Coma Guide

7/25/2019 Coma Guide

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COMAGUIDEFOR

CAREGIVERS

Delaware Health and Social Services, Division of Services

for Aging and Adults with Physical Disabilities

1901 N. DuPont Highway New Castle, DE 19720


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OURVISION

Delaware Health and Social Services Division

of Services for Aging and Adults with PhysicalDisabilities, 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.


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Dear Friends:

Families who are going or have been through the experience of

having a family member or friend in coma have many needs. Ascaregivers of a person who is in coma or recently recovering

from a coma, they may have many concerns and questions in

trying to cope with a serious illness. This guide was developed

as a result of the need we identified, when our 29-year-old

daughter, Jill Elizabeth Russell Eddy was in coma for 12 months.

We had no such guide or central place where comprehensive

information and resources on coma could be easily obtained.

When we spoke to our State Representative, William Oberle, he

understood our concerns and enthusiastically supported theidea of the COMA GUIDE FOR CAREGIVERS.

My family and I would like to thank Representative Oberle and

the Division of Services for Aging and Adults with Physical

Disabilities for their wonderful support and untiring efforts to

make this Guide a reality.

It is my sincere hope that the informa-

tion supplied in this booklet will be

beneficial to families who are dealingwith such a tragedy and in some small

way will bring support and comfort

during their time of need.

Linda Morrison Russell,

Mother of Coma Patient

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Michael,Jill,andMeganEddy


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ACKNOWLEDGEMENTS

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)

To obtain a copy of this Guide, or for further information, contact the

Division of Services for Aging and Adults with Physical Disabilities

1901 N. DuPont Highway, New Castle, DE 19720

(302) 577-4791 or 1-800-223-9074

e-mail: [email protected]

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TABLEOFCONTENTS1 Dedication

2 Acknowledgements4 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 Guides38 Coma Resource List

39 Print Resources

41 Glossary

43 Resources for Families of Persons in Coma

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Note: You can click on an entry in the tableof contents to go directly to the section of theGuide that you want to see.


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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 with

brain injury. It is difficult for any physician to predict the outcome during the

first days, weeks, and even months. Along with family members, they must

wait and see how the patient progresses. Struggling to understand this com-

plex condition, most people feel alone and confused.

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

all can benefit from certain basic information. This resource guide provides a

variety of helpful material. The first section describes the structure and function

of the brain and goes on to explain the effects of injury. Patient care in the inten-

sive care unit (ICU) and in other hospital settings is also addressed. The secondsection of the booklet discusses post-traumatic reactions of family members and

close friends and answers some common questions. A glossary of hospital terms

is also included in the back of the booklet.

Although family and friends may be anxious to learn more about brain injury,

reading a resource guide may be difficult during such a trying time. It may be

hard to concentrate and remember explanations. Each person is different, how-

ever. Some want to learn everything they can as quickly as possible. Others

prefer taking in information a little bit at a time.

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

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

jot down questions as they go along. You may wish to use the blank note page in

the back of the resource guide for this purpose. In addition, keeping a journal or

diary of events, feelings, concerns, and questions is usually helpful.

Plan to use this resource guide as you collect information about brain injury and

discuss your concerns with family, friends, and caregivers. We hope this booklet

provides a strong foundation of information for the days ahead.

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NOTICE: The purpose of the following information is to review certain medical

issues. The information contained herein has been supplied as a courtesy from Bryn

Mawr Rehab, Malvern, PA, and thus shall not be reproduced nor be construed as

medical advice or opinion and is not intended as medical advice or opinion.

Though the brain looks like a uniform struc-ture, it is actually divided into many 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 at

least 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 making

new discoveries about how it functions, it is possible through a basic

explanation of the organ to gain some understanding of its 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 bodys 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 that

keep us functioning and acting purposefully.

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

THEBRAIN:

Diagram 1. Cross Section of the Brain


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the cerebellum, and the two cerebral hemi-spheres. The cerebral hemispheres are, in turn,divided into four lobes.

The main brain regions and the lobes 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.

PARIETALLOBESImportant in sensation, perception, attentionand complex aspects of brain processing.

TEMPORALLOBESRegulate memory function, language informa-tion, and behavior.

OCCIPITAL LOBESResponsible for aspects of visual function.


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WHATHAPPENSWITHBRAININJURY

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 take

up 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

Enlarged

ventricles

Swollenbraintissue(edema)

NORMALBRAIN

BRAINWITHEDEMA

BRAINWITHAHEMATOMA

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.

BRAINWITH

HYDROCEPHALUS


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

NEUROLOGICALEXAM: 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 department

and 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 (MAGNETICRESONANCEIMAGINGSCAN): A large magnet and radio waves

are used, instead of X-rays, to take pic-tures of the bodys 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 the

pressure 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.

HOWAREBRAININJURIESEVALUATED?



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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.

FLUIDRESTRICTION: 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. Please

do 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 patients body. This makesless water available to the brain forswelling.

Steroids are used to decrease swelling inthe brain tissue.

Barbiturates are given if the patients

intracranial 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.

VENTRICULARDRAIN(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 patient

or they may be used to give extra breaths.When extra breaths are given the patientsblood 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.

HOWAREBRAININJURIESTREATED?



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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.

CHESTPT ANDSUCTIONING:If the patient has pneumonia you may seestaff using a vibrating machine or clappingon the patients chest. This loosens thephlegm in the lungs. Then the patient will be

asked 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.

SUCTIONINGOFTHESTOMACH: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 through

the 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.

BOWELANDBLADDERCARE:

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

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

RANGEOFMOTION(ROM) ANDSPLINTS:Brain injured patients may not move their

joints 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.

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

WHATOTHERTREATMENTSMAYBEUSED?


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WHATEQUIPMENTWILLYOUSEEWHENYOUVISIT?

MONITORSCREEN: A machine used to keep

track of heart rate, breathing, blood pressure,and intracranial pressure.

HEADDRESSING: 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).

NASOGASTRICTUBE: A tube placed through

the nose into the stomach that can be used tosuction the stomach or provide liquid for-mula directly into the stomach.

ENDOTRACHEALTUBE: A tube inserted throughthe patients 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 rate

and rhythm.INTRAVENOUSCATHETER(IV) ANDINTRAVENOUSFLUID: 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-EMBOLISMSTOCKINGS(FREQUENTLYCALLEDTEDS):Long white stockings used to helpprevent blood clots in the legs.

SEQUENTIALCOMPRESSIONSTOCKING(FREQUENTLYCALLEDKENDALLS): Plastic leg wraps that helpprevent pooling of blood in the legs by inflatingand deflating around the legs.

FOLEYCATHETER: 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 may

have. 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


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COMASCALESANDCOMASTIMULATIONPROGRAMSThere are several scales used to describe patients with brain injury. TheRancho Scale is used more often by health care providers to indicate

levels of recovery. The Glascow Coma Scale rates eye opening, motor

movement (movement of the arms and legs), and verbal response.

EYEOPENING4 = Spontaneously

3 = To voice2 = To pain1 = No response

Rehabilitation centers may use a scale calledthe Rancho Levels. The eight level scale was

developed 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:

LEVEL1 - No response. The patient appearsto be in a very deep sleep or coma and doesnot respond to voices, sounds, light, ortouch.

BESTMOTORRESPONSE6 = Follows commands

5 = Localizes to pain4 = Withdrawal to pain3 = Decorticate2 = Decerebrate1 = No Response

BESTVERBALRESPONSE5 = Oriented and converses

4 = Disoriented and converses3 = Inappropriate words2 = Incomprehensible sounds1 = No response

GLASCOWCOMASCALE

RANCHOSLOSAMIGOSSCALE

LEVEL2 - Generalized response. The patientmoves around, but movement does not seem to

have a purpose or consistency. Patients mayopen their eyes but do not seem to focus onanything in particular.

LEVEL3 - 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.

LEVEL4 - 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.

LEVEL5 - 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


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longer a major problem. Patients may experi-ence some frustration as elements of memoryreturn.

LEVEL6 - Confused but appropriate. Thepatients speech makes sense, and he or she isable to do simple things such as getting

dressed, 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.

LEVEL7 - 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.

LEVEL8 - 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 articleAAC 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 brains 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 on

verbal 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 onesrehabilitation.

Using information from the Rancho Scale, thehealth care team can begin treatment that willhelp develop skills and promote appropriate

behavior. 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 you

approach 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 childs

favorite stories.


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A. THEEFFECTSOFASTROKE

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 left

side 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 other

areas 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.

GLOBALEFFECTSMemory is commonly affected following astroke regardless of which side is affected.Because memory is comprised of many variedcomponents, patients may experience different

types 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 can

affect many dif ferent areas. Some ef fects will be short-term, some may last

longer, and some may be permanent. Some effects may appear suddenly

and disappear just as fast; others may take a long time to come on and an

equally long time to overcome.

THEEFFECTSOFABRAININJURY

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 after

a stroke, if it doesnt 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 persons bowel and bladder functioningmay also be affected following a left or right

stroke. Many management techniques can beused to improve function.

THEEFFECTSOFALEFTSTROKEThe 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. This

may cause difficulty standing, walking,dressing, bathing, and eating.






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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. Anindividuals behavior may also become slow, orappear hesitant when solving problems.

THEEFFECTSOFARIGHTSTROKEA 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 or

paralyzed 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 be

impulsive 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.

RIGHTSTROKE

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

LEFTSTROKE

Paralyzed or weakright side

Speech-languagedeficits and/orswallowingdisorders

Memory, attention,and concentrationdeficits

Poor judgmentand reasoning

Behavior:slow, hesitant,disorganized


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B. MEDICALANDRELATEDPHYSICALEFFECTSOFATRAUMATICBRAININJURY

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.

PROBLEMSWITHNUTRITIONANDEATINGPhysical 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.

Dysphagiais the term that describedswallowing disorders. A swallowing disordercan occur at various points along the foodspathway to the stomach. It is important torecognize that placing food into someonesmouth and having it disappear withoutoutward signs of choking does not assure thatthe food has been swallowed safely. In asignificant number of patients, particularly if

they 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 persons 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 studies

also 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 patients 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.

FEVERIf 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.

FRACTURESMany 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.

HETEROTOPICOSSIFICATIONMany 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 of

motion 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.

HYDROCEPHALUSCerebrospinal 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. Hydrocephalusis 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.


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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 small

catheter or shunt may be required to drainexcess fluid from the brain.

INCONTINENCEOFBOWELANDBLADDERThe 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 improve

bladder management. Both functions alsomay be improved by changes in diet.

PROBLEMSOFINACTIVITYThe long period of inactivity that may be partof recovering from a brain injury can causecertain physical problems. General decondi-tioningis 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 such

as 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 some

patients who may not tolerate anti-coagulants,a filter is sometimes placed in a large vein toprevent clots from going to the lungs.

SEIZURESSeizures 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 is

greater with prolonged unconsciousness,depressed skull fracture, or intracranial hemor-rhage. Seizures can be subdivided into early(one to two weeks after injury), and late post-traumatic seizures. Patients with late 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.

SENSORIMOTOREFFECTSThis term refers to the relationship between

movement 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 persons balance and coordination also maybe affected by a brain injury. Balance dependsupon vision, hearing, and position senseinformation reaching the brain and being


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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.

PROBLEMWITHMUSCLETONE

ANDRANGEOFMOTIONMuscle 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 neurosurgical

procedures may be required in severe orchronic situations.

DYSARTHRIAThis 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.

VISUALDEFICITSVision 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 that

is 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.

OTHERPERCEPTUALDEFICITSBecause 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 ones own limbs, their connectionto the body and their relationship to the envi-ronment may be impaired (proprioceptivedisorder).

C. BEHAVIORALEFFECTSOFATRAUMATICBRAININJURY

Two of the most striking problems manypeople with brain injury experience are a lackof insightabout their condition and denialabout their condition. These problems canrange from complete denial of obviously severe

physical 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 patients strengths andweaknesses so they can provide guidance forplanning and problem solving.


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D. COGNITIVEEFFECTSOFATRAUMATICBRAININJURY

ATTENTIONANDCONCENTRATIONPatients in early recovery often can remaincompletely alert for only a brief period. Later, it

may be difficult for them to focus their atten-tion entirely or to stay with one project 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 ones attention from onesubject to the next.

MEMORYMemory impairment, or amnesia , is common

after 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 memoryis the

ability 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 any

sense 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.

COMMUNICATIONA brain injury can greatly diminish a persons

ability 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.

Aphasiais 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 relate

to its meaning in some way.

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

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

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WHOWILLHELPAFTERBRAININJURY?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.

FAMILYANDFRIENDS:You provide emotional support to thepatient. Family and friends also provide thehealth care team with important facts aboutthe patients 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 persons 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 patients vitals (temperature,blood pressure, heart and breathing rate) andwatch for changes in strength and thinking.

Team Members

DOCTORS

NURSES

FAMILY ANDFRIENDS

PHYSICALTHERAPISTS

OCCUPATIONALTHERAPISTS

SOCIALWORKERS

DOCTORS

PATIENT

SPEECHPATHOLOGISTS

NEURO

PSYCHOLOGISTS

DIETICIANS &OTHER STAFF



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

SOCIALWORKERS:Social workers provide emotional support to

help 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.

PHYSICALTHERAPISTS(PT):Physical therapists evaluate and treat weak-nesses in the patients strength, flexibility,balance, rolling, sitting, standing and walking.Treatment may include exercises or instructionin use of equipment such as walkers, canes, orwheelchairs.

OCCUPATIONALTHERAPISTS(OT):Occupational therapists evaluate the patientsability to perform dressing, bathing, homemak-ing and activities that require memory andorganization. They provide treatment orequipment needed for safe independent living.

SPEECHPATHOLOGISTS: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.

RESPIRATORYTHERAPISTS:

Respiratory therapists assess the patientsrespiratory 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


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HOWWILLYOUREACT?When a friend or family member is hospitalized, it is normal to have

many emotional reactions. You may have these emotions at dif ferenttimes. The emotions you may experience include:

PANICANDFEAROne 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 physical

symptoms may be rapid breathing, inabilityto sleep, decreased appetite and upsetstomach. Some people may cryuncontrollably.

SHOCKANDDENIALYou 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.

ANGERMany 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 have

these feelings.

GUILTGuilt 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 are

feeling 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.

ISOLATIONDuring 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.

HOPEAs 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.



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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 no

time to focus on anything other than theinjured relatives life and problemsyet 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 eachpersons needs, family members can experi-ence isolation, poor health, prolonged fear,and depression.

Each family has its own style of expressing

feelings, dividing chores, and solving prob-lems. All of this may change when a familymember acquires a serious disability, particu-larly a brain injury. It is common that inaddition to feeling sad about the lovedones 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 period

marked by sadness, anxiety, fear, confusion, and frustration or anger. A

brain injury to one family member can be devastating to the family as a

whole. And while the person who was injured is the actual patient, the

entire family needs both support and information during this difficult

adjustment period.

FAMILYISSUES:

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 the

house 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 arethere are no right and wrongonesexpressing them openly and directly isextremely important.

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






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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 dont want to ask for help.They dont 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 staff

members, 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 members recovery, thebetter able you will be to handle the changesthat can arise during the process.

The hope is that individuals who have

experienced 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. Wevecompiled the following list of suggestions foryou to consider.

A. INTERACTINGWITHTHEINJUREDPERSON

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 members 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. Do

not 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 your

support 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 family

members capabilities. Patients often denytheir disabilities and try to influence yourpoint of view about them. You can makeyour assessments based on the informationthat you have.


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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. GENERALGOALS 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 also

help and can be found through your reli-gious institution or through psychologists,psychiatrists, and social workers.

Participate in your family members 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

members 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, Dont look back one day and

compare your loved ones 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, particularly

one 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 patients

condition 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.


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HOWCANYOUHELP WITHRECOVERY?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.

UNRESPONSIVESTAGEAt 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 patients arms and legs. If youdont feel comfortable with these activities,that is okay. The staff will understand.

EARLYRESPONSESAt 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 thestaffs 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 patients 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.



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Continue with suggestions listed in theunresponsive section.

AGITATEDANDCONFUSEDRESPONSESDuring this stage, things are confusing. The

patient 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 the

patient 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 patients 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.

HIGHERLEVELRESPONSESAt this stage patients are able to take part in

their 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 or

she 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.


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Reprinted with permiss ion from The Brain Injury Assn., Inc. we bsite at www.bia.org

TREATMENTANDREHABILITATION

MODELSOFREHABILITATION

In the past, rehabilitation services for peoplewith brain injury were largely provided in amedical 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 funding

are changing rapidly as managed carecontinues to replace the traditional fee-for-service and indemnity insurance plans.

MEDICALLYBASEDREHABILITATION: 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-

WHATISTHEREHABILITATIONPROCESS?

1. The goal of rehabilitation is to help people regain the most independent levelof functioning possible.

2. The rehabilitation process is different for everyone. Rehabilitation programsshould be individualized, catering to each persons 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 persons rehabilitation program.

3. Rehabilitation channels the bodys natural healing abilities and the brainsrelearning 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 its functions increases.


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sionals with training and experience in braininjury rehabilitation. Additional staff sup-port the brain injury rehabilitation teamsefforts, 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 subacute

services 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 brain

injury 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-BASEDREHABILITATION

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, if

there 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-entry

programs 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.


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FINANCIALASSISTANCE

The following resources may offer assistance:

Brain injury is a long term illness that continues long after hospital discharge. As a

result, financial planning for short and long term care needs to begin immediately.

Health insurance can pay for a few days in the hospital but funding needs to be

identified for services after discharge. Social Security Disability or Medicaid may

pay for some of the services needed. Most people have not planned ahead and will

need to find sources of hidden funding.

ON ADMISSION, families should begin to take these steps:

Establish open communication with hospital staff, the social worker, financial aidoffice, discharge planner and make appointments to seek their help in f inding

Hidden Funding.

Call the Claims Supervisor of their health insurance provider and ask their

doctors off ice 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.

SOCIALSECURITY-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.

SUPPLEMENTALSECURITYINCOME(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.


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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 veteransfinancial 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. For

more 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 patientsdoctors. 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 as

the Jaycees, Elks, and Moose Lodges, see theThursdays Crossroads section and theMondays Business Journal section of theWilmington News Journal. Sometimes, familiesask their local newspapers to feature an articleabout their familys 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 for

the 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.


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A nursing home is one option for post-hospital care you may want to explore. This checklist is

designed to help you evaluate and compare the nursing homes that you visit. It would be a

good idea to make several copies of this checklist, so that you will have a new checklist for

each home you visit. After you have completed checklists on all the nursing homes you plan

on visiting, compare your checklists. Comparisons will be helpful in selecting the nursing

homes that might be the best choice for you. Call the Division of Services for Aging and

Adults with Physical Disabilities (DSAAPD) for a list of licensed nursing homes in Delaware at

453-3820 or 1-800-223-9074.

HOWTOEVALUATEANURSINGHOME

NURSINGHOMECHECKLISTPARTI BASICINFORMATION

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? .............. .............. .............. ...........

PARTII QUALITYOFLIFE1. 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 homes environment homelike? .............................................................................

8. Do common areas and resident rooms contain comfortable furniture? ......................

9. Does the facility have a family and residentss council? ..............................................

10. Does the facility have contact with outside groups of volunteers? ...........................

YES NO

YES NO

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PARTIII QUALITYOFCARE11. 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? ......................

PARTIV SAFETY16. Are there enough staff to appropriately provide care to residents? .............................

17. Are there handrails in the hallways and grab bars in bathrooms? .............................

Coma Guide

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Transcript of Coma Guide