Cancer Caregiver Roles: What You Need to Know

Copyright © 2012 John J. Garnand

All rights reserved. No part of this book may be used or reproduced by any means, graphic, electronic, or mechanical, including photocopying, recording, taping or by any information storage retrieval system without the written permission of the publisher except in the case of brief quotations embodied in critical articles and reviews.

ISBN: 978-1-4525-5345-0 (e)

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The author of this book does not dispense medical advice or prescribe the use of any technique as a form of treatment for physical, emotional, or medical problems without the advice of a physician, either directly or indirectly. The intent of the author is only to offer information of a general nature to help you in your quest for emotional and spiritual well-being. In the event you use any of the information in this book for yourself, which is your constitutional right, the author and the publisher assume no responsibility for your actions.

Balboa Press rev. date: 8/14/2012

Representations

This book was compiled and published under the auspices of Family Caregiving, LLC: Improving Patient Care by Improving Family Caregiving.

The views and statements made in this book are solely those of the author. The author acknowledges that he is not an oncologist, an attorney, nor an accountant. The author is not providing medical, legal, or accounting opinions or conclusions. This is information he personally gathered, developed and utilized during his late wife’s nine year battle with cancer.

The sole purpose of this book is to assist other family caregivers who may find themselves in a similar situation with a loved one who is fighting cancer or an end of life situation.

Nothing herein is to be construed as a solicitation; that is not the intent of the author.

Profits from the sale of this book will be donated to Hospice and to Cancer research.

It is strongly recommended that the reader contact an attorney, or an accountant, or a member of the patient’s Oncology Team with reference to any questions concerning information provided in this book

Contents

Dedication

Preface

Caregiver Medical And Scheduling Support Roles

1) Definitions:

2) Office Appointments:

3) Calendar Management :

4) Timing / Dosage Of Medication—Implementing The Treatment Plan At Home:

Caregiver Medical Support Roles

5) Learning About The Medications:

6) Managing Pain:

7) Monitoring Side Effects: One Of Caregiver’s Most Important Medical Roles.

8) Medical Records

9) Legal Issues: Advance Directives, Living Will, Power Of Attorney:

Selected Mobility Issues

10) Medical Devices To Aid Mobility:

Insurance Management

11) Choosing The Right Insurance Plan:

12) Key Provision Of Insurance Plans For Cancer Patients:

13) High Deductible Health Plans:

14) Other Resources For Those Who Do Not Have Insurance:

Managing The Insurance Processes

15) Getting A Case Manager Within The Insurance Firm:

16) Insurance Records / Eobs / Claims:

17) Denials / Challenges:

Household Care Management Taking Over

18) Cleaning And Maintenance:

19) Paying Bills / Managing The Money:

20) Nutrition Management:

21) Physical Therapy / Flexibility / Range Of Motion: :

Household Management Personal Home Care

22) Personal Care / Modesty / Intimacy:

23) Home Care Pitfalls / Safety:

24) Controls For Infection:

25) Caregiver Relief From 24/7 Coverage:

26) When To Call For Help:

27) Final Note: Thoughts On Laughter

Exhibits

Epilogue

About The Author

DEDICATION

This book is dedicated to cancer patient Family Caregivers — that exhausting, noble, deepest expression of human love.

It was also written to honor my loved one, Susan Marie, deceased after a nine year battle with breast cancer that spread into her spine, and finally into her brain. Susan was a great teacher, from whom I have learned everything that is important in my life. She also taught me that Family Caregiving is truly a sacred calling. This work is my way to give her struggles, her gifts, and her memory to the readers of this book. May she teach and inspire them to become more loving and proficient in their new life journey together.

PREFACE

"You have cancer.…." These words hit us like a thunderbolt, out of the blue.

We struggled to comprehend what was said. Our minds imploded in disbelief; our thoughts became incomprehensible….numb disconnects. And a gnawing primal fear began to well up in our hearts. These are arguably the three most dreaded words in life.

"You have cancer.….." means that TWO LIVES are going to change—one becoming now the life of a cancer patient, and the other the life of the caregiving partner. You are both now about to embark on a new, evolving, and life-changing journey, that deeply engages both of you in the coming months and years. You have just entered into a new phase in your partnership relationship: between husband and wife, between offspring and parent, between caregiver and patient.

As time goes by, more effort will needed to keep up with all the support processes; the care-giver’s involvement gets deeper and deeper, until it threatens to consume the entire energy and soul of the caregiver.

The caregiver must re-prioritize what can be done to keep everything as close to normal as possible. But family and household matters must be balanced by work necessities and ever increasing physiological and emotional caregiving requirements. A new normal will have to evolve and be established and accepted by both partners.

Soon, three specific new support roles will emerge for the caregiving partner:

1)   Medical Support—including scheduling, medication support, monitoring side effects, managing pain, maintaining medical records, and advance medical directives;

2)   Insurance and Financial Management—selecting the right insurance plans to cover the new and expensive cancer drugs, or finding resources if there is no insurance, and saving you both from financial devastation;

3)   Household Management—including nutrition management, safety, controls for infection, as well as providing physical/emotional/spiritual support.

Cancer is a disease that affects both of you—changing your lives, changing your focus, changing your priorities. Cancer gives new purpose to each partner, a new mission. Under these new conditions, each person’s life now gives new meaning and new purpose to the other partner, and to the bond between them.

Cancer always involves TWO.

CAREGIVER MEDICAL AND SCHEDULING SUPPORT ROLES

LEARN AS MUCH AS YOU CAN, as QUICKLY as you can.

Unless you are a Physician or Registered Nurse, as a layman you will need to learn new terminology and a new way of talking about your loved one’s experiences with her disease. You will have to learn to wade through a new language. The cancer caregiver must learn a new vocabulary to be able to understand what is going on with their loved one, and to work intelligently with the Medical Teams.

Cancer has opened up a new world, into which the caregiver needs to find comfort, intelligence and mobility. This is especially true in the new role of Monitor of Side Effects. The caregiver needs to ‘expatriate" from his comfort zone or what has been his usual business life and become embedded in understanding a strange new world of medical terminology and relationships. Being a great caregiver demands this, just like a business assignment to a foreign country requires one to be open and absorb the new culture of that foreign country.

This document is my effort to share my caregiving experiences within my own cancer partner, in the hope that they will help the readers anticipate and cope with the new realities in their lives.

Becoming a good caregiver is a daunting task, requiring your full capabilities effort, and creativity. Both of you will learn from each other: new levels of giving, new levels of heart, new levels of purpose, new ways of thinking, new levels of togetherness, new levels of Being: physically, intellectually, emotionally,