Family Caregiving: A Step-By-Step Guide to Successful Caregiving

By Brett H. Lewis

Family Caregiving explores one of the most precious and fulfilling gifts of love that can be given to a family member or a friendand also one of the most difficult tasks to undertake. The difficulty increases in magnitude because many family caregivers have no formal medical training other than basic first aid. In most cases, all of their medical knowledge has come from their own life experiences with personal illnesses, accidents, and medications. In Family Caregiving, author Brett Lewis shares his insights and the bounty of information that he learned acting as a family caregiver for both his father and his close friend.

He explains that even though caregiving is stressful, being prepared and knowledgeable can reduce stress levels and better position a family member for caregiving success. A caregiver should have a thorough understanding of the patients personal and family medical history, current symptoms, and medical conditions. It is critical to learn how to interact effectively with medical personnel; to become familiar with hospital/rehabilitation center processes and protocols; and to learn about basic medical terminology, equipment, and procedures.

By sharing candid, real-world experiencesincluding his mistakesLewis provides a step-by-step guide that can enable the family caregiver to better navigate the journey of caregiving.

• Language: English
• Publisher: iUniverse
• Release date: Oct 1, 2012
• ISBN: 9781475940497

Brett H. Lewis

Brett H. Lewis earned a bachelor’s degree from the United States Military Academy at West Point and is currently a self-employed US Army veteran. Lewis is also the author of the award-winning book Family Caregiving. A father and grandfather, he lives in New Jersey.

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Copyright © 2012 Brett H. Lewis

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ISBN: 978-1-4759-4051-0 (sc)

ISBN: 978-1-4759-4050-3 (hc)

ISBN: 978-1-4759-4049-7 (e)

Library of Congress Control Number: 2012913552

iUniverse rev. date: 9/28/2012

Contents

Preface

Acknowledgments

Introduction

PROCESS: Planning and Preparation

Physical, Mental, and/or Emotional Capability

Physical

Mental and/or Emotional

Home

Safety Assessment

Emergency Escape Plan

Backup Power

Phone

Transportation

Comfort and Accommodation

Safety

Survival Kit

Handicap Parking Permits

Documentation

Medical Packet

Advance Health-Care Directive

Durable Power of Attorney

Other Important Documents

Pharmacies

Medical Equipment

Identifying and Obtaining Medical Equipment

Payment Options

Research, Communication, and Tools

Research

Communication

Tools

Expenses and Taxes

Out-of-Pocket Expenses

Payment Options

Income Taxes

PROTOCOL: Roles and Rules

Hospitals and Rehabilitation Centers

Medical Triage

Medical Staff

Clinical Staff

Administrative/Management Staff

Interacting with the Medical Staff

Observe: They Train You

Ask Questions and Listen Carefully (They Train You)

Advocate for Your Patient (You Train Them)

Medical Staff Members Are Human Just like You

When Things Go Wrong

Visitation Policy

Documentation

Nutrition and Diet

Common Medical Diets (Corleone 2010)

Medications

Prescription and Over-the-Counter Medications

Noncontrolled and Controlled Substance Medications

Storing and Dispensing Medications

Medical Transportation

Ambulance

Medical Van

Home Health-Care Services

Services

Fees

Credentials

Professional Home-Care Assistance

Services

Fees

Credentials

CARING: Sanity, Success, and Recovery

Tough Love

What Are the House Rules?

Balancing Caregiver and Patient Needs

Managing Family Members: For Better or Worse

Who Is the Boss?

Buffer Zones

Why You Need Buffer Zones and Respite Care

Caregiving with and without Buffer Zones

Howl at the Moon

Success: Regardless of the Outcome

Caregiver Recovery

The Expected

The Unexpected

The End of My Journey

Epilogue

Appendix A Medical Packet

Appendix B Home Safety Assessment Checklist

Appendix C Medical Acronyms

Appendix D Medical Specialties, Subspecialties, and Descriptions

Specialties and Subspecialties

Descriptions

Appendix E Medical Diagnostic and Functional Procedures

Biopsy

Catheters and Devices for Urinary Incontinence

Central Venous Catheters

Computed Tomography (CT or CAT Scan)

Contrast Materials

Electrocardiogram (EKG or ECG)

Electroencephalogram (EEG)

Endoscopy

Magnetic Resonance Imaging (MRI)

Percutaneous Endoscopic Gastrostomy (PEG) Feeding Tube

Positron Emission Tomography (PET Scan)

Ultrasound

X-ray

Appendix F Abbreviated Advance Directive for Health Care

Appendix G Family Caregiving Support Resources

Bibliography

Disclaimers

Documents, Tables, and Lists

With respect to documents, tables, and lists available from this book, the author and publisher do not make any warranty, express or implied, including the warranties of merchantability and fitness for a particular purpose, or assume any legal liability or responsibility for the accuracy, completeness, or usefulness of any information, apparatus, product, or process disclosed.

Reference from this book to any entity, product, service, or information does not constitute an endorsement or a recommendation by the author or publisher and is provided with the intent of providing information only.

Endorsements

Reference herein to any specific medical and home-care assistance personnel, medical and rehabilitation facilities, commercial products, process, or service by trade name, trademark, manufacturer, or otherwise does not necessarily constitute or imply its endorsement or recommendation by the author or publisher and is provided with the intent of providing information only.

Hyperlinks

The appearance of external hyperlinks in this book does not constitute endorsement by the author or publisher, of the linked websites, or the information, products, or services contained therein. All links are provided with the intent of providing information only.

Legal Advice

The information, ideas, and suggestions in this book are not intended to render legal advice. Before following any suggestions contained in this book, you should consult your personal attorney. Neither the author nor the publisher shall be liable or responsible for any loss or damage allegedly arising as a consequence of your use or application of any information or suggestions in this book.

Medical Advice

The information, ideas, and suggestions in this book are not intended as a substitute for professional medical advice. Before following any suggestions contained in this book, you should consult your personal physician. Neither the author nor the publisher shall be liable or responsible for any loss or damage allegedly arising as a consequence of your use or application of any information or suggestions in this book.

First and foremost, many thanks to God for watching over me as I completed my caregiving journey. I am a better person for it.

To Dad and Amy: I hope I did it right as your caregiver.

To family caregivers all over the world for being there for your loved ones.

Preface

Family caregiving is one of the most precious and fulfilling gifts of love you can give another and one of the most difficult things you will ever do. This difficulty increases in magnitude because, like me, you are probably a family caregiver with no formal medical training other than basic first aid and/or CPR training. In most cases, all the medical experience you will have is your life experience with your own illnesses, accidents, and medications. This said, you will learn quickly as you begin your caregiving journey, and hopefully Family Caregiving will help you.

Even though caregiving is stressful, being prepared and knowledgeable will reduce stress levels and better position you for caregiving success. You should have a thorough understanding of your patient’s personal and family medical history, current symptoms, and/or medical conditions; learn how to effectively interact with medical personnel; become familiar with hospital/rehabilitation center processes and protocols; and learn about basic medical terminology, equipment, and procedures.

On a different note, as a family caregiver, you may observe all or some of the following patient symptoms every morning and throughout each day with the intensity and frequency of the symptoms increasing over time:

•   pounding heartbeat and/or high pulse rate

•   rapid breathing

•   trouble sleeping/insomnia

•   fluctuating weight gain or loss

•   moodiness/mood swings

•   displays of anger, panic, and/or anxiety

•   lethargy and/or fatigue

•   sweating

What do these symptoms indicate and how should you react? In fact, the symptoms clearly indicate a common condition and course of action that every family caregiver should recognize. The answers may elude you because the patient is you, the family caregiver. The symptoms are just a few of many for caregiver burnout, and if you are not careful or prepared, you could become the other patient requiring your own medical and/or emotional intervention as I needed after caregiving was over.

This said, always remember that you must take care of yourself first because if you go down, so will your patient. This is why the airline preflight safety briefing given by flight attendants includes instructions for you to put on your oxygen mask first and then take care of your child or whomever you are caring for.

Family Caregiving will draw upon my four-plus years of family caregiving experience with hospitals, rehabilitation centers, a home-care assistance agency, outpatient home health-care services, and full-time in-home care while helping Dad care for Mom, who had Alzheimer’s disease, and, over a decade later, caring for Dad and finally a nonfamily loved one I will call Amy. However, I will share with you my experiences caring just for Dad and Amy.

Additionally, I will refer to the loved one you are caring for as patient because he or she is not only loved but also your medical patient, thus requiring you to adjust your mind-set to balance your caring between two conflicting forces—your instincts to love and pamper versus your caregiving responsibility to dispassionately exercise appropriate medical process and protocol.

What about me? I am a sixtyish recovering family caregiver. While caring for Dad for two years and, after he died, Amy for five months, I had to contend with a compromised lower back and hip that limited my lifting and twisting capability.

Health is by chance. Caregiving is by choice.

Do I want to be a family caregiver again? Honestly, no. I am still recovering from caregiver burnout while making sense of it all by writing Family Caregiving to share with you what I learned.

Would I be a family caregiver again? Yes, but only if there is no other alternative. Bottom line, neither I nor my family abandons our own or those close to us.

A family caregiver stays when the rest of the world walks out.

As you read Family Caregiving, you may or may not agree with how I handled certain situations or with some of the caregiving techniques, processes, or protocols I followed. This is okay and expected. As individuals are unique, every family caregiving situation is unique, requiring unique approaches that will work just for you and your patient. By sharing my experiences and what I have learned (and by including my mistakes), if I make you think and consider things you would normally not have considered, I have done my job.

Hopefully, Family Caregiving will give you commonsense tools, information, and personal insights to get you started and help you maintain your sanity and health and ultimately succeed as a family caregiver.

Doctors diagnose, nurses heal, and caregivers make sense of it all.

Brett H. Lewis

New Jersey

Acknowledgments

To my daughter, Nicole, and sister, Paula, who are constant sources of patience (with me), support, and unending love—my trusted confidants and cheerleaders. Their love keeps me straight.

To Theressa (Tee) Smith, my dad’s significant other, who gave Dad love and care for many years.

To my nephew, Kevin, who was Dad’s caregiver while Dad endured radiation treatments in Atlanta, Georgia, and my niece, Yvette, who helped care and cook for Dad.

To Reverend Janice Sutton (Trinity United Methodist Church in Highland Park, New Jersey), who provided much-needed spiritual comfort to Dad and me, and laid Dad to rest.

To Bevelyn Lewis, Ronald and Gail Cavanaugh, Jenoveva Jones, Jill Wine-Banks, Richard Hammond, Shamik Spann, and others too numerous to list, for encouragement and/or invaluable feedback.

To all doctors, nurses, and supporting staff who cared for Dad: your work and skills are gifts. I give a special shout-out to Dad’s primary care physicians—initially Dr. Louis Sangosse and ultimately Dr. Irving Kaufman.

To the medical and rehabilitation facilities in New Jersey that provided excellent care to Dad or Amy:

•   AristaCare at Cedar Oaks, South Plainfield

•   Muhlenberg Hospital (outpatient services), Plainfield

•   Somerset Medical Center and Family Practice, Somerset

•   St. Barnabas Medical Center, Livingston

•   St. Cloud Health Care Center, West Orange

•   St. Peters University Hospital, New Brunswick

To Griswold Special Care, North Brunswick, New Jersey, which provided outstanding professional home-care assistance and assigned Jonathan Otoo, a certified home-care assistant par excellence, to help me care for Dad.

To the Riparian Restaurant and Lounge, in Piscataway, New Jersey, for providing a safe and relaxing haven when I needed to decompress and howl at the moon.

Introduction

If you do an Internet search for caregiver guide, caregiving guide, caregiving, caregiver, family caregiving, or family caregiver, you will get between fifty thousand and eighteen million–plus total results. How do you navigate through this mountain of data? Does it feel like you are looking for a caregiving needle in an Internet haystack? And how do you answer the question you need to ask first: Where do I start? Hopefully, I will point you in the right direction.

You may be asking these questions: What makes Family Caregiving different from all the other caregiving guides and related documentation out there, and why should I listen to you, Brett? You are not a licensed or certified medical professional.

To answer the first question, most caregiving websites and guides will provide informative medical and support information mostly as bullets or checklists, sometimes supplemented with a blogging section and/or short (and generalized) personal anecdotes or testimonials. However, they are usually limited regarding in-depth personal caregiving experiences and scenarios that provide much-needed context and perspective.

Additionally, a lot of these websites will focus on a specific type of caregiving, such as for the elderly, those suffering from dementia, or MS patients, and the like. In addition to providing information from my own Internet research and caregiving-related interactions, I personalize and