Delaware Health and Social Services, Division of Servicesfor Aging and Adults with Physical Disabilities
1901 N. DuPont Highway New Castle, DE 19720
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.
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
Michael, Jill, and Megan Eddy
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
The Timothy Aberle and Frank Harrington Families(cover photo)
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
TABLE OF CONTENTS1 Dedication
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
43 Resources for Families of Persons in Coma
DSAAPD DHSSNote: 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.
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 mustwait 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.
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 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 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
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