A No-Nonsense Guide to Caring for the Seriously Ill.

Contents



Introduction



How to Use This Book



Part One: Caring for the Sick



1. The Hospital and the Medical Team: Who's Who and What's What



When It Is Most Important to Be at an Ailing Loved One's Side



The Family and Medical Leave Act



Set the Stage at Work



Preparing for a Loved One's Hospital Stay



Arranging Blood Donations



What to Bring to the Hospital (and What to Leave at Home)



First Stop: The Admitting Office



Next Stop: The Floor



The Health Care Team: Who They Are and What They Do



Doctors of Medicine (M.D.s)



Nurses



Nurse's Assistants



Other Hospital Staff



Hospital Life: "But the Doctor Who Was Just Here Already Asked Us That!,"



Personalizing the Hospital Room



Ways to Be Helpful When Visiting Patients in the Hospital



Don't Just Sit There, Do Something!



When the Quality of Hospital Care Is Lacking



What Is a Legitimate Complaint?



To Whom Do You Complain?



Sidestepping Hospital Visiting Policies



Making Pitstops Before or After Hours



Outpatient Appointments and Tests



Strategic Scheduling



Preparing for Procedures



Avoiding Long Waits



When Accompanying Loved Ones to Appointments



Preparing for Discharge from the Hospital



Postponing or Expediting Discharge Day



Safety Measures for Around the Home



Other Steps for Getting Ready



Modifying the Home



But Is It Covered?



Recommended Reading



2. Dealing with the Doctors



Choosing a Doctor



The ABC's of Getting Referrals



Points to Consider When Choosing a Doctor



Seeking a Second Opinion



How Is a Second Opinon Arranged?



When Professional Opinions Collide



Obtaining Medical Records



Care Partners, Patients, and Physicians: Ten Keys to Clear Communication



Deciphering the Language of Medicine



Tracking Down the Doctor



Be Judicious with Questions for the Doctor



Dissatisfied with the Doctor?



When It Is Appropriate to Change Doctors?



The Smart Way to Make the Switch



A Final Thought: Dissatisfaction or Denial?



3. The Everyday Angel's Cram Course in Essential Nursing Skills



A Caregiver's Basic Daily Skills



Keeping Patients Hydrated



Safeguarding Patients Against Infection



Types of Infections and How to Prevent Transmission



Special Care: Increased Susceptibility to Infection



How Infections Are Treated



Daily Hygiene



Bathing



How to Give a Four-Star Bed Bath



Giving a Basin Bath



Special Care: Bathing a Loved One Who Suffers from Memory Loss, Confusion, or Intellectual Impairment



Skin Care



Moisturize!



Keep Skin Dry



Itching



Symptoms of Pressure Ulcers



How to Prevent Pressure Ulcers



How Pressure Ulcers Are Treated



Wound Care



Three Steps to Sterile Technique



How to Change a Dressing



Oral Hygiene



Toileting



When Patients Are Confined to Bed



When Patients Are Able to Get Out of Bed



Special Care: Toileting a Loved One Who Suffers from Memory Loss, Confusion, or Intellectual Impairment



Cleaning Patients After a Bowel Movement or Urination



Caring for an Ostomy



Grooming and Dressing



Hair Care



Nail and Cuticle Care



Shaving



Dressing Patients



Turning, Maneuvering, and Lifting



How to Make an Occupied Bed



Lifting Patients by Yourself



Transferring from a Bed to a Chair or Wheelchair



Mechanical Lifting Devices



Tips for Preventing Falls



Basic Home Safety



Basic Walking Safety



To Prevent Falls from Bed



What to Do if a Patient Falls



Preventing Muscle Contracture and Foot Drop



How to Perform Passive Range-of-Motion Exercises



What Is Foot Drop?



Measuring Vital Signs



How to Take a Temperature



Managing Fever



How to Take a Pulse



How to Measure Blood Pressure



How to Monitor Respirations



Administering Medications Safely



Before Filling a New Prescription



At the Pharmacy



Keeping Track of Medications and Dosing Schedules



Routes of Drug Administration



Allergic Reactions and Anaphylactic Shock



Managing an Allergic Reaction



Managing Pain



Attitudes Toward Pain Relief



Fundamentals of Pain Management



Types of Pain Medications



Other Methods of Administering Pain Medications



Nonpharmaceutical Pain Management



What to Do When Pain Is Poorly Controlled



Essential Skills for Preventing and Managing Specific Complications



Digestive Complications



Appetite Loss and Anorexia



Complications That Inferfere with Eating



Indigestion and Nausea



Difficulty Swallowing (Dysphagia)



Constipation and Gas



Diarrhea



Urinary Tract Complications



Incontinence



Urinary-Tract Infections



Insomnia and Other Sleep Disorders



Respiratory Complications



Difficulty Breathing (Dyspnea)



Difficulty Expelling Secretions



Chronic Coughing



Circulatory Complications



Edema, Blood Clots, Phlebitis, Orthostatic Hypotension



Bleeding and Bruising



Basic First Aid



Managing Seizures and Convulsions



Cardiopulmonary Resuscitation (CPR)



The Heimlich Maneuver



When Should You Call an Ambulance?



4. Matters of the Heart



The So-Called Five Stages of Coping



Denial



Anger



rdBargaining



Depression



Acceptance



The Fundamentals of Caregiving



How to Be Supportive (Without Becoming a Pain in the Neck)



Learning to Listen



Other Sources of Patient Support



Patient Support Groups



Finding Hope and Comfort in Faith



Long-Standing Conflicts



Caring for People with Special Needs



When a Loved One Is Not Conscious



When a Loved One Suffers from Brain Function Impairment



Memory Loss



Delusional or Hallucinatory Behavior



Agitated or Paranoid Behavior



Combative Behavior



Restraints



Wandering



When a Loved One Has Impaired Communications Skills



5. Mustering the Troops



Spreading the Work Around



The Family Conference



"If There's Anything I Can Do,"



Getting Men Involved



The Ready Reserves: Teenagers and Children



Long-Distance Angels



When Friends and Family Disappoint



How to Handle Weepers and Wailer



Cheap Shots and Target Practice



A Memo to Family and Friends Who Want to Help



Community Support Services



How to Find Support Services in Your Area



Professional Case Management



6. The Caregiver as Consumer Activist



What Are Clinical Trials?



Who Pays for Clinical Trials



From Laboratory to Marketplace



How Do You Find Out About Clinical Trials?



The Pros and Cons of Participating in a Clinical Trial



Questions to Ask the Physician When Considering Participation in a Clinical Trial



A Rational Approach to Unconventional Treatments



How Do You Find Out About Alternative Therapies?



When Is Enough Enough? Changing Course from Cure to Comfort



Making Other Arrangements: Home Care, Hospice Care, and Nursing Home Care



Why Home Care?



Home Health Care Personnel



Home Hospice Care



When Cultures Collide: Building Rapport Across Class, Race, and Gender



Nursing Homes and Residential Care



7. Care for the Caregivers



Maintaining Your Physical Stamina



Tricks for Keeping Your Body Running



Resolve to Rest; Steal Some Sleep



Eat and Drink Sensibly and Conscientiously



Take Steps to Prevent Infection



Exercise



Don't Postpone Your Own Doctor and Dental Appointments



Don't Try Doing It All



Consider Respite Care or Adult Day Care Services



Slow Down, Pace Yourself



Finding the Emotional Strength



Emotions Common to Caregivers



"I Feel as if I'm in a State of Shock"



"I Feel So Angry and Resentful"



"I Feel So Guilty"



"I Feel So Isolated and Alone"



"I Worry All the Time"



"I Feel So Helpless"



"I Feel as if He's Already Gone"



Techniques for Managing Stress and Anxiety



When Depression Strikes



Caring for the Other Loved Ones in Your Life



Your Romantic Partner



Children



8. Paying the Bills



Bookkeeping 101



Tricks for Maintaining Cash Flow



Financial-Assistance Programs



Government-Funded Programs



Social Security Retirement Benefits



Supplemental Security Disability Income (SSDI)



Supplemental Security Income (SSI)



Aid to Families with Dependent Children (AFDC)



Food Stamps



Privately Funded Programs



A Warning About Pensions



Saving Money on Prescription Drugs



Buyers' Clubs



Prescription Drug Patient-Assistance Programs



AIDS Drug Assistance Programs



Paying for Medical Care



Private Health Insurance



Government-Funded Health Insurance



How to Get the Most out of Health Insurance



9. Preparing for the Worst



Getting Started



The Paper Trail



How to Find a Good Lawyer



Last Will and Testament



Prearranging the Funeral



Legal and Financial Power of Attorney



Other Legal Instruments



Declaring Someone Incompetent



Discrimination Against the Sick and Disabled



Job Discrimination and the Caregiver



Artificial Life Support and Extraordinary Measures



Coma, Persistent Vegetative State, and Dementia



Advance Medical Directives



Living Wills and Medical Proxies



Enforcing Advance Directives



Resisting the Impulse to "Do Something"



Helping a Loved One Die



Tough Decisions: Withholding or Withdrawing Treatment



10. Journey's End



Making the Most of Your Time Together



Making Your Peace



Ways That Loved Ones Face Death



Where People Die



Creating a Comfortable Space for the Dying



Other Ways to Create a Comforting Environment for the Dying



Waiting Room Marathons and Death Watches



11. Aftermath



The Moment of Death



Phone Calls and Final Arrangements



The Funeral



Final Details



Grieving and Getting On with Life



"No Regrets"



Part Two: The Everyday's Angel's Cram Course in Adult Medicine



12. Caring for Someone with Cancer



What Is Cancer?



Symptoms of Cancer



How Cancer Is Diagnosed



What Is Staging?



How Cancer Is Treated



Surger



Radiation Therapy and Its Side Effects



What Is Internal Radiation Therapy?



Chemotherapy and Its Side Effects



Other Forms of Cancer Treatment



Potential Complications of Advanced Cancer



Recommended Reading



13. Caring for Someone with Cardiovascular Disease



Causes of Cardiovascular Disease



Types of Cardiovascular Disease



Heart Attack (Infarction)



Symptoms of a Heart Attack



What Is Angina?



How a Heart Attack Is Diagnosed



How a Heart Attack Is Treated



Arrhythmias



Causes and Symptoms of Arrhythmias



How Arrhythmias Are Diagnosed



How Arrhythmias Are Treated



Congestive Heart Failure



Pulmonary Edema and Pleural Effusion



Difficulty Breathing (Dyspnea)



How Heart Failure Is Diagnosed



How Heart Failure Is Treated



Potential Complications of Advanced Cardiovascular Disease



Recommended Reading



14. Caring for Someone with Cerebrovascular Stroke or Traumatic Brain Injury



What Happens in a Stroke?



Ischemic Stroke



Hemorrhagic Stroke



Traumatic Brain Injury



What Happens in a Closed Head Injury



Diagnosis and Treatment of Stroke and Traumatic Brain Injury



Craniotomy



Carotid Endarterectomy



Aneurysm Surgery



Drug Therapy



Potential Acute Complications and How They Are Managed



Impaired Respiration



Heart Attack



Difficulty Swallowing (Dysphagia)



Pulmonary Embolism



Incontinence



Potential Long-Term Effects of Stroke and Severe Traumatic Brain Injury



Paralysis/Weakness



Contracture



Hemispheric Neglect



Persistent Headaches



Speech/Language Loss (Aphasia)



Changes in Behavior and Personality



Depressions



Rehabilitation



Deciding on the Proper Rehab Setting



Choosing a Rehabilitation Program



How You Can Help During Rehabilitation



Potential Life-Threatening Complications



Recommended Reading



15. Caring for Someone with Chronic Obstructive Pulmonary Disease (Emphysema and Chronic Bronchitis)



Chronic Obstructive Pulmonary Disease and the Lungs



What Causes Chronic Obstructive Pulmonary Disease?



Early Symptoms and Diagnosis



Symptoms and Complications of Advanced COPD



Shortness of Breath (Dyspnea)



Chronic Coughing



Difficulty Expelling Secretions



Appetite Loss



Insomnia



Depression



Other Potential Complications



How COPD Is Treated



Potential Life-Threatening Complications



Pulmonary Infection



Respiratory Acidosis



Secondary Polycythemia



Respiratory Failure/Ventilatory Failure



Cor Pulmonale



Recommended Reading



16. Caring for Someone with Diabetes



What Is Diabetes?



Symptoms of Diabetes



How Diabetes Is Diagnosed



How Diabetes is Treated



Acute Complications of Diabetes



Diabetic Ketoacidosis/Hyperglycemic Hyperosmolar Nonketotic Coma



Hypoglycemia



Long-Term Complications of Diabetes



Peripheral Neuropathy



Foot Ulcers



Gastroparesis



Constipation



dDiabetic Diarrhea



Incontinence



Diabetic Retinopathy



Potential Life-Threatening Complications



Recommended Reading



17. Caring for Someone with AIDS/HIV



What Is AIDS? What Is HIV?



The Illnesses of AIDS



Pneumocystis Carinii Pneumonia



Tuberculosis



Mycobacterium Avium Intracellulare Complex



Cryptosporidiosis



Toxoplasmosis



HIV Encephalopathy (HIV Dementia)



Kaposi's Sarcoma



HIV Wasting Syndrome



How HIV Is Diagnosed



How HIV/AIDS Is Treated



Antiviral Therapy



AIDS Treatment and Prevention



Clinical Trials and HIV/AIDS



Managing Symptoms and Side Effects



Recommended Reading



18. Caring for Someone with Liver Disease



The Liver



Causes of Cirrhosis



Chronic Alcoholism



Chronic Active Viral Hepatitis



Early Symptoms and Diagnosis of Liver Disease



Managing Symptoms of Liver Failure



Jaundice



Gallstones



Edema/Ascites



Life-Threatening Complications of Liver Failure



Hepatic Encephalopathy



Variceal Bleeding



How Liver Disease Is Treated



Diet



Liver Transplantation



Recommended Reading



19. Caring for Someone with Kidney Disease



The Kidneys



Causes of End-Stage Renal Disease



Diabetes



Hypertension



Kidney Diseases



Analgesic Drugs



Symptoms of Chronic Renal Failure



How Kidney Disease Is Diagnosed



Complications of End-Stage Renal Disease and Their Symptoms



Uremia



Hyperkalemia



Hypervolemia/Edema



Renal Tubular Metabolic Acidosis



Anemia



Renal Osteodystrophy



Immunosuppression



Neuropathy



Dry, Itchy Skin



Dry Mouth, Altered Taste, and Chronic Thirst



Depression



How End-Stage Renal Disease Is Treated



But Is It Covered?



What Caregivers Should Know About Hemodialysis



Caring for a Fistula or Shunt



A Typical Hemodialysis Treatment



What's in a Number?



Side Effects of Hemodialysis



Our Role as the Patient's Advocate



What Caregivers Should Know About Peritoneal Dialysis



Side Effects of Peritoneal Dialysis



The Renal Diet



Protein



Potassium



Sodium



Phosphorus



Calories



The Renal Diet and Diabetics



Kidney Transplantation



But Is It Covered?



Life Following Kidney Transplantation Surgery



Recommended Reading



20. Caring for Someone with a Progressive Neurological Disease



The Central Nervous System



Alzheimer's Disease



Early Signs of Alzheimer's Disease



Parkinson's Disease



Early Signs of Parkinson's Disease



Amyotrophic Lateral Sclerosis



Early Signs of ALS



How Neurological Diseases Are Diagnosed



How Neurological Diseases Are Treated



Alzheimer's Disease



Parkinson's Disease



Amyotrophic Lateral Sclerosis



Effects of Advanced Progressive Neurological Disease



Effects of End-Stage Alzheimer's Disease



Hyperactivity



Hiding Objects



Combative Behavior



Effects of End-Stage Parkinson's Disease



Impaired Mobility



Chronic Constipation



Dependent Edema



Eye Irritation



Seborrhea/Seborrheic Dermatitis



Dementia



Depression



Effects of End-Stage Amyotrophic Lateral Sclerosis



Impaired Mobility



Symptoms Common to Advanced AD, PD, and ALS



Incontinence



Contracture



Muscle Cramping



Insomnia



Speech/Language Loss (Aphasia)



Difficulty Swallowing (Dysphagia)



Appetite Loss/Wasting



Difficulty Expelling Secretions



Difficulty Breathing (Dyspnea)/Respiratory Failure



Recommended Reading



Appendix A: Recommended Resources



Appendix B: Miscellaneous Resources



Appendix C: For Referrals to Home Health Care, Hospice Care, Long-Term Care, Adult Day Care, Respite Care, and Rehabilitation Facilities



Bibliography



Index