The Complete Bedside Companion

Nursing a parent, spouse, other relative, or friend through the painful progress of a terminal disease is not a road best traveled alone. The Complete Bedside Companion offers warmth, encouragement, and the medical, legal, financial, and emotional advice you need when caring for an ailing loved one.

Drawing on the experiences of dozens of ordinary people who have cared for relatives and friends ill or dying from cancer, Alzheimer's disease, heart disease, stroke, emphysema, diabetes, AIDS, and other serious conditions -- along with the practical wisdom of distinguished medical, legal, financial, and psychological experts -- this sound, compassionate guide provides field-tested advice on every aspect of caring for the sick, including:
-- Doing battle with insurance companies
-- Managing symptoms such as nausea or pain
-- Exploring experimental and alternative therapies
-- Maintaining cash flow and coping with bills

Drawing from the experiences of caretakers of the seriously ill--and the knowledge of medical, legal, financial, and psychological experts--this guide shows how to keep on an even keel while making a loved one's last days as comforable and fulfilling as possible. Line drawings & charts.

Rodger McFarlane, one of America's most respected consumer advocates for the sick, currently directs collaborative research between the American Association of Health Plans and Lotus (IBM), evaluating experimental medical treatments on behalf of customers of the managed care industry. He is the former Executive Director of the Gay Men's Health Crisis (GMHC) and Broadway Cares/Equity Fights AIDS.

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