Capsules of Hope: Survival Guide for Caregivers

By Kat Crawford

Capsules of Hope: Survival Guide for Caregivers is more than a memoir; it is the authors' story of tenacity, thirty-one capsules filled with hope, survival tid-bits and twenty-two pages of resources. The book provides encouragement for caregivers and insights on how to handle every day decision making, how to talk to children about a parent's illness, and where to turn when the medical world offers no hope. Kat addresses how changes happen that extend beyond the patient and caregiver, how a traumatic illness encompasses the extended family, co-workers and even the neighbors. The primary caregiver struggles to find quality, guilt-free, help. When faced with her husband's terminal illness, Kathy Crawford searched for that hope. In the process, she became "The Lionhearted Kat" and turned her endearing journey of pain and laughter into Capsules of Hope for other caregivers.

• Language: English
• Publisher: Kat Crawford
• Release date: Apr 21, 2015
• ISBN: 9781943027002

Book preview

Capsules of Hope

Survival Guide for Caregivers

The Lionhearted Kat

Katherine J. Crawford

Copyright ©2009 by Katherine J. Crawford

Cover Image and Design ©2009

Mike Miller

Timber Springs Photography

28129 Hackberry Rd

McClelland, IA 51548

http://www.TimberSpringsPhotography.com

Used by permission

All rights reserved. No part of this publication may be reproduced, stored in a retrieval system or transmitted in any form or by any means, electronic or mechanical, photocopy, recording, or otherwise without the prior written permission of the publisher, except the inclusion of brief quotations, being used in context with reference noted, for review.

All stories are shared from real families, and real experiences. Many names have been changed to protect the privacy of the individuals, doctors and companies involved.

Publishing assistance provided by

Electric Moon Publishing at Smashwords

www.emoonpublishing.com

Library of Congress Control Number

ISBN-13: 978-1-943027-00-2

ISBN-10: 1943027005

All Scripture quotations in this book, unless otherwise indicated, are taken from The New International Version. (NIV) Copyright 1985 by The Zondervan Corporation. All rights reserved. Used by permission.

Smashwords Edition, License Notes

This eBook is licensed for your personal enjoyment only. This eBook may not be re-sold or given away to other people. If you would like to share this book with another person, please purchase an additional copy for each person you share it with. If you’re reading this book and did not purchase it, or it was not purchased for your use only, then you should return to Smashwords.com and purchase your own copy. Thank you for respecting the hard work of this author.

Dedicated to

My best friend, the man I call Hon, Sweetie, or Husband,

Gary L. Crawford.

And my brother, who believes in the project and helped make it possible,

Karl Demarest

Endorsement

I enjoyed the Capsules of Hope. I thought that they brought to light many of the issues that not only the Caregivers of PMP patients deal with, but many that are dealt with by all Caregivers. Kat’s wit and humor made the book easy to read and entices the reader to want more. I found the section on Attitude Guidelines for the Caregiver and Patient especially helpful. You can tell Kat has poured her heart and soul into this book and it will be very relatable to those who are Caregivers and patients, too.

—Holly Sennett, APRN-BC, ANP, ACNP

When Gary Crawford developed a rare cancer, No treatment—no hope, said the doctor. His wife Kat came out swinging. She has turned what she learned on her caregiver’s journey to cancer and back into Capsules of Hope. With compassion, humor, and obvious love for God and for her man, she squares off against their common foe. Her victory and unique insights will inspire anyone to rise to the challenge of your own demons, whatever they are.

—Martha Evans Sparks, Author

Give Us This Day; Cherish the Days;

Strength for Today books for Caregivers.

Kat Crawford delivers—with humor and common sense— all we need to get us through the most challenging times of suffering. Furthermore, she gives Caregivers all the spiritual nourishment they will need to become lions of courage and bring their loved ones though with hearts and minds restored to health.

—Laurie Todd, Author

Fight Your Health Insurance and Win

Table of Contents

Cover

Title

Copyrights

Dedication

Endorsements

Table of Contents

Forward by Dr. Brian Loggie, MD

Introduction

Hope Disappeared, Kat’s Journal

Part I

My Story

The Lord is Totally Trustworthy, Kat’s Journal

Part II: Capsules of Hope

Caregivers—Unique Givers

Help! I’m Soon to Be a Widow

Roomies for a Reason

A Good Dose of Puppy Love

Amazing Prods

Likeable Lingo

He Did What?

Some Make Decisions

Case of Unfounded Guilt

Lord! I Need Laughter

I Ain’t Going

Combat Ready 24/7

Help Him Help Himself

Don’t You Get It?

Sound Judgment is a Lasting Legacy

Don’t Should on a Caregiver

Edge of Tomorrow

Hired Caregiver—Helper or Invader

Hired Caregiver—Employee POV

Celebrate the Gift of Life

Postive or Negative—You Choose

To Do or Not To Do—That is the Question

Listening Eyes

The Blame Game

Keep It Simple, Please!

Just Do the Next Thing

Smiles Bring Hope to Life’s Impossibles

Self-focused or Bad Consumer

Thanks for the Memories

Choose to Mourn or choose to Celebrate

Pay It Forward!

Epilogue

Dem Bones Dem Bones, Gary’s Fun

Part III Resources

Glossary

Don’t Fight the Battle Alone

Frequently Asked Questions

How Do I Find the Right Doctor?

When and What Do I Tell the Children?

Books to Help In Difficult Times?

How Much Do I Tell The Family?

My Spouse is Ill—What About My Job?

A Hospital Stay is Necessary

I’m the Caregiver—How Long Do I Stay?

Items to Pack for the Stay-Over Caregiver

How Do I Find Housing?

Medical Issues:

Medical Insurance Help

Notes from the Insurance Warrior

Where Do I Send My Appeal?

Medical Billing Tracker

Things to Know About Medical Bills

Are Medical Bill Discounts Available?

What About My Insurance?

What Happens When I Change Insurance?

What Medical Notes Do I Need to Carry?

What If I Can’t Afford to Travel to a Specialist?

What About Clinical Trials?

What about the Legal Matters?

Advanced Directives and Documents

DNR Options\

Hope and Help Filled Websites

American Cancer Association

Understand the Diagnosis

National Orphan and Rare Diseases

How Do I Find Help for Funding?

We Can’t Afford to Travel

Book Order Form

Acknowledgements

The Shepherd’s Peace, Kat’s Journal

About the Author

About Dr. Brian Loggie

Foreword

This book is meant for all Caregivers. There is an emphasis on an uncommon cancer, pseudomyxoma peritonei or PMP, based on the personal experiences of the author. PMP is an orphan disease. This term is evocative of abandonment and loss. It also means this is an uncommon disorder for which there are not likely to be large trials establishing standards of care. Since PMP and other orphan diseases are confusing for many physicians, then how much more difficult it is for patients and their Caregivers to muddle through layers of information and misinformation? Kat Crawford was thrust into the difficult position of caregiver for her husband, Gary, after he was diagnosed with PMP and given a terminal prognosis. With Kat at his side, Gary was able to fight back quite literally from the brink of death. He is hale and hearty more than five years later. On the rare occasions he visits me, I tell the old curmudgeon he should be our poster person!

Caregivers are important in so many ways. The internet has become an important source of information and support, especially for orphan diseases. It is often the caregiver, or someone with whom they network, who finds treatment options and treatment centers. Unfortunately, my experience suggests that people should not assume their doctor will make appropriate recommendations and referrals for rare diseases. They may not know that certain options or programs with experience are available, especially if they are not locally available. Many doctors are simply time handicapped.

Caregivers assume tasks with little or no warning or preparation, starting with little or no knowledge about complex diseases or treatments or complications. They should not feel inhibited in addressing important issues with the medical care team. Some decisions may seem overwhelming. There may be a fork in the road for treatment and it is unclear about what is the best path. It is helpful to have a philosophy to guide decisions. My recommendation is to ask which strategy will most likely maintain or improve quality of life and performance status. The cancer treatment plan is subordinate to this. A functioning person is the emphasis and not a binary equation of disease present/absent. This simple decision tool has profound implications on all aspects of care. The benefits of this approach are longer and better survival, balance between over treatment and under treatment and the preservation of options over the long haul. So, this may mean opting for radical, dangerous surgery in certain circumstances. Or it may be time to take a vacation from doctors or drugs, and this may also be regarded as treatment!

Kat and Gary Crawford together entered a tunnel of darkness, sickness, pain and confusion. They emerged triumphant, vindicated, empowered, and knowledgeable. Not all will be so fortunate, but all Caregivers and patients can benefit from the Crawfords journey. Kat has recognized the daunting task of the caregiver in this book. Knowledge is power and it is not necessary to re-invent the wheel. Kat has generously shared knowledge that was learned the hard way. She has had the courage to share her personal insights into a profoundly emotional journey.

Dr. Brian Loggie, MD

Creighton Medical Center

Omaha, Nebraska

Introduction

When I stepped out of the air conditioned car in August 2002, an instant fog layered my glasses from the heavy Nebraska humidity. I swiped at them with a tissue a time or two on my walk from the driveway to the house. The stresses from my day in medical billing hung like a cloud around my head. My workday hadn’t gone well. I felt the need of peace in my world

The minute I opened the back door and stepped into the kitchen, Gary said, Mook, he called me the nickname he’d tagged me years before. What do you think about me taking early retirement?

Don’t even talk to me. I yanked the refrigerator door open. The blast of cold air cooled my steamy face, but not my temper. You’ll retire when you’re seventy or eighty if you’re lucky. I pulled out a covered bowl of leftovers and slammed