A Guide For Patients And Families From Hospital To Home

Brain Injury Information HandbookA Guide for Patientsand Families FromHospital to HomeCalifornia Pacific Regional Rehabilitation CenterBrain Injury Network of the Bay Area

2014 Brain Injury Network of the Bay Area and California Pacific Medical Center

IntroductionI’ll begin by commending you for opening this guide. Recognizing that this processis one you will need help with is an important first step. California Pacific RegionalRehabilitation Center and the CPMC Foundation were eager to provide a resourcethat can help with this process.Knowledge and information provide a relative amount of control to a seeminglyout of control situation. It is our hope that the information in this handbookempowers you to ask more questions and purposefully seek the answers andcare you and your loved one deserve.Respectfully,Scott Rome, M.D.Medical Director, California Pacific Regional Rehabilitation CenterChief, Division of Physical Medicine and RehabilitationCalifornia Pacific Medical CenterSan Francisco, CaliforniaChapter I. IntroductionPage 1

TI am glad this handbookhas found its way to you.It is the collaborativeeffort of a team thatgenuinely cares aboutyour experience andhopes to provide someguidance as you navigatethe path of brain injuryrehabilitation.–Patricia Gillhis handbook was designed to provide information and answer questions,many of which you didn’t even know you needed to ask. It is divided intodistinct sections that are relative to a somewhat predictable progression thatfollows a brain injury. The information ranges from what to expect in theintensive care unit (ICU), to how to talk with insurance companies, to whatquestions to ask your team when discharged home. Personal case studies areincluded throughout to highlight strategies that have worked for others whoseexperience may resonate with you.While this handbook is full of information, it is not exhaustive. And there areholes in the continuum of brain injury recovery. In some regions, these holesinclude a lack of community organizations or support groups for the brain injuredpopulation. Universally, there is a lack of housing specifically designed for thispopulation. And funding is always an issue. We do not have all the answers, butthey’re out there. They might not look like what you would have thought theywould or be in a place you would expect but they are out there. We know thisbecause we have witnessed the creative and resourceful efforts of many survivorsand their caregivers over the years.We hope the guide empowers you to ask questions and not accept “I don’t know”as an answer. The real-life examples included are not only inspiring, but are alsoexamples of how others have plugged these holes.I am grateful to California Pacific Regional Rehabilitation Center and thevolunteer team that partnered with BINBA to create this guide. Thank You toeveryone who has contributed.It is our hope that the book you hold in your hands becomes a helpful tool thatyou are able to refer to as a means of attaining information and providing somesense of comfort in increased knowledge.Warmly,Patricia GillExecutive DirectorBrain Injury Network of the Bay AreaLarkspur, CApatricia@binba.orgYou can find this guide and additional informationat www.binba.orgPage 2Chapter I. Introduction

AcknowledgementsThis guide is the collaborative effort of many and reflects what can be accomplished when a group comes together witha common goal. Survivors, family members, caregivers, and brain injury professionals volunteered their time, expertise,experience, and insight to help pave a smoother road for those who find themselves holding this book. The strength andwisdom of each contributor is profound and to each we are grateful.This guide was funded by a generous grant from the CPMC Foundation and California Pacific Regional RehabilitationCenter at CPMC. Thank you.How To Use This GuideThis guide is intended to provide asa reference that will help you accessinformation in a manner relative toyour current needs. These needs maychange rapidly, though often in asomewhat predictable sequence.Hopefully, this guide will providea framework for gathering relevantinformation, help you to formulatequestions and identify areas that needattention. It is not intended to replaceprofessionals or to serve as the onlymeans of attaining information. It isnot a comprehensive manual, but anintroduction to issues that may crossyour path as you navigate through theprocess of brain injury recovery.Recovery from a brain injuryinvolves the efforts of a community.In some cases this community isone you didn’t know existed.The guide is divided into generalsections that are initially relevantto levels of medical need and theprobable issues associated with thatlevel. Further into the guide, theinformation is directed toward theneeds of survivors and caregiversafter they leave the hospital setting,including a section with resources.It must be recognized that no twocourses of recovery follow the samepath. For this reason, when using thisguide, it is important to take notes,underline and jot down questionsas they arise.Hopefully, there is some comfort inknowing the information in yourhands was compiled by people whohave been in your same place. Satin that same chair. Watched thesame monitors. The intention of thisguide is to fill in the gaps in yourunderstanding and provide usefulinformation so you can more easilynavigate this unfamiliar terrain.And hopefully with knowledgewill come some sense of control.The information and resources listed here are not intended to be an endorsement, nor are the listings all-inclusive. While we have tried to check allresources as thoroughly as possible, we cannot guarantee the accuracy of all information. Additionally, there may be omissions that are unintended.While it is not an exhaustive list, there are many helpful resources listed that can help point you in the right direction to find the service you need.Chapter I. IntroductionPage 3

Table of ContentsI.IntroductionIntroduction by Scott Rome, MD, Medical Director, California Pacific Regional Rehabilitation Center, San Francisco. 1Letter from Patricia Gill, Executive Director, Brain Injury Network of the Bay Area. 2Acknowledgements. 3Disclaimer. 3Introduction—How to Use this Guide. 3II.Overview of Brain InjuryWhat’s in this Section. 7Acquired Brain Injury: Definition. 7Statistics. 8Prognostic Indicators. 9Glasgow Coma Scale. 9Rancho Los Amigos Levels of Cognitive Function: How to Interact with Individuals with TBI. 10III.AdvocacyWhat’s in this Section. 15Patient Bill of Rights. 16Caregiver Bill of Rights. 17Creating the Best Hospital Environment. 18Case Study: Personalizing the Hospital Experience. 19Managing/Delegating Responsibilities Outside the Hospital. 20Case Study: It Takes a Village. 21Worksheet for Managing Responsibilities Outside the Hospital. 22IV.The Acute Phase: From The ER to The Medical FloorsWhat’s in this Section. 23The Emergency Department: What Just Happened. 23The ICU: What to Expect. 24Medical Floors: What to Expect. 26Page 4Table of Contents

Insurance. 27How to Talk to Your Insurance Company. 28Social Service Programs. 29How to Make a Medical Information Binder. 30Case Study: When Life Gives You Lemons . 34The Five Stages of Grief. 35Preparing for the Next Step—The Post Acute Phase. 36How to Interview an Acute Rehabilitation Facility. 38V.The Post Acute Phase: Beginning The Rehabilitation ProcessWhat’s in this Section. 41The Post Acute Phase: What to Expect. 41The Rehabilitation Team: New Team Members . 42Questions to Ask Before You Leave the Hospital. 45Home Safety Checklist. 46VI.The Post Hospital Phase: Leaving The HospitalWhat’s in this Section. 49Where From Here: Leaving the Hospital. 49Independent/Home with Supervision. 49Transitional Living Center. 50Hospital Based Outpatient Day Treatment Programs. 50Community Based Day Treatment Programs. 50Assisted Living, Supported Living or Board and Care. 50Outpatient Therapy. 50Out of the Hospital: What to Expect. 50Case Study: Filling in Holes. 53Table of ContentsPage 5

VII. Common SequelaeWhat’s in this Section. 55Common Sequelae—Persistent Issues Impacting the Brain Injury Survivor. 55Case Study: Getting From Point A to Point B May Not Be a Straight Line. 59VIII. Coping With StressWhat’s in this Section. 61Coping with Stress. 61IX.Legal IssuesWhat’s in this Section. 65Legal Issues. 65X.Financial IssuesWhat’s in this Section. 69Financial Issues. 69XI.HousingWhat’s in this Section. 73Independent Housing Issues. 73Case Study: Thinking Outside the Box. 75XII. Resource ListingsWhat’s in this Section. 77Community & Internet Based Resources. 77XIII. Glossary. 79XIV. Recommended Reading. 85The Brain and Its Function. 87Page 6Table of Conents

Chapter II.Overview Of Brain InjuryWhat’s in this section Acquired Brain Injury: DefinitionThis section will provide a workingdefinition of brain injury, as wellas a look at the general factorsconsidered when determining theprognosis for recovery followinga brain injury. You’ll also find adescription of the different phasesa brain injured individual mightprogress through and how tointeract with your loved oneduring each stage.We take for granted the role our brain plays in our lives. We moveHopefully, as your understandingof brain injury increases, you maydevelop some sense of control ofthe situation.Chapter II. Overview Of Brain Injurythrough our days facing minor irritations, finding times when we are notas sharp as we would like, maybe having some moments of forgetfulness.We notice that when we are tired or stressed, things are not as easy aswhen we are rested and focused. But what we generally do not think aboutis how the brain is responsible for our every action, emotion, and thought.A brain injury can affect how a person feels, thinks, acts, and relates toothers. The important role our brain plays in all areas of our functioning,and our lives, comes into sharp relief when there is an injury to the brain.Page 7