is painless but thepatient must lie very still. The test takes30-60 minutes to complete.

• MRI (MAGNETIC RESONANCE IMAGINGSCAN): A large magnet and radio waves

are used, instead of X-rays, to take pic-tures of the body’s tissues. It is painlessbut noisy. The machine is shaped like along tube. The patient must lie on a flattable in the middle of the machine. Thetest takes about 60 minutes to complete.

• ANGIOGRAM: A test to look at the bloodvessels in the brain. Dye is put into a cath-eter in an artery (usually in the groin) thatsupplies blood to the brain. This test can tellif the arteries or veins have been damagedor are spasming. The test takes 1-3 hours.

• ICP MONITOR: A small tube placed into orjust on top of the brain through a smallhole in the skull. This will measure thepressure inside the brain (intracranialpressure).

• EEG (ELECTROENCEPHALOGRAPH): A test tomeasure electrical activity in the brain.Special patches called electrodes areapplied to the head to measure the activ-ity. The test is painless and can be done atthe bedside or in the EEG department. Thelength of the test varies.

HOW ARE BRAIN INJURIESEVALUATED?

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

Page 11: COMA GUIDE FOR CAREGIVERS

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 willbe elevated slightly and the neck kept straight.This position may decrease the intracranialpressure by allowing blood and cerebrospinalfluid to drain from the brain. Please do notchange the position of the bed without askingthe nurse.

FLUID RESTRICTION: It may be necessary to limitthe fluids that a patient receives. The brain islike a sponge. It swells with extra fluid. Limit-ing fluids can help control the swelling. Pleasedo not give fluids without asking the nurse.

MEDICATIONS: There are several types of medi-cations used with brain injury. Some of theseinclude:

• Diuretics are used to decrease the amountof water in the patient’s body. This makesless water available to the brain forswelling.

• Steroids are used to decrease swelling inthe brain tissue.

• Barbiturates are given if the patient’sintracranial pressure is very high and hardto control. This medicine puts the patientinto a deep “sleep” called a barbituratecoma. This may help prevent more swell-ing and damage.

• Anticonvulsants are used to preventseizures. Seizures occur as a result of extraelectrical activity in the brain. There areseveral types of seizures. The most com-mon type causes the patient to havejerking movements of the arms and legsfollowed by sleep. Other types may causeslight tremors of the face, or staring spells.Please notify the nurse or doctor if you seeany signs. Some patients have a seizure atthe time of injury while others may de-velop seizures after the injury.

VENTRICULAR DRAIN (VENTRICULOSTOMY): A smalltube that is placed in the ventricle and con-nected to a drainage bag. It measures pressureinside the skull and drains CSF (cerebrospinalfluid). Some CSF is drained out of the brainto help control the pressure inside the skull.Pressure changes may be quickly seenand treated.

VENTILATOR: A machine used to help the patientbreathe. Ventilators may breathe for the patientor they may be used to give extra breaths.When extra breaths are given the patient’sblood vessels in the brain become smaller andthis helps control the intracranial pressure.

SURGERY: There are three types of surgery usedwith brain injury:

• Craniotomy - The skull is opened to relievethe causes of increased pressure inside theskull. Causes may be fractured bones,blood clots, or swollen brain tissue.

• Burr holes - A small opening is made intothe skull to remove blood clots.

• Bone flap removal - A piece of bone isremoved from the skull to relieve pressurecaused by swollen brain tissue.

HOW ARE BRAIN INJURIESTREATED?

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

Page 12: COMA GUIDE FOR CAREGIVERS

PAGE 10

ANTIBIOTICS:Antibiotics are used to prevent and treatinfections that occur. It is not unusual forpeople with brain injuries to get infections.They may get pneumonia, bladder infections,blood infections, or infections in the brain orcerebrospinal fluid called meningitis.

CHEST PT AND SUCTIONING:If the patient has pneumonia you may seestaff using a vibrating machine or clappingon the patient’s chest. This loosens thephlegm in the lungs. Then the patient will beasked to cough. If the patient is not able tocough up the phlegm they must be suctioned.When a patient is suctioned a catheter isplaced in the back of the throat or into thelungs.

TRACHEOSTOMY (TRACH):If the patient has a large amount of lungsecretions or is on a ventilator for a long timethey may need a trach. A trach is a tubeplaced in the trachea (windpipe). It will makeit easier for the patient to cough up phlegm. Italso allows the nurse to suction the lungs.

Initially patients will be unable to talk whilethe trach is in place. A trach is not usuallypermanent. As the patient improves, theymay be able to have the trach taken out.

SUCTIONING OF THE STOMACH:Sometimes after brain injury, the stomach willstop working for a short time. This is calledan ileus. Even though the stomach may notbe working it continues to make acids. Theacids may damage the stomach lining andcause stomach ulcers if they are not removed.

A nasogastric tube (NG) will be placed throughthe nose into the stomach. This tube will beused to help remove stomach secretions.Medications may also be given to help preventstomach ulcers.

NUTRITION:Meeting nutrition and fluid needs are impor-tant after brain injury. Patients may be lessactive, yet have very high nutritional needs. Atfirst, nutrition can be supplied by an IV. Whenthe stomach starts working an evaluation ofchewing and swallowing safety will be com-pleted. If the patient is too sleepy to eat, or isunable to swallow, a small nasogastric feedingtube may be used for nutrition. The tube isplaced through the nose into the stomach.Liquid formula will be given through thefeeding tube. Feedings may be given continu-ously or several times a day. The dietician willassist with food and fluid selection. Milk-shakes and liquid formulas may also be usedto provide extra calories and high proteinnutrition.

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

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

RANGE OF MOTION (ROM) AND SPLINTS:Brain injured patients may not move theirjoints as much as needed. This can cause tightmuscles and joints called contractures. Rangeof motion (ROM) exercises and special splintsfor hands and feet help prevent contractures.

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

WHAT OTHER TREATMENTSMAY BE USED?

Page 13: COMA GUIDE FOR CAREGIVERS

PAGE 11

WHAT EQUIPMENT WILL YOUSEE WHEN YOU VISIT?

MONITOR SCREEN: A machine used to keeptrack of heart rate, breathing, blood pressure,and intracranial pressure.

HEAD DRESSING: A bandage around the headused to keep the wound or incision cleanand dry.

ICP MONITOR: A small tube placed into orjust on top of the brain through a small holein the skull. This will measure the amount ofpressure inside the brain (intracranial pres-sure).

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

ENDOTRACHEAL TUBE: A tube inserted throughthe patient’s nose or mouth into the trachea(windpipe) to help with breathing andsuctioning.

EKG LEADWIRES: Wires connected to the chest

with small patches that measure the heart rateand rhythm.

INTRAVENOUS CATHETER (IV) AND INTRAVENOUSFLUID: A flexible catheter which allows fluid,nutrients, and medicine to be given directlyinto a vein.

VENTILATOR: A machine used in the SurgicalIntensive Care Unit that may assist withbreathing or breathes completely for a patient.

ANTI-EMBOLISM STOCKINGS (FREQUENTLY CALLEDTEDS): Long white stockings used to helpprevent blood clots in the legs.

SEQUENTIAL COMPRESSION STOCKING (FREQUENTLYCALLED KENDALLS): Plastic leg wraps that helpprevent pooling of blood in the legs by inflatingand deflating around the legs.

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

INTRODUCTIONWhen the patient is seenin the emergency roomthe doctor will decidewhich treatments to use. Avariety of equipment willbe needed. It is helpful toknow the purpose ofequipment used. Pleasefeel free to ask the staffany questions you mayhave. The followingpicture and text describesome of the most commonequipment.

Monitor screen

Head dressing

Endotracheal tube

ICP monitor

Ventilator

Anti-embolismstocking

Foleycatheter

Sequentialcompressionstocking

IVcatheter

EKGlead wires

IVfluid

Page 14: COMA GUIDE FOR CAREGIVERS

PAGE 12

COMA SCALES AND COMASTIMULATION PROGRAMSThere are several scales used to describe patients with brain injury. TheRancho Scale is used more often by health care providers to indicatelevels of recovery. The Glascow Coma Scale rates eye opening, motormovement (movement of the arms and legs), and verbal response.

EYE OPENING

4 = Spontaneously3 = To voice2 = To pain1 = No response

Rehabilitation centers may use a scale calledthe Rancho Levels. The eight level scale wasdeveloped by the professional staff of theRancho Los Amigos Hospital in Downey,California to describe the stages of recoveryafter brain injury. What follows is a simpli-fied explanation of each level of recovery.

Remember, the patient never fits neatly intoone level of the scale, but rather into ageneral area, exhibiting characteristics ofseveral levels. Also be aware that individualpatients progress through the levels atdifferent speeds, some skipping levels,others “getting stuck” for a while.

The following is a brief description of theRanchos Los Amigos Scale of CognitiveFunctioning:

LEVEL 1 - No response. The patient appearsto be in a very deep sleep or coma and doesnot respond to voices, sounds, light, ortouch.

BEST MOTOR RESPONSE

6 = Follows commands5 = Localizes to pain4 = Withdrawal to pain3 = Decorticate2 = Decerebrate1 = No Response

BEST VERBAL RESPONSE

5 = Oriented and converses4 = Disoriented and converses3 = Inappropriate words2 = Incomprehensible sounds1 = No response

GLASCOW COMA SCALE

RANCHOS LOS AMIGOS SCALE

LEVEL 2 - Generalized response. The patientmoves around, but movement does not seem tohave a purpose or consistency. Patients mayopen their eyes but do not seem to focus onanything in particular.LEVEL 3 - Localized response. Patients begin tomove their eyes and look at specific people andobjects. They turn their heads in the directionof loud voice or noise. Patients at Level 3 mayfollow a simple command, such as “Squeezemy hand.”LEVEL 4 - Confused and agitated. The patient isvery confused and agitated about where he orshe is and what is happening in the surround-ings. At the slightest provocation, the patientmay become very restless, aggressive, orverbally abusive. The patient may enter intoincoherent conversation.

LEVEL 5 - Confused, inappropriate but notagitated. The patient is confused and does notmake sense in conversations but may be able tofollow simple directions. Stressful situationsmay provoke some upset, but agitation is no

Page 15: COMA GUIDE FOR CAREGIVERS

PAGE 13

longer a major problem. Patients may experi-ence some frustration as elements of memoryreturn.LEVEL 6 - Confused but appropriate. Thepatient’s speech makes sense, and he or she isable to do simple things such as gettingdressed, eating, and teeth brushing. Althoughpatients know how to perform a specificactivity, they need help in discerning when tostart and stop. Learning new things may alsobe difficult.LEVEL 7 - Automatic, appropriate. Patients canperform all self-care activities and are usuallycoherent. They have difficulty rememberingrecent events and discussions. Rational judg-ments, calculations, and solving multi-stepproblems present difficulties, yet patients maynot seem to realize this.

LEVEL 8 - Purposeful and appropriate. At thislevel, patients are independent and can processnew information. They remember distant andrecent events and can figure out complex andsimple problems.

For a more detailed explanation of the 8 levels of thescale and effective interventions, read the article“AAC and TBI: Transitioning Systems through thePhases 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 thearticle is www.kaddath.mt.cs.cmu.edu

Coma is an unresponsive state so the patient isnot able to open his eyes. Coma may serve as amechanism for the brain to preserve itselfduring times of extreme stress, such as follow-ing an injury. It is important that familiesknow the rehabilitation process can beginwhile the patient is still in a coma. The impor-tance of early intervention is supported byrecent studies. The length of time that a personis in a coma, does not necessarily determine thedegree of recovery.

Health care professionals use a variety oftherapeutic techniques and programs to movepatients from a state of unconsciousness(coma) toward a greater awareness of theirenvironment. Many of the programs are basedon the theory that intense stimulation of thesenses will excite the brain’s reticular activatingsystem, which is responsible for arousal andwakefulness. Scientists report that the brain isfairly plastic and has the ability to modify its

own structural organization and function,although the actual mechanisms that cause thisto occur are not yet fully understood. Manybelieve that environmental enrichment andsensory stimulation can accelerate the recoveryprocess. Sensory stimulation should focus onverbal conversation, familiar objects andmemories, such as personal blankets, record-ings of favorite music, pets, and posters. Someresearchers recommend vigorous stimulation ofthe senses, using, for example, ringing alarmclocks, rubbing the skin, pleasant and unpleas-ant flavors and smells put on the tongue orheld to the nose, or bright lights flashed in frontof the eyes. The sensory stimulation programsare also careful to modulate the amount ofstimulation given to the patient and are work-ing to develop precise, structured regimens toavoid random stimulation and overstimulation.

We have listed, in the appendix to this guide,several sources of information related to comaand coma stimulation and how you mayhelp the therapists with your loved one’srehabilitation.

Using information from the Rancho Scale, thehealth care team can begin treatment that willhelp develop skills and promote appropriatebehavior. Health care professionals oftensuggest the following simple measures tofamily and friends while the patient is still incoma:

• Always talk as if the patient hears whenyou are nearby.

• Speak directly to the patient about simplethings and reassure him or her frequently.

• Explain events and noises in the sur-rounding area. Tell the patient what hashappened and where he or she is.

• Touch and stroke the patient gently. Tellthe patient who you are each time youapproach the bedside. Hold his or herhand.

• Play favorite music for the patient or tapea soothing message that can be playedwhen you are away from the bedside.

• For parents of young children, tapeyourself singing or reading your child’sfavorite stories.

Page 16: COMA GUIDE FOR CAREGIVERS

PAGE 14

A. THE EFFECTS OF A STROKE

Because strokes can occur on either side of thebrain, it is important to understand theuniquely different symptoms they cause. Thelocation of the stroke determines which side ofthe body will be affected. A stroke on the leftside of the brain causes right-sided paralysis(hemiplegia) or weakness, while damage tothe right side of the brain causes left-sidedparalysis or weakness.

Some strokes may produce mild, or onlytemporary effects. Other strokes can producepermanent damage. The effects of a strokedepend upon which area of the brain has beendamaged, which brain cells were damaged,how much damage has occurred, how easilyand quickly the body repairs the blood supplysystem to the brain, and how quickly otherareas of the brain can take over the work of thedamaged brain cells. Some of the effects ofstroke are global, that is, they can occurwhether the stroke is on the right or left side ofthe body. Other effects are unique, dependingupon the area of the brain that is damaged.

GLOBAL EFFECTS

Memory is commonly affected following astroke regardless of which side is affected.Because memory is comprised of many variedcomponents, patients may experience differenttypes of memory impairment. Attention andconcentration skills may also be reduced alongwith reasoning and judgment. Reading may

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

THE EFFECTS OF A BRAIN INJURY

pose some problem for individuals sustaininga left or right stroke; others may experiencetrouble writing due to motor weakness,paralysis, or poor coordination.

Depression is a common reaction to illness orinjury and should be considered normal aftera stroke, if it doesn’t last for a prolongedperiod of time. Some depression may becaused by chemical changes associated withthe injury to the brain.

Emotional changes are also common. Anindividual may cry easily and then beginlaughing for no apparent reason or may bemore irritable and more easily frustratedthan before the stroke.

A person’s bowel and bladder functioningmay also be affected following a left or rightstroke. Many management techniques can beused to improve function.

THE EFFECTS OF A LEFT STROKE

The most apparent physical consequence of astroke on the left side of the brain is right-sided paralysis (hemiplegia). The weaknessor paralysis more often occurs to the handand arm rather than the leg. For some indi-viduals, the hemiplegia can prevent themfrom moving the affected limb, while othersmay experience only a mild weakness. Thismay cause difficulty standing, walking,dressing, bathing, and eating.

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

Page 17: COMA GUIDE FOR CAREGIVERS

PAGE 15

Speech and language problems are also com-mon among individuals who have sustained aleft stroke. There may be difficulty in bothspeaking and understanding. In some cases,the muscles in the face, neck, mouth, and throatalso become weakened or paralyzed causingslow, labored slurred speech and an abnormalvocal quality.

Other consequences of a left stroke are diffi-culty swallowing or inability to swallow(dysphagia) and vision problems such asdouble vision or a partial blindness affectingonly half the field of vision in each eye. Anindividual’s behavior may also become slow, orappear hesitant when solving problems.

THE EFFECTS OF A RIGHT STROKE

A stroke on the right side of the brain maycause paralysis or weakness on the left side ofthe body. A person who has suffered a rightstroke may display some degree of muscleweakness and dysphagia, vision deficits,memory, attention and concentration deficits.However, they frequently have adequatecommunication abilities.

Persons who suffer right strokes often havedifficulty judging distance, size, position, rateof movement, form and how parts are relatedto wholes.

One-sided neglect, that is, ignoring a weak orparalyzed body part may also develop with aright side stroke. Individuals with one-sidedneglect may not even recognize that a bodypart is theirs.

Right strokes can also cause an individual tohave problems understanding body language.A patient may not be able to interpret informa-tion from tone of voice, body movements, orfacial expressions.

While persons with left strokes are slow andcautious, persons with right strokes tend to beimpulsive and quick when completing activi-ties. They are often unaware of their deficitsand are unrealistic about their abilities. Someindividuals may try to complete activities theycannot perform safely.

RIGHT STROKE

Weak or paralyzedleft side

Neglect of weak orparalyzed body part

Difficulty judgingdistance, size,position, form,and rate ofmovement

Poor judgment andreasoning

Memory, attention, andconcentration deficits

Behavior:quick and impulsive

LEFT STROKE

Paralyzed or weakright side

Speech-languagedeficits and/orswallowingdisorders

Memory, attention,and concentrationdeficits

Poor judgmentand reasoning

Behavior:slow, hesitant,disorganized

Page 18: COMA GUIDE FOR CAREGIVERS

PAGE 16

B. MEDICAL AND RELATEDPHYSICAL EFFECTS OF ATRAUMATIC 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 familymember. As noted earlier, each person with abrain injury has had a unique injury and willexperience a unique recovery process.

PROBLEMS WITH NUTRITION AND EATING

Physical and cognitive changes such as dimin-ished attention, poor hand coordination, anddifficulty in swallowing, can disrupt normaleating habits. Proper nutrition is essential tohealing, however, so evaluations can be per-formed to determine the best means for apatient to maintain adequate nutrition. Retrain-ing efforts through nursing, occupationaltherapy, and speech therapy can help a personrecover eating abilities.

Dysphagia is the term that describedswallowing disorders. A swallowing disordercan occur at various points along the food’spathway to the stomach. It is important torecognize that placing food into someone’smouth and having it disappear withoutoutward signs of choking does not assure thatthe food has been swallowed safely. In asignificant number of patients, particularly ifthey are just emerging from coma or showconfusion, food can enter the trachea (wind-pipe) and proceed to the lungs, where it cancause pneumonia to develop.

A speech/language pathologist conducts anevaluation to determine a person’s level ofsafety in swallowing. This evaluation can beenhanced with a special x-ray study, called avideo fluoroscopic swallowing study, whichcan help assess under what conditions swal-lowing may be safe and can offer direction forswallowing therapy. Evaluations and studiesalso will indicate if a feeding tube is necessary.

Many people are able to eat only under certainconditions. For example, they may toleratesmall amounts of a selected food consistency (asoft diet, for example) in a carefully controlledtherapy setting but may be at significant risk iffed under even slightly different conditions.Such patients may require tube feedings tomaintain or supplement adequate nutrition.

The feeding tube will maintain proper nutritionuntil a patient is able to swallow properlyagain. Several feeding tubes are common: thenasogastric (NG) tube, which does not requirea surgical procedure for use and is passedthrough 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 inserteddirectly into the stomach.

FEVER

If fever occurs, blood and urine tests and x-raysmay be needed to help find the cause. Feversare most often caused by urinary tract infectionor pneumonia and these can be treated withantibiotics.

FRACTURES

Many people who sustain traumatic braininjury also sustain fractures. Rehabilitative carecan assist in recovery from effects of theseinjuries and orthopedic care can continue in therehabilitation setting.

HETEROTOPIC OSSIFICATION

Many patients with severe brain injury developbone 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 ofmotion in the affected joints. Range of motiontherapy can help to alleviate the problem andmay be used in conjunction with medication. Inmore severe cases, surgery may be necessaryover the long term.

HYDROCEPHALUS

Cerebrospinal fluid (CSF) acts to cushion andprotect the brain and spinal cord from physicalimpact. CSF flows through a series of pathwaysaround the brain.

The amount of CSF in the skull must be main-tained at a relatively constant volume for thebrain to function normally. Hydrocephalus is acondition in which the production of CSFexceeds its absorption and results in enlarge-ment of cerebral ventricles. Hydrocephalus canbe caused by abnormalities in production orreabsorption of CSF or by obstruction of thecirculation of the fluid.

Page 19: COMA GUIDE FOR CAREGIVERS

PAGE 17

Hydrocephalus may be suspected if a personbegins to deteriorate in mental or physicalfunctioning or suddenly develops incontinence(i.e., cannot control urination). CT scans andsometimes additional tests may be required toestablish the diagnosis. In some cases, a smallcatheter or shunt may be required to drainexcess fluid from the brain.

INCONTINENCE OF BOWEL AND BLADDER

The inability to control bowel and bladderfunctions is common to people recoveringfrom a brain injury. Many managementtechniques can be used to improve function.For example, laxatives and suppositories canhelp regulate the emptying of the bowel.Taking the person to the bathroom at sched-uled times (time voiding) and using cathetersand external collecting devices can improvebladder management. Both functions alsomay be improved by changes in diet.

PROBLEMS OF INACTIVITY

The long period of inactivity that may be partof recovering from a brain injury can causecertain physical problems. General decondi-tioning is the generally decreased strength andstamina that a person may experience as aresult of extended bed rest. Individual exerciseprograms can help restore lost muscle strengthand physical endurance. Skin problems suchas pressure ulcers can develop after lying inone position for a long time. The best preven-tion is frequent inspection of the skin andshifting and repositioning. Blood clots, calleddeep vein thrombosis (DVT), may developespecially in the legs when patients havelimited mobility. Though the clots are notalways apparent, they may be accompanied bypain, warmth, and swelling. An additional riskis for a clot in the leg to break off and enter thelung (called a pulmonary embolus). Anti-coagulant medications frequently are pre-scribed to manage these conditions. In somepatients who may not tolerate anti-coagulants,a filter is sometimes placed in a large vein toprevent clots from going to the lungs.

SEIZURES

Seizures are common complications in peoplewith traumatic brain injury. The symptoms of aseizure can range from generalized shaking

and loss of consciousness, to a discrete episodeof altered attention, emotion, sensation,or movement.

Seizures are caused by an abnormal electricaldischarge by brain cells. The risk of seizures isgreater 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 seizuresare generally treated with anti-convulsantmedication for a period of years. Patientswithout late seizures, but at high risk, aresometimes treated with anti-convulsants forbriefer intervals.

SENSORIMOTOR EFFECTS

This term refers to the relationship betweenmovement and sensory perceptions. The braininterprets information sent by the senses, anddirects physical movement according to theneeds expressed by this information. Any ofseveral movement disorders can result if abrain injury interrupts the smooth operation ofthis process.

Different types and levels of paralysis canaffect different parts of the body and last forunpredictable periods of time. Hemiparesisis weakness on one side of the body; whenthis weakness is more severe, it is calledhemiplegia.

Motor control in general can decrease becausethe injury has affected the way the brain directsthe 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. Anothercommon deficit in motor controls is apraxia,the inability to carry out purposeful move-ments. For example, a person may have theability to lift an arm, but can only do it sponta-neously, not upon request. The instructionscannot be willfully communicated fromthe brain.

A person’s balance and coordination also maybe affected by a brain injury. Balance dependsupon vision, hearing, and position senseinformation reaching the brain and being

Page 20: COMA GUIDE FOR CAREGIVERS

PAGE 18

properly analyzed there. Any interruption inthese connections can disrupt balance. Poorcoordination can be caused by injury to thecerebellum or portions of the inner ear andtheir connections to the brain. Called ataxia,this condition can interfere with the perfor-mance of even the most basic movementsand tasks.

PROBLEM WITH MUSCLE TONE

AND RANGE OF MOTION

Muscle tone is frequently abnormal after abrain injury. Sometimes muscle tenseness mayincrease with movement. This is called spastic-ity. These changes in muscle tone can bepainful and can lead to decreased range ofmovement and abnormal posture. Forexample, the arms may be held tightly acrossthe chest and the legs may be held in a straight,rigid position.

Treatment for abnormal muscle tone includesexercises to normalize the tone, gain posturecontrol and improve flexibility. These mayinclude slow rocking, range-of-motion exer-cises, balance training, and serial casting (theapplication of casts to prevent deformity andgradually increase range of motion). Anti-spasticity medication, selected nerve blockinjections, and selected muscle injections mayalso be used. Orthopedic or neurosurgicalprocedures may be required in severe orchronic situations.

DYSARTHRIA

This term describes any of a variety of speechdifficulties caused by muscle weakness orparalysis. The problem could be located any-where in the mechanism of speech production:the muscles of the mouth, the passagewaybetween nose and mouth, the voice box(larynx), or the respiratory system. Dysarthriacauses slurred speech and an abnormalvoice quality.

VISUAL DEFICITS

Vision can be impaired in one eye, in both eyes,or on one side of the visual field (called visualfield cut or hemianopsia). Diplopia, or doublevision, is also common after brain injury and isusually due to nerve damage. An eye patchoften relieves initial discomfort and improve-

ment usually occurs over several months. Ifsymptoms persist, prism lenses or eye musclesurgery may be considered. Vision therapy mayalso be considered.

Often, people have visual-spatial difficulty thatis not due to nerve damage. This is calledvisual perceptual deficit and is caused whenthe brain has difficulty interpreting what isseen. These problems include unilateralsneglect, in which a person neglects itemslocated on one side or ignores one side of thebody, decreased depth perception, difficulty inperceiving how far away something is, anddiminished object recognition.

OTHER PERCEPTUAL DEFICITS

Because sensory information is processed in thebrain, any of the other senses of hearing, taste,smell, and touch may also be affected by abrain injury. The abilities to taste and smell areoften diminished and must be compensated for.Hearing itself or the quality of what is heard(auditory acuity) may diminish. Certainsensitivities may be heightened, includingsensitivity to touch (tactile defensiveness) andto movement (vestibular deficit). Even theperception of one’s own limbs, their connectionto the body and their relationship to the envi-ronment may be impaired (proprioceptivedisorder).

C. BEHAVIORAL EFFECTS OF ATRAUMATIC BRAIN INJURY

Two of the most striking problems manypeople with brain injury experience are a lackof insight about their condition and denialabout their condition. These problems canrange from complete denial of obviously severephysical impairments to underplaying theextent of cognitive deficits. As a result, patientsoften do not take their limitations into accountwhen planning future activities. Family mem-bers and rehabilitation staff need to have arealistic appraisal of the patient’s strengths andweaknesses so they can provide guidance forplanning and problem solving.

Page 21: COMA GUIDE FOR CAREGIVERS

D. COGNITIVE EFFECTS OF ATRAUMATIC BRAIN INJURY

ATTENTION AND CONCENTRATION

Patients in early recovery often can remaincompletely alert for only a brief period. Later, itmay be difficult for them to focus their atten-tion entirely or to stay with one project orconversation for a significant period withoutbecoming distracted. Patients can be distractedby their own emotions, thoughts, and physicalresponses or by any element in their environ-ment, such as voices, music, noises, or suddenchanges in the room. A related concern is aninability to turn one’s attention from onesubject to the next.

MEMORY

Memory impairment, or amnesia, is commonafter traumatic brain injury. There can still beislands of preserved memory during post-traumatic amnesia, but during this time there isusually a limited attention span. Precise assess-ment of how much actual memory loss hasoccurred is difficult. Patients in a confused stateoften will not remember things because of theirseverely impaired attention, but they mayexhibit good memory function once theirattention improves. The duration of the periodof post-traumatic amnesia often indicatesinjury severity.

Every person has different types of memory,and one aspect of memory can be affecteddifferently than another. Memory of things seen(visual memory) differs from memory of thingsheard (auditory memory), and a strength inone area can be used in therapy to help im-prove functional memory.

Short-term memory is the ability to recallthings occurring within a few seconds to a day.Long-term memory is the ability to recallthings occurring within a longer period ofweeks and months, and remote memory is theability to recall events that occurred manyyears ago.

Often, remote memory begins to return beforeshort-term or long-term memory. Functionallyspeaking, it is the ongoing ability to make new,day-to-day memories that is important. Manypatients with severe memory difficulty canrecall events from years ago, but cannot re-member if they had breakfast that day.

People who are confused or who misinterpretevents and statements often may offer re-sponses that appear made up. This behavior isa condition called confabulation. The person istrying to respond as well as possible to astatement or a situation that may not make anysense and is calling upon different and oftenunrelated memories to create their response.

It also is important to realize that a person maylearn something new and remember it, but notremember the experience of learning it. Re-search has indicated that some people withbrain injury learn information or motor skillstaught in a therapy session even though theymay not remember the session itself.

COMMUNICATION

A brain injury can greatly diminish a person’sability to understand language and communi-cate thoughts in return. Language processingmay be impaired and, early in recovery, aperson may have little or no understanding ofwords. This can be followed by a period inwhich some words or commands are knownand not others, or some words may be knownat one time and not at another. Later in recov-ery, a patient may not understand complicatedstatements and may need to interpret a state-ment before responding.

Aphasia is another type of communicationproblem in which a person can no longerconnect the correct word with a particularobject or find the words to express a particularthought. People who have difficulty under-standing have receptive aphasia; those withdifficulty saying/producing speech haveexpressive aphasia. Often, a person mayexperience both.

A similar problem is paraphasia, in which theindividual will substitute an incorrect wordthat may sound like the desired word or relateto its meaning in some way.

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

Perseveration, when a person repeats a verbalor physical response inappropriately, isalso common.

PAGE 19

Page 22: COMA GUIDE FOR CAREGIVERS

PAGE 20

WHO WILL HELPAFTER 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 onthe individual needs of the patient. Family and friends are importantmembers of the team.

PATIENT:The patient is the most important member ofthe team. Care will be planned based onhow the patient responds to treatment.

FAMILY AND FRIENDS:You provide emotional support to thepatient. Family and friends also provide thehealth care team with important facts aboutthe patient’s past history and can help watchfor changes. Other team members will alsoteach you activities that you can do to helpwith the recovery process. The importanceof family and friends to a person’s recovery

cannot be over-emphasized.

DOCTORS:Neurosurgery doctors are specialists that helpdetermine the type of brain injury and itstreatment. They may perform surgery on thebrain. They will work with other doctors if thepatient is in intensive care or has injuries toother parts of the body.

NURSES:Nurses check patient’s vitals (temperature,blood pressure, heart and breathing rate) andwatch for changes in strength and thinking.

Team Members

DOCTORS

NURSES

FAMILY ANDFRIENDS

PHYSICALTHERAPISTS

OCCUPATIONALTHERAPISTS

SOCIALWORKERSDOCTORS

PATIENT

SPEECHPATHOLOGISTS

NEUROPSYCHOLOGISTS

DIETICIANS &OTHER STAFF

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

Page 23: COMA GUIDE FOR CAREGIVERS

PAGE 21

They help with daily cares such as eating andbathing. Nurses also coordinate care among themembers of the health care team.

SOCIAL WORKERS:Social workers provide emotional support tohelp the patient and family adjust to being inthe hospital. They coordinate discharge plan-ning, referral to community resources, anddeal with questions related to insurance ordisability.

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 instructionin use of equipment such as walkers, canes, orwheelchairs.

OCCUPATIONAL THERAPISTS (OT):Occupational therapists evaluate the patient’sability to perform dressing, bathing, homemak-ing and activities that require memory andorganization. They provide treatment orequipment 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 guidetreatment. It will also help determine theamount of supervision that the patient needswhen they leave the hospital.

DIETICIANS:Dieticians assess nutritional needs. They workwith the patient and other team members tohelp the patient meet their nutritional goals.

RESPIRATORY THERAPISTS:Respiratory therapists assess the patient’srespiratory care, status, and treatment progress.

Services provided include:• oxygen therapy• aerosol medication therapy• ventilator management• pulmonary diagnostic procedures

In addition, respiratory therapists provideeducation to patients, family members, andhospital personnel and act as a resource to themedical staff for research and consultation.

OTHERS:There are many other staff members that maywork with brain injured patients and family.

These include:• Clergy• Activities Therapists• Patient Representatives• Child Life Therapists• Music Therapists• Vision Therapists• Vocational Rehabilitation

Page 24: COMA GUIDE FOR CAREGIVERS

PAGE 22

HOW WILL YOU REACT?When a friend or family member is hospitalized, it is normal to havemany emotional reactions. You may have these emotions at differenttimes. The emotions you may experience include:

PANIC AND FEAR

One of the first reactions you may have aftera family member suffers a brain injury ispanic and fear. Fears are intense becauseyou are worried the patient may not sur-vive. Until the patient becomes medicallystable, physical and emotional feelings ofpanic may continue. Some of your physicalsymptoms may be rapid breathing, inabilityto sleep, decreased appetite and upsetstomach. Some people may cryuncontrollably.

SHOCK AND DENIAL

You may feel that what is happening is notreal. You may notice things going on aroundyou, but have trouble remembering infor-mation and conversations or meetings withothers. You may also have a hard timeunderstanding the seriousness of the injurythat has occurred.

ANGER

Many people feel angry that they or theirloved ones are in this situation. This may bejustified. You may be angry with the patientfor putting themselves in a situation wherethey could be hurt. You may also be angrywith family members, friends, or othersinvolved in the accident. You may be upsetwith the health care team for not doing orsaying what you think is right. This is anormal reaction and it is okay to havethese feelings.

GUILT

Guilt is a very normal reaction during thistime. You may feel you could have donesomething to prevent the accident from hap-pening, even when this is far from true. Youmay also think about past events and personalexperiences with the patient that you wishcould have been different or better. If you arefeeling angry with the patient, you may alsofeel guilty about your anger. This too is anormal reaction. We encourage you to talkabout your feelings with someone close to youor a professional staff member.

ISOLATION

During this time you may feel distant fromothers. You may have a hard time relating toothers in this abnormal situation. You maythink that others will not understand. You mayalso think others are scared or disapprove ofyour feelings, and as a result isolate yourself.However, a crisis such as a brain injury is atime where it is helpful to accept comfort,support and assistance from others.

HOPE

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

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

Page 25: COMA GUIDE FOR CAREGIVERS

PAGE 23

Brain injury is a family matter and it affectsfamilies in many different ways. Families canundergo many changes as their loved oneprogresses through recovery. During theinitial crisis period, there may have been notime to focus on anything other than theinjured relative’s life and problems—yet thehealth of each family member is important tothe overall health of the family. Parents,spouses, children, and siblings can all gothrough difficult reactions unique to theirrelationship to the injured person. If a familybalance is not restored that considers eachperson’s needs, family members can experi-ence isolation, poor health, prolonged fear,and depression.

Each family has its own style of expressingfeelings, dividing chores, and solving prob-lems. All of this may change when a familymember acquires a serious disability, particu-larly a brain injury. It is common that inaddition to feeling sad about the lovedone’s injury, family members feel a sense ofloss for how the family itself has beenaltered. Family members may relate differ-ently to one another and have differentdemands put on them.

An especially painful change involved familyroles. Families operate like a small organiza-tion, providing food, shelter, comfort, sup-port, and love. Different people in the familyorganization have different roles to play, and

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

FAMILY ISSUES: COPING WITH RECOVERY

those roles go beyond just the prescribeddefinitions of mother and father, son anddaughter. For example, the roles can includewho listens to emotional problems, who sendsout the holiday cards, who takes care of thehouse repairs. If one family member becomesunavailable due to an injury, the entire systemusually changes. People naturally pitch in andhelp during a crisis, taking on new and addi-tional roles. There can be increased stress onfamily members as they do things they neverthought they would or could do. But once afamily member has a disability, pitching intemporarily usually leads to a permanent shiftin responsibilities. Often, people have emo-tional reactions to such permanent role changesthat include resistance, sadness, and even guiltat replacing a loved one in a particular func-tion. There are two essential elements forcoping with the shifts in roles: openly express-ing feelings and enlisting support.

First, family members need to discuss thefeelings they have about everything that hashappened. For example, they may feel sadnessand anger about the accident or illness itselfand similar feelings about the changes theevent has necessitated. Whatever the exactfeelings are—there are no right and wrongones—expressing them openly and directly isextremely important.

Second, the family needs to rally whateverresources it can to deal with strong feelings and

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

Page 26: COMA GUIDE FOR CAREGIVERS

PAGE 24

increased demands. The recovery process canbe long and stressful. Family members need toassemble a support system of friends andrelatives that will help relieve the tension thatnaturally builds.

Many times families don’t want to ask for help.They don’t want to impose on others or theyare embarrassed to be in a needy position.Some people may think, too, that if they mustask for help, then the situation must be veryserious. It is important to remember whenthese feelings arise that social support can bedrawn from many people and many types oforganizations. Extended family, neighbors, andmembers of your religious community oftenare waiting to be asked for help. In addition,support is available from institutions andcommunity groups through hospital staffmembers, psychologists, and establishedsupport groups.

Every family will react differently to the crisisand will find its own means of coping. You areencouraged to use your intuition, participatefully in the rehab program, make suggestions,and ask questions. The more information youhave about your family member’s recovery, thebetter able you will be to handle the changesthat can arise during the process.

The hope is that individuals who haveexperienced a brain injury or stroke will returnhome as independent as possible, with the helpof the people who love them. In this way,families can be the most important part of thetreatment team, as they will often continue thecare of the recovering person at home. We’vecompiled the following list of suggestions foryou to consider.

A. INTERACTING WITHTHE INJURED PERSON

• The personality changes that can accom-pany a brain injury or stroke may be moredifficult to cope with than any physicaldisability. If your family member behavesinappropriately, or in an unfamiliar way, itmay be the result of his or her injury. Youneed not feel embarrassed about behaviorthat naturally occurs during the recoveryprocess.

• Information may need to be presented toyour injured family member as simply aspossible. Use straightforward language anddirect, uncomplicated gestures andexpressions.

• Your family member’s emotional reactionsmay not be what you would normallyexpect. They may be heightened or they maybe absent. Often the types of reactionsdisplayed may be best explained by thenature of the injury and the stage ofrecovery at which your loved one may becurrently functioning. (See page 10 for theRancho Scale).

• A person recovering from a brain injury orstroke sometimes has little capacity to fullygrasp the extent of his or her deficits. Donot assume that your family member feelsas you would if you were in his or hersituation. Individuals are often unaware oftheir problems and are not depressed whenwe would expect them to be. The only wayto know how they feel is to ask them. Evenbehaviors such as laughing or crying do notnecessarily mean that the patient is happy orsad. Their behavior can be disconnectedfrom their feelings. As your family memberimproves, however, so does his or herinsight into losses or changes. This is thetime when he or she will most need yoursupport and the help of the team.

• People recovering from brain injury or strokeoften have a diminished capacity for empa-thy. They are often incapable of seeing anypoint of view other than their own. Be awarethat your family member may not seem asmature as he or she once was, but respond-ing to him or her as one adult to another isstill important.

• Try to be objective about your familymember’s capabilities. Patients often denytheir disabilities and try to influence yourpoint of view about them. You can makeyour assessments based on the informationthat you have.

Page 27: COMA GUIDE FOR CAREGIVERS

PAGE 25

• Your family member will benefit fromstructure. Help him or her work throughproblems by providing input likely to lead inthe 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 senseof hope. While it is vital to remain realistic inyour goals, you do not need to give up onfuture possibilities.

B. GENERAL GOALS• Take care of yourself and your family — not

just your injured relative. It will not help himor her if you become exhausted. Do not beconcerned that asking staff members for helpfor yourself will limit our attention to yourrelative.

• Pace yourself. This process can be a longone. Do not expend all of your energy in theearly stages because you will need it in themonths ahead.

• Remember that dealing with a brain injuryor stroke is difficult and no one has all theanswers. Common sense, however, willcarry you a long way. Counseling can alsohelp 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 abrain injury or stroke.

• Write important info down in a journal ornotebook. Keep records and info together ina file for easy reference.

• Remember that every person is unique andso an injury to the brain will have uniqueeffects. Try not to compare your family

member’s progress to that of others in therehabilitation program. The treatment teamindividualizes the care for each person, soyour family member is receiving the mostappropriate treatment. One therapist recom-mended, ‘Don’t look back one day andcompare your loved one’s accomplishments;look back one week and you will really see adifference.’

• Acknowledge all of your feelings. You maynot understand why you feel as you do atcertain times, but it is important to recognizeeven those that seem odd or unreasonable.Sharing them with other relatives andfriends may also provide some relief; theymay be feeling the same way.

• Holding a family get-together, particularlyone with dependent children, can be verydifficult. Try to appraise the situation ashonestly as possible. If you are under stress,turn to professionals for help.

• Try to maintain your normal contacts. Stay intouch with relatives and friends and makeplans to do recreational activities outside ofthe hospital. Such outings will help to keepyou connected to the community.

• Maintain a sense of humor. A sense of humorhas a healing influence. Once a patient’scondition stabilizes and improves, familymembers find their ability to laugh returns.They find that laughter helps them as well asthe patient.

• Every person in coma will react in a uniqueway. Some persons with a coma experiencecomplete recovery and others do not. Al-ways be hopeful that your loved one willcome out of their coma.

• Join a brain injury support group. Contactthe Brain Injury Association of DE at1-800-411-0505 for dates and locations.

Page 28: COMA GUIDE FOR CAREGIVERS

PAGE 26

HOW CAN YOU HELP WITH RECOVERY?

The family and friends of a person with a brain injury are importantmembers of the team. Friends of those with brain injuries may find ituncomfortable to visit when the patient is confused or agitated.Honest explanations from family members may help them continueto offer the attention and support that is so helpful to patients.Sharing this guide is another way to help them understand. Thefollowing is a list of suggestions that correspond with the stages ofrecovery.

UNRESPONSIVE STAGE

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

• When speaking to the patient assumethey understand what you are saying.Speak in a comforting, positive andfamiliar way.

• Speak clearly and slowly about familiarpeople and memories.

• When visitors are present, focus on thepatient. Keep the number of visitors to 1 or2 people at a time. Visits should be short.Other distractions (TV, radio) should beturned off when visiting.

• Provide the patient with pictures andpersonal items that are comforting andfamiliar to them (use poster/bulletinboard).

• The nurses and therapists may encourageyou to assist in care of the patient. This

includes: grooming, hair care, shaving,applying skin lotion, gently stretching andpositioning patient’s arms and legs. If youdon’t feel comfortable with these activities,that is okay. The staff will understand.

EARLY RESPONSES

At this stage the patient is beginning to re-spond to people and hospital surroundings.The responses may range from turning towarda familiar voice to moving an arm or leg at thestaff’s request. The goal is to increase theconsistency of responses.

• There may be a delayed response time whenasking the patient to move, speak, or payattention. Always wait 1-2 minutes for therequested response. Repeat your requestonly a couple of times during this timeperiod.

• Be aware that the patient’s attention spanmay only be 5-10 minutes before fatigue andfrustration set in.

• Allow for rest periods. Turn off the TV,music, and lights, and limit visitors. Thepatient can become stressed by too muchnoise, light or stimulation.

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

Page 29: COMA GUIDE FOR CAREGIVERS

PAGE 27

• Continue with suggestions listed in theunresponsive section.

AGITATED AND CONFUSED RESPONSES

During this stage, things are confusing. Thepatient may begin to remember past events butmay be unsure of surroundings and the reasonfor hospitalization. The goal is to help thepatient become oriented and to continue totreat their physical needs.

• Provide one activity at a time and expect thepatient to pay attention for only shortperiods. Keeping the noise level low helpsthe patient focus.

• The patient may repeat a word, phrase, oractivity over and over. Try to interest thepatient in a different activity.

• Socially unacceptable behavior may occur atthis level. This is common. Calmly tell thepatient the behavior is not appropriate.

• Provide visual as well as verbal informationabout the patient’s surroundings to assistwith orientation. Remembering informationfrom one time to another is difficult. It maybe helpful to provide cues for the patientsuch 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 withsupervision to decrease frustration.

HIGHER LEVEL RESPONSES

At this stage patients are able to take part intheir daily routine with help for problemsolving, making judgments, and decisions.Most of the suggestions from the previousstage continue to apply here. The goal is todecrease the amount of supervision neededand increase independence. Here are a fewadditional suggestions for this stage.

• Assist with making the environment safe.Safety decisions may still be difficult for thepatient to make.

• Discuss with the patient decisions that he orshe makes. Provide praise for safe decisionsand a calm explanation for unsafe decisions.Learning is still difficult.

• Encourage the use of a memory and datebook to help with appointments anddaily routines.

• Encourage brief rest periods because thepatient will continue to need more rest.

• Check with the health care team on activitiesthat may be completed with or withoutsupervision. These activities may includework or school re-entry, taking medications,driving, or managing money.

Page 30: COMA GUIDE FOR CAREGIVERS

PAGE 28

Reprinted with permission from The Brain Injury Assn., Inc. website at www.bia.org

TREATMENT AND REHABILITATION

MODELS OF REHABILITATION

In the past, rehabilitation services for peoplewith brain injury were largely provided in a“medical model,” located in a medicalfacility 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 moreoptions are available than ever before.Rehabilitation service delivery and fundingare changing rapidly as managed carecontinues 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 CareUnit. At this point, rehabilitation is generallypreventive in nature. Range of motion,bowel and bladder hygiene (i.e. initiation ofregular bowel program and removingindwelling catheters), prevention of pressuresores, and orientation are all very important,right from the beginning. Frequently, reha-bilitation activities initiated in the ICU canreduce complications and sometimes, thelength of hospitalization.

• Acute Rehabilitation: Once a person ismedically stable, transfer to an acute reha-bilitation facility often occurs. There, he orshe will spend several hours a day in astructured rehabilitation program. Thisprogram 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 programsshould be individualized, catering to each person’s unique needs. Just as notwo people are exactly alike, no two brain injuries are exactly alike. Theperson with a brain injury and his or her family should always be the mostimportant members of the treatment team. Cultural, religious, social andeconomic 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’srelearning processes so that an individual recovers as quickly and effi-ciently as possible. Rehabilitation also involves learning new ways tocompensate 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 asknowledge of the brain and it’s functions increases.

Page 31: COMA GUIDE FOR CAREGIVERS

PAGE 29

sionals with training and experience in braininjury rehabilitation. Additional staff sup-port the brain injury rehabilitation team’sefforts, and often includes respiratorytherapy, pharmacy, lab, nuclear medicineand radiology and even housekeeping,dietary and central supply.

• “Subacute” Rehabilitation: People who areminimally aroused for a prolonged periodoften 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 avariety of settings, but is often in a skillednursing facility or nursing home. It is impor-tant to note that the services provided bysubacute programs vary widely, as there isno generally accepted definition of subacuteservices at this time.

• It is important to recognize that “moretherapy” does not make a person “better”,but that “appropriate” therapy does. Sub-acute rehabilitation programs require thesame appropriately trained professionals asacute rehabilitation programs do. The goalsof sub-acute rehabilitation should includeminimizing morbidity, maintaining func-tional positioning, hygiene, nutrition, andmedication management, as well as provid-ing support for the person with a braininjury and his or her family. Sub-acuterehabilitation programs may also be de-signed for persons who have made progressin the acute rehabilitation setting and are stillprogressing, but are not making rapidfunctional gains.

• Day Treatment/Day Rehab: Day rehab(sometimes called “Day Hospital”) providesintensive rehabilitation in a structuredsetting during the day and allows the personwith a brain injury to return home to theirfamily at night. The treatment team is oftenmade up of a variety of trained rehabilitationprofessionals.

COMMUNITY-BASED REHABILITATION

• Out-patient Facilities: Following acuterehabilitation or sub-acute rehabilitation, aperson with a brain injury may continue toreceive outpatient treatment in specific areas(i.e. ongoing speech pathology to continue towork on language and cognition, oroccupational therapy to work on daily livingskills, etc.). Often, this treatment can also beprovided in the home by a home-healthagency.

• Home-based Rehabilitation: There are a fewrehabilitation companies which focus onproviding acute rehabilitation within thehome, or community setting. Once medicallystable, some persons with a brain injury maybe able to participate in such a program, ifthere is such a program in their community.

• Community Re-entry: Community re-entryprograms generally focus on developinghigher level motor and cognitive skills inorder to prepare the person with a braininjury to return to independent living andpotentially to work. Treatment may focus onsafety in the community, interacting withothers, initiation and goal setting and moneymanagement skills. Vocational evaluationand training may also be a component of thistype of program. Community Re-entryprograms generally run for part or all of theday, with participants returning home tosleep and be with their families.

• Independent Living Programs: IndependentLiving programs provide housing for per-sons with brain injury, with the goal ofregaining the ability to live as independentlyas possible. Usually, independent livingprograms will have several different levels,for people requiring more assistance, tothose who are living independently andbeing monitored. In addition to physical,occupational, speech and recreation thera-pists, these programs usually have life skillstechnicians, who assist the person with abrain injury towards independence.

Page 32: COMA GUIDE FOR CAREGIVERS

PAGE 30

FINANCIAL ASSISTANCE

The following resources may offer assistance:

Brain injury is a long term illness that continues long after hospital discharge. As aresult, 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 beidentified for services after discharge. Social Security Disability or Medicaid maypay for some of the services needed. Most people have not planned ahead and willneed 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 theirdoctor’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 eligibleelderly and disabled individuals. Call theSocial Security Administration at 1-800-SSA-1213, from 7 a.m. to 7 p.m., Mondaythrough Friday. The lines are busiest earlyin the week and early in the month. If youhave a touch tone phone, recorded infor-mation and services are available 24 hoursa day, including weekends and holidays.

SUPPLEMENTAL SECURITY INCOME (SSI) -supplements Social Security payments forindividuals who have certain income andasset levels. SSI is administered by theSocial Security Administration.Call 1-800-SSA-1213.

MEDICARE -is a federal health insurance program forthose who receive Social Security benefits.Eligible individuals include those who are 65and older, people of any age with permanentkidney failure and disabled people under age65 who have received Social Securitydisability benefits for at least 24 months.Call 1-800-SSA-1213.

MEDICAID -provides health insurance for eligible lowincome people who are elderly, blind, ordisabled as well as for certain groups ofchildren. Services are coordinated by stategovernment through Delaware Health andSocial Services Division of Social Services. Call1-800-372-2022 in Delaware.

Page 33: COMA GUIDE FOR CAREGIVERS

PAGE 31

VETERANS’ BENEFITS -eligible veterans and their dependents mayreceive treatment at a V.A. Medical Center.Treatment for non-service connected condi-tions may be available, based on the veteran’sfinancial need. Call 1-800-827-1000.

If you have life insurance and have a lifethreatening illness you may be able to usethose funds to pay for medical or otherexpenses. Call the Viatical Association ofAmerica at 1-800-842-9811.

Hill-Burton is a program through whichhospitals receive construction funds from thefederal government. Hospitals that receiveHill-Burton funds are required by law toprovide some services to people who cannotafford to pay for their hospitalization. Formore information about hospitals covered bythe Hill-Burton Act, call 1-800-638-0742.

There are several agencies that offer lowercost prescription drugs directly from thedrug manufacturer for people who qualify.These companies work with the patient’sdoctors. The internet address for thesecompanies are www.needymeds.com andwww.themedicineprogram.com. Forinformation about The Medicine Programcall 1-573-778-1118.

There are private sources of funds to help youpay your medical bills. Many disease anddisability related, civic, social welfare andreligious organizations have funds availablefor at least emergency or short-term medicalneeds. For a list of local civic groups, such asthe Jaycees, Elks, and Moose Lodges, see theThursday’s Crossroads section and theMonday’s Business Journal section of theWilmington News Journal. Sometimes, familiesask their local newspapers to feature an articleabout their family’s situation and ask readers todonate money toward the cost of a particulardevice or piece of equipment. Most requestswill need to be made in writing and you mayhave to schedule an appointment to speak tothe funding source.

References books, such as Financial Aid forthe Disabled and their Families, published byReference Service Press will be available inlibraries, in the grants collection at the Uni-versity of Delaware Library, and throughlocal social service agencies. These bookslist local and national sources of possiblefunding. In Delaware, contact the DelawareCommunity Foundation at 302-571-8004 topurchase a copy of the yearly Directory ofDelaware Grantmakers.

Page 34: COMA GUIDE FOR CAREGIVERS

A nursing home is one option for post-hospital care you may want to explore. This checklist isdesigned to help you evaluate and compare the nursing homes that you visit. It would be agood idea to make several copies of this checklist, so that you will have a new checklist foreach home you visit. After you have completed checklists on all the nursing homes you planon visiting, compare your checklists. Comparisons will be helpful in selecting the nursinghomes that might be the best choice for you. Call the Division of Services for Aging andAdults with Physical Disabilities (DSAAPD) for a list of licensed nursing homes in Delaware at453-3820 or 1-800-223-9074.

HOW TO EVALUATEA NURSING HOME

NURSING HOME CHECKLISTPART 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

Page 35: COMA GUIDE FOR CAREGIVERS

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 theHealth Care Financing Administration’s booklet, The Guide to Choosing a Nursing Home. Thisbooklet can be obtained by calling (800) 638-6833.

Page 36: COMA GUIDE FOR CAREGIVERS

PAGE 34

TBI STATISTICS AND FACTS

GENERAL• There are 2 million Traumatic Brain

Injuries each year (One every 15seconds).

• 500,000 of these injuries require hospitaladmission.

• Every 5 minutes someone dies from ahead 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 twohours of hospitalization.

• Every 5 minutes someone becomespermanently disabled due to a headinjury.

• 70,000 - 90,000 of those who survive willhave lifelong disabilities.

• 2,000 more will live in a persistentvegetative state.

• Over 50% of those who sustain a BrainInjury have been intoxicated at the timeof injury. The cost of Traumatic BrainInjuries in the U.S. is over $48 Billioneach 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 andrehabilitation.

• The costs of a severe brain injury oftenexceed 4 million dollars.

• A majority of head injury survivors areunder the age of 30.

• 2/3 of those who survive will live anormal life span, but will require lifelong 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 atraumatic brain injury.

• A person does not need to strike their headto sustain traumatic brain injury. (eg.,whiplash, shaken baby syndrome.)

• Even mild traumatic brain injuries can causecognitive impairments serious enough toimpact a person’s ability to enjoy life and tobe able to work and earn a living.

• People who sustain a brain injury are 3times as likely to sustain a (second) braininjury.

• Those who sustain a second brain injury are8 times as likely to sustain a (third) braininjury.

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 diseasescombined.

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 severeenough to be hospitalized.

• 1 million children sustain a head injury eachyear.

• 165,000 children will be hospitalized due toa head injury.

• 1 in 10 of those children hospitalized willsuffer moderate to severe impairments.

• Traumatic brain injury is the leading causeof death for children and young adults.

Page 37: COMA GUIDE FOR CAREGIVERS

REGIONAL COMA AND BRAININJURY REHABILITATIONPROGRAMS

DELAWAREChristiana Care System, Center forRehabilitation at Wilmington HospitalWilmington

Admissions Information:Usually take Rancho Scale Level 4 and aboveNo Coma Stimulation Program

Call 302-428-6600

St. Francis Hospital Rehabilitation CenterWilmington

Admissions Information:Usually take Rancho Scale Level 5 and aboveNo Coma Stimulation Program

Call: 302-421-4541

Milford Hospital Rehabilitation ProgramMilfordAdmissions Information:

Usually take Rancho 5 and above andevaluate on individual basis

Call 302-424-5962 or 5971

PENNSYLVANIABryn Mawr RehabilitationMalvern

Admissions Information:Usually take Rancho Scale Level 2 and above

Call 610-251-5411

Moss Rehabilitation HospitalPhiladelphia

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

Call 215-456-9700

Magee Rehabilitation HospitalPhiladelphia

Admissions Information:Usually take Rancho Scale Level 1 and aboveComa Stimulation ProgramSpecialized Spinal Cord Injury ProgramNew Contract with Blue Cross/Blue Shieldof DE

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

NEW JERSEYMediplex RehabilitationCherry Hill, New Jersey

Admissions Information:Usually take Rancho Scale Level 1and aboveComa Stimulation Program on acase-by-case basisTake Rancho Scale Level and above

Call 609-342-7600

MARYLANDBryn Mawr RehabilitationBaltimore

Admissions Information:Usually take Rancho Scale Level 2 and aboveNo Coma Stimulation Program

Call 410-225-8522

Kernan Rehab and Deaton SpecialtyRehabilitationBaltimoreAdmissions Information:

Usually take Rancho Scale Level 1 and aboveComa Stimulation Program

Call Kernan @ 410-328-8680 orDeaton @ 410-328-1513

PAGE 35

Page 38: COMA GUIDE FOR CAREGIVERS

PAGE 36

DELAWARE STATEGOVERNMENT RESOURCES

STATE DEPARTMENT OF EDUCATION:SPECIAL EDUCATIONDirectorExceptional Children and Early Childhood

GroupDepartment of EducationP.O. Box 1402Dover, DE 19903(302) 739-5471

PROGRAMS FOR CHILDREN WITHDISABILITIES: AGES 3 THROUGH 5619 CoordinatorExceptional Children and Early Childhood

GroupDepartment of EducationP.O. Box 1402Dover, DE 19903(302) 739-4667

PROGRAMS FOR INFANTS ANDTODDLERS WITH DISABILITIES:AGES BIRTH THROUGH 2Part C CoordinatorManagement Svcs. Division Health and

Social Services2nd Floor, Room 2041901 North DuPont HighwayNew Castle, DE 19720(302) 577-4647

STATE DIVISION OF VOCATIONALREHABILITATIONDirector Delaware Division of Vocational

RehabilitationDept. of Labor4425 North Market StreetP. O. Box 9969Wilmington, DE 19809-0969(302) 761-8275; (302) 761-8336 (TTY)

OFFICE OF STATE COORDINATOR OFVOCATIONAL EDUCATION FORSTUDENTS WITH DISABILITIESEducation AssociateVocational Technology Education & School toWork TransitionDepartment of EducationP. O. Box 1402Dover, DE 19903(302) 739-4638

STATE MENTAL HEALTH AGENCYDirectorDivision of Alcoholism, Drug Abuse &

Mental HealthDepartment of Health & Social Services1901 North DuPont HighwayNew Castle, DE 19720(302) 577-4461

STATE MENTAL HEALTHREPRESENTATIVE FOR CHILDRENDirectorDivision of Child Mental Health ServicesDepartment of Services for Children, Youth,

and Their Families1825 Faulkland RoadWilmington, DE 19805-1195(302) 633-2600

STATE MENTAL RETARDATIONPROGRAMDirectorDivision of Mental RetardationDepartment of Health & Social ServicesJesse Cooper BuildingP.O. Box 637/Federal StreetDover, DE 19903(302) 739-4386

Page 39: COMA GUIDE FOR CAREGIVERS

PAGE 37

RESOURCE GUIDES

A Guide To Federal Programs For PeopleWith DisabilitiesNational Academy for State Health Policy50 Monument Square, Suite 502Portland, ME 04101(207) 8574-6524

Consumer Resource ManualList of resources & support groups for peoplewith a loss of visionDelaware Health and Social ServicesDivision for the Visually Impaired305 West 8th StreetWilmington, DE 19801Phone: (302) 577-3333 Ext. 25 or(302) 577-4730 (V or TTY)

Delaware Assistive TechnologyResource GuideDelaware Assistive Technology InitiativeApplied Science & Engineering LaboratoriesUniversity of Delaware/A.I. DuPont

Institute1600 Rockland RoadWilmington, DE 19899(302) 651-6790

Delaware Central Directory of Services ForYoung Children With Special NeedsList of resources and services for children withSpecial needs from 0 to 3 years of agePart H - Birth to Three ProgramDelaware Health and Social ServicesDivision of Management Services1901 N. DuPont HighwayNew Castle, DE 19720(302) 577-4643

Directory of Human Services For DelawareDelaware Health and Social ServicesDivision of State Service Centers1901 North DuPont HighwayNew Castle, DE 19720(302) 577-6420

Guide To Programs And ServicesDepartment of Services for Children, Youth

and their FamiliesOffice of PreventionDelaware Youth and Family Center1825 Faulkland RoadWilmington, DE 19805(302) 633-2704

Guide To Services For People WithDisabilities In DelawareDelaware Health and Social ServicesDivision of Services for Aging and Adults

with Physical Disabilities1901 North DuPont HighwayNew Castle, DE 19720(302) 577-4791

The Legal Handbook for Older DelawareansCommunity Legal Aid Society913 Washington StreetWilmington, DE 19801(302) 575-0660

Parent Education and Support InventoryList of parent education and support groupsThe Parent Education Committee for

the FamilyServices Cabinet CouncilA.I. DuPont Institute1600 Rockland RoadP.O. Box 269Wilmington, DE 19899(302) 651-4560

Services GuideList of mental health services for childrenDelaware Health and Social ServicesDivision of Child Mental Health Services1825 Faulkland RoadWilmington, DE 19805(302) 633-2599

Page 40: COMA GUIDE FOR CAREGIVERS

PAGE 38

Coma Recovery Association Inc.100 East Old Country Rd.Suite 9Mineola, New York 11501(516) 746-7714http://www.comarecovery.org

Forget Me Not (FMN)http://www.forget-me-not.org

Head Injury HotlineP.O. Box 84151Seattle, WA 98124(206) 621-8558e-mail: [email protected]://www.headinjury.com/brain

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

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

NOVA Onlinehttp://www.pbs.org/wgbh/nova/coma/resources/html

TBI General Resourceshttp://teach.virginia.edu/go/cise/ose/categories/tbi.html#res

The Perspectives Networkhttp://www.tbi.org

Who is Waiting.comBrain Injury Information Page(800) 992-9447http://www.waiting.com

COMA RESOURCE LIST

Page 41: COMA GUIDE FOR CAREGIVERS

PAGE 39

BRAIN INJURY PRINT RESOURCES

STATE BRAIN INJURY ASSOCIATION RESOURCES

Head Injury: A Family Guide(Available in Spanish)Brain Injury Assc. of Florida201 East Sample RoadPompano Beach, FL 33064

Living Well After Brain Injury(Survivors share their perspectives/strate-gies)Brain Injury Assc. of Minnesota43 Main Street SE, S-135Minneapolis, MN 55414

Making Life Work After a Head InjuryBrain Injury Assc. of Florida201 East Sample RoadPompano Beach, FL 33064

Self Advocacy for Independent LivingBrain Injury Assc. of Colorado6825 E. Tennessee Avenue, #405Denver, CO 80224

TBI Manual: What You Need to KnowBIA of Michigan8137 W. Grand River, Suite ABrighton, MI 48116

When A Parent Has a Brain Injury:Sons and Daughters Speak Outby Marilyn Lash, M.S.W.Massachusetts Head Injury Assc.484 Main Street, #325Worcester, MA 01608

Why Did It Happen on a School Day:My Family’s Experience with Brain InjuryBrain Injury Association105 North Alfred StreetAlexandria, VA 22314

You, Me, Community: Connecting the PiecesConnecticut Traumatic Brain Injury Assc.1800 Silas Deane Hwy., Suite 224Rocky 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 Backby E. A. Freeman, MB. BS, FRCS (Ed.)ISBN: 0911378936Sheridan House Inc.145 Palisade StreetDobbs Ferry, NY 10522

GENERAL

Coming Home: Discharge Manual for Familiesof Persons w/a Brain InjuryDana S. DeBoskey, Ph.D., EditorISBN: 1882855345HDI PublishersP.O. Box 131401Houston, TX 77219

Coping with Mild Traumatic Brain InjuryDiane Roberts Stoler, Ed.D. (Survivor)ISBN: 0895297914Avery Publishing Group120 Old BroadwayGarden City Park, NY 11040

Educating Families: A Guide to Medical,Cognitive & Social IssuesBy D. DeBoskey, J. Hecht and C. CalubISBN: 083420231XAspen Publishers, Inc.200 Orchard Ridge DriveGaithersburg, MD 20878

Living With Head InjuryM.D. van den Broek, W. Schady & M.J. CoyneISBN: 0719041899Manchester University PressFifth Avenue, Room 400New York, NJ 10010

Page 42: COMA GUIDE FOR CAREGIVERS

CHILDREN’S ISSUES

Children with Acquired Brain InjuryEdited by: G. Singer, A. Glang & J. WilliamsISBN: 1557662339Paul H. Brookes Publishing Co.P.O. Box 10624Baltimore, MD 21285

Pediatric Traumatic Brain Injury: ProactiveInterventionby Jean L. Blosser and Roberta DePompeiISBN: 1565931688Singular Publishing Group, Inc.4284 - 41st StreetSan Diego, CA 92105-1197

Teaching Your Child The Language of SocialSuccessby M. Duke PhD, S. Nowicki PhD, E. Martin MEdISBN: 1561451266Peachtree Publishers, Ltd.494 Armour Circle NEAtlanta, GA 30324

When Your Child is Seriously Injured: TheEmotional Impact on FamiliesWhen Your Child Goes to School After an InjuryExceptional ParentDept ML, P.O. Box 8045Brick, NJ 08723

WRITTEN BY SURVIVORS OR FAMILY MEMBERS

Blessed Tragedyby Karen Wells (Survivor)ISBN: 0964940175Rhodes & Easton121 E. Front Street, 4th FloorTraverse City, MI 49684

Brainlash: Maximize Your Recovery fromMild Brain Injuryby Gail L. Denton, Ph.D. (Survivor)Attention Span BooksP.O. Box 788Niwot, CO 80544-0788

Crushed But Not Destroyedby Sharon Longenecker (Spouse)ISBN: 0961424400Sun Ray Publishing Co.27885 S. E. Sun Ray DriveBoring, OR 97009

In Search of Wingsby Beverly Bryant (Survivor)ISBN: 1882332008Wings Publishing1 Clifford CourtSouth Paris, ME 04281

PAGE 40

Page 43: COMA GUIDE FOR CAREGIVERS

PAGE 41

GLOSSARY

TERMS

ANOSMIA - Loss of the sense of smell.

ANOXIA - A lack of oxygen. Brain cells needoxygen to exist. When blood flow to thebrain is reduced or when oxygen in theblood is low, brain cells are damaged.

BRAIN SCAN - An imaging technique inwhich a radioactive liquid is injected intothe blood stream so that pictures of thebrain can reveal tumors, blood clots, hemor-rhages, or abnormal anatomy.

BRAIN INJURY - Damage to living brain tissuecaused by external mechanical force or non-traumatic causes such as tumors, strokes,infections, or other biological events.

CATHETER - A flexible plastic tube of varyingsizes utilized for withdrawing fluids from orintroducing fluids into a cavity of the body.This tubing is also used in specializedmedical procedures.

CEREBROSPINAL FLUID - The liquid whichfills the ventricles of the brain and sur-rounds the brain and spinal cord.

CLOSED HEAD INJURY - Trauma to the headthat does not penetrate or fracture the skull,but damaged the brain.

COGNITION - The conscious process of themind by which we are aware of thoughtsand perception, including all aspects ofperceiving, thinking, and remembering.

COMA - A state of unconsciousness fromwhich the patient cannot be aroused, evenby powerful stimulation.

CT SCAN/COMPUTERIZED TOMOGRAPHY -A series of computerized X rays of the brainat various levels to reveal its structure. Thisprocedure shows the more obvious changessuch as a hematoma.

DECUBITUS - A bed sore or discolored, openarea of skin damaged by pressure. Commonareas to this breakdown of skin includebuttocks, hips, shoulder areas, ankles, heels,and elbows.

DEFICIT - A lacking or deficiency in the amountor quality of functioning.

DIPLOPIA - Double vision; the perception of twoimages of a single object.

EEG/ELECTROENCEPHALOGRAM - Record-ing electrical activity of the brain by position-ing electrodes on the scalp or on in the brainitself.

ECG/EKG ELECTROCARDIOGRAM - Moni-toring heart rate and rhythm by positioningelectrode pads on the patient’s chest, whichare connected to a monitor.

EYE TAPE - Tape used to close the eyes of apatient who is unable to blink. Blinking isimportant to keep the eyes moist. This naturalreflex is lost in patients who are unresponsivebut have open eyes. Eye drops may be utilizedand the eye tape would be used to keep themclosed.

HALO - A metal ring used for patients withupper spinal cord injuries which surrounds orencircles the patient’s head, allowing forproper alignment of the neck and spinalcolumn. In order to prevent further injury tothe spinal cord it is important that the patientwith a broken spine remain still.

HOSPICE - Home health care choice whenrecovery is not possible, focusing on care, notcure, including pain and symptom manage-ment and emotional support.

JEJUNOSTOMY TUBE (J-TUBE) - A type offeeding tube surgically inserted into the smallintestine.

MRI/MAGNETIC RESONANCE IMAGING - Adiagnostic procedure that uses magnetic fieldsto create pictures of the brain’s soft tissue.MRI can provide a more detailed picture thanthe CT scan.

ORTHOSIS - Splint or brace used to support,align, and improve function of movable partsof the body.

Page 44: COMA GUIDE FOR CAREGIVERS

PERSISTENT VEGETATIVE STATE - A condi-tion in which the patient is unable to speak orfollow simple commands and does not re-spond in any psychologically meaningful way.The transition from coma to a vegetativecondition reflects changes from a period of noresponse to the internal environment, otherthan reflexively, to a state of wakefulness butwith no indication of awareness. Normal levelsof blood pressure and respiration are automati-cally maintained.

PLATEAU - A temporary or more permanentleveling off in the recovery or rehabilitationprocess.

RT/RANDOM MOVEMENT - An action ofmoving 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 ofthe environment for information. Used inreading, driving, and other daily activities.

SEIZURE - An uncontrolled discharge of nervecells which may spread to other cells through-out the brain. The sudden attack is usuallymomentary, but may be accompanied by lossof bowel and bladder control, tremors, and/oraggressiveness.

SENSORY INTEGRATION - Interaction of twoor more sensory processes in a way whichenhances the adaptiveness of the brain.

SENSORY STIMULATION - Arousing the brainthrough any of the senses.

SEQUENCING - Contracting muscles in anorderly and meaningful manner or reading,listening, and expressing thoughts.

SHUNT - A procedure of removing excessivefluid in the brain. A surgically placed tubeconnected from the ventricles deposits fluidsinto the abdominal cavity, heart, or large veinsof the neck.

VENTILATOR - Equipment that does thebreathing for the unresponsive patient. Themachinery 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 ofinfections which often occur in unconsciouspatients. Pneumonia and urinary tract infec-tions are most common. Patients may also beplaced on antibiotics to help prevent possibleinfections.

ANTICOAGULANTS - Medications, such asheparin or coumadin, utilized to show downnormal blood clotting and prevent blood clotsfrom forming.

ANTICONVULSANTS - Anti-seizure medica-tions that help prevent the temporary seizuresor convulsions which occur during abnormalelectrical brain activity.

ANTIDEPRESSANTS - Depression and feelingsof low self-worth are common after braininjury. These medications help the patient dealwith these negative feelings.

ANTIPSYCHOTICS - Brain injury is oftenaccompanied by anxiety, personality change,and aggressiveness. These medications add acalming influence and prevent mood swings.

BETA RECEPTOR BLOCKERS - A group ofmedications used to block the nerves incertain areas of the brain, to reduce agitation,rapid heart beat, elevated blood pressure, andtremors.

DECADRON (DEXAMETHASONE) STEROIDS -A medication which appears to help improvefunction of the brain. It also decreases brainswelling and excessive water accumulating inthe brain.

DIDRONEL (ETIDROVATE DISODIUM) -Given to patients who demonstrate a ten-dency to form calcium deposits and abnormalbone formation around joints and in injuredsoft tissues.

LAXATIVES - These stool softeners are usedalong with a carefully supervised dietaryprogram to promote bowel regularity, which isfrequently affected because of nervous systemdamage and long periods of inactivity in bed.

MUSCLE RELAXANTS - Brain-injured individu-als often lose the ability to regulate the forcesof muscle fibers resulting in spasticity andpain. These drugs relax the muscles for greatercomfort, to ease therapy, and to preventspasticity.

PAGE 42

Page 45: COMA GUIDE FOR CAREGIVERS

PAGE 43

RESOURCES FOR FAMILIESOF PERSONS IN COMA

HOTLINESBrain Injury Assn. of DE ............ 1-800-411-0505Crisis Intervention

(Kent/Sussex) .......................... 1-800-345-6785(New Castle) ............................ 1-800-652-2929

Delaware Helpline .................... 1-800-464-HELPNational Brain Injury

Association Hotline ................. 1-800-444-6443703-236-6000

STATE AGENCIESDelaware Insurance Dept. .......... 1-800-282-8611Department of Elections .............. (NC) 577-3464

(K) 739-4498, (S) 856-5367(If clients/families want to know names oftheir elected representatives)

DHSS, Division for Alcoholism, Drug Abuse and Mental Health .............. 577-4240Delaware Psychiatric Center ................ 577-4000DHSS, Division for Mental Retardation ....................... 369-2186, 934-8031DHSS, Division of Social Services (Medicaid) ............... 1-800-372-2022,

368-6610, 577-4448, 422-1520DHSS, Division for the

Visually Impaired .............................. 577-4730DOL, Division of Vocational

Rehabilitation .. 761-8275, 739-5478, 856-5730Violent Crimes Compensation

Board........................ 995-8383, 1-800-890-0045(to assist innocent victims of crime)

FEDERAL AGENCIESSocial Security Administration ............ 323-0304

1-800-772-1213Supplemental 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 anyfurther information, you can contact the Division of Services for Aging and Adults with PhysicalDisabilities at 1-(800) 223-9074.

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

LEGAL/INSURANCE HELPDelaware Volunteer Legal Services.......... 478-8680Disabilities Law Program of

Community Legal Aid ................. 1-800-292-7986Lawyer Referral Handbook ..................... 658-5278,

1-800-773-0606Legal Handbook .......................... 1-800-223-9074 or

1-800-292-7986 (Free)Legal Services Corp. of DE ....... 575-0408, 734-8820Delaware Insurance Commissioner 1-800-282-8611

MEDICAL INFORMATION/REFERRALCall a Nurse ................................................. 428-4100Center for Rehabilitation at

Wilmington Hospital .............................. 428-6600Christiana Care, Health

Information Resource Center ............... 661-3471Delaware Academy of Medicine

Library ...................................................... 656-1629DuPont Hospital For Children ................. 651-4000People’s House ....................... 738-0677 or 456-3404

(lodging for families of hospital patients)Physician Referral ....................................... 658-3168Psychologists’ Referral Network .............. 764-3931Social Worker Referrals .............................. 651-9424

Page 46: COMA GUIDE FOR CAREGIVERS

NOTES

PAGE 44


Recommended