Ways You Can Help

THERE ARE WAYS YOU CAN HELP WHEN ILLNESS STRIKES… THIS BOOK SHOWS YOU HOW!

For the Surgery Patient

You can help patients facing surgery by getting them organized at home, pitching in with household chores that may pile up during illness (even doing laundry is a plus), preparing meals, and creating care alternatives for the recovery period.

For the Terminal Patient

It's important to make patients with serious or terminal conditions feel like they are a vital part of the family, community, or group of friends. There are many ways to do this: stay in contact, organize a support system of friends, co-workers, or members of organizations to which the patient belongs; spruce up the patient's quarters..

For the Caregiver

Often the most thoughtful gift for the caregiver is time: time to get away, to renew one's energies, to move beyond the immediate situation. If you are willing to spend time in the sick room, offer to sit with the patient while the caregiver takes a break. Even an hour can mean a lot. An evening out is even better.

WAYS YOU CAN HELP

"Marvelously creative suggestions everyone can use. I recommend

WAYS YOU CAN HELP with all my heart!"

—Robert E. Kowalski, author of 8 Steps to a Healthy Heart and The 8- Week Cholesterol Cure

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Copyright

Copyright © 1996 by Margaret R. Cooke

All rights reserved.

Warner Books, Inc.

Hachette Book Group

237 Park Avenue

New York, NY 10017

Visit our website at www.HachetteBookGroup.com

First eBook Edition: October 2009

ISBN: 978-0-446-56870-8

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Dedicated to
Nicholas

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Acknowledgments

Many people have contributed to this book with their experiences, good and bad. We met them in hospital waiting rooms, clinics, and support groups. Each had a special story to tell. In some cases we will never know their names as the stories grew out of casual conversations before this book was even an idea; others were related by friends and coworkers who had particular experiences they wanted to share. We offer a special thank you to everyone who helped in the creation of this book.

The following people should receive special recognition for their contributions:

Marie Kingdon for the wealth of ideas she offered and her support throughout the project.

Beth Ferguson who loaned the computer on which this book was written. It literally would not have been done without her.

Mary Elizabeth Low and Ray Joseph who provided invaluable advise and support.

Jackie and Jill Black, Maggie Miller, Sandy Svec, and Karen Wenk who provided perspective and an extensive account of their personal experiences.

And a special thank you to our editors, Anne Hamilton and Diana Baroni.

In memory of John Kingdon and John Putman.

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FOREWORD: OUR STORY

The date was Thursday, June 17, 1993; it was 4:20 P.M. I had just walked into my office from a series of meetings when my secretary said that Buffy, my niece who lived in town, was on the line. Strange, I thought; she usually calls me directly on the phone at my desk, rather than bothering my secretary with a family call.

Buffy needed a favor. Would I pick up the children from her pediatrician's office and let them play at my house while she and her husband, Dan, met with the doctor?

I was out the door before I considered the obvious question "Why did the doctor want to talk with them?" I thought about nothing else as I drove across town. Buffy and the children—Jessica, seven, and Nicholas, three—were in the parking lot when I arrived. She was as serious as I'd ever seen her, and offered few details.

I learned that Dan had taken Nicholas to the doctor for his routine three-year-old well-baby exam and that the blood test results were not right. The doctor then asked to speak to both parents and suggested that someone take the children for a while. I arrived at five o'clock—dinnertime—so I decided to take the children to McDonald's, and Buffy agreed to meet us there after the meeting.

We selected one of Nicholas's favorite spots, the McDonald's that featured Oldsmobile products built in Lansing. I thought the displays and decorations would keep the children occupied if their parents' meeting ran longer than expected. We found an empty booth decorated with headlights and running boards. We ordered, ate dinner, and enjoyed the surroundings. We were in no hurry. But Buffy and Dan did not arrive. We ordered dessert; still no sign of them.

We had exhausted all the restaurant had to offer, so we went on to my house, which was nearby. We played with the toys I kept for the children's visits, then the piano, the dog; we even went for a walk. Nicholas grew tired, so we had to turn back. It was seven thirty, and still no parents. My stomach was in knots, and the novelty of visiting Aunt Margie had worn off long ago for the children.

Then the phone rang. In a very flat voice, Buffy explained that the blood test showed that Nicholas had leukemia, and they would be taking him to the hospital that evening to begin treatment. They were packing his things now; could Jessica stay with me?

Thus began our family saga.

On the day of the diagnosis, Buffy's parents were in Switzerland and Dan's mother was in California. Buffy's brother, John, and his wife, Katie, were the only other relatives in the area, and they were an hour away.

After Buffy and Dan picked up Nicholas, Jessica and I tried to make sense of what had occurred. It had all happened so suddenly. Nick had not been sick. They had just gone to the doctor for a checkup.

I knew Buffy and Dan needed someone with them at the hospital, and I thought of the rector from our church. Who better at a time like this? I realized it would be difficult to explain the situation with Jessica sitting next to me, so I called Marie, a special friend from church, and gave her a brief outline of Nick's condition. She understood immediately what was needed and made the call to the rector. He went directly to the hospital.

John and Katie arrived later that evening and took over Buffy's house, cleaning, doing the laundry, and caring for the dog.

The next morning Marie arrived at my house with a fresh fruit plate, her VHS VCR so I could rent movies for Jessica (I had a Beta), and a toy for Nicholas. Then she cleaned the kitchen so Jessica and I could write a story for Nick. My work staff arrived later with a huge plate of cold cuts, assorted breads, pickles, potato chips, and two dozen chocolate chip cookies. This plate kept the whole family in sandwiches for days!

As the word spread, friends and acquaintances called Buffy's home and mine with offers of help. It was clear that people wanted to support our family and to assist in any way they could. Some brought food or provided other assistance without being told, but most did not know specifically what to do. They wanted direction and guidance from the family, but we were too involved with our crisis to provide the needed direction.

Nick was in the hospital for over a month, and after a few days the crisis became the routine. The grandparents arrived, the church organized a committee to provide dinners, and many friends offered help in more ways than we ever dreamed possible. Yet it was also striking how many people truly wanted to help but held back through fear of intruding, overstepping, or doing the wrong thing. They wanted to know what would be useful before they did anything, for fear of making a mistake. Later we heard that some were afraid they didn't know us well enough to step in at such a personal time.

Perhaps in the days of large extended families, there was not the need for help from friends and acquaintances at times of family emergencies. In the nineties, however, families are spread all over the country, even the world. We must depend on neighbors, friends, and coworkers to fill the support gap.

One night it came to me—why not write a book about ways people can help when illness strikes someone close to them. We would offer simple, practical advice for reaching out to those who are ill and to their families.

I knew we had the qualifications to write this book. My father was a diabetic. I had rheumatic fever as a child and was diagnosed with multiple sclerosis in 1980. I also had major surgery a few years ago. My mother was ill for several years with heart trouble, and my grandmother and uncle both needed nursing home care. Dan's father died after a long bout with cancer. At many times in our lives we had needed the support of others, and it had been there. It seemed that this book would be a way for our family to heal from the tragedy of Nicholas's illness and give a gift to others based on our experience.

We are pleased to report that Nicholas is in remission and is getting along very well. He had several months of intensive chemotherapy, but is now in a maintenance phase of chemotherapy, which will last for two more years. He is a normal, active boy, into Power Rangers and Teenage Mutant Ninja Turtles, and he recently celebrated his fifth birthday.

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Introduction

Your neighbor's child is diagnosed with a life-threatening illness. An older friend enters a nursing home. Chronic disease strikes a member of your family. A coworker has a heart attack.

What can you do to help?

Whether the person who is ill is a close friend, a relative, an acquaintance you don't know well but like a lot, or a coworker, it is natural to want to reach out, to make it better or at least to let her know you care. Yet often we are hesitant to act. We don't know what to do or are concerned we'll do the wrong thing. We don't want to intrude. We feel we might get in the way, or we assume the family has other people helping who know them better than we do. Perhaps we feel we have been out of touch too long and that it would be inappropriate to call when something bad has happened. "She wouldn't want to hear from me now."

Sound familiar? Many of us have limiting thoughts that keep us from reaching out when we are truly needed.

If you're one of those people, this book is for you. In addition to presenting numerous ways you can help, we also hope to give you the permission and confidence you need to offer that help.

What we heard again and again from both patients and their families was that any gesture is appreciated—from a greeting card, to making dinner, to some of the more creative ideas we discuss in this book. No one kept track of how long it had been since they'd heard from that friend. It truly is the thought that counts.

The other message that came through loud and clear was "Just do it!" People in crisis are not able to give direction on things that need to be done. If they are lucky, a friend or relative is able to take charge, but more often the family just muddles through as best they can.

Ways You Can Help presents concrete, practical ideas that can be used when help is needed. Many of the ideas are not new but are included as reminders and as a handy reference for things both small and large that can make a difference.

The book is divided by age—children, teenagers, and adults—and by circumstances—long-term illness, new baby, nursing homes, and the chronically and terminally ill. It will help you provide support for the family of a person who is ill and for the primary caregiver, the siblings, or the children of the patient, and offers tips on visiting. Also included is a discussion of situations when it is difficult to offer help and special situations that require innovative solutions.

It is important to realize that many of the ideas presented will apply in several different circumstances. For instance, while a child will love a life-size balloon figure, an adult might also find that same balloon a great gift.

The categories were designed to make the book easy to use and to ensure that the ideas presented are appropriate for each situation. To gain the maximum value from the book, however, we recommend that you browse through the entire contents, as you may find just the right idea for your particular circumstance where you least expect it.

In writing a book of this kind, we had to consider all situations and circumstances; therefore, we approached the topic from the assumption that the patient was alone or had no one, no spouse or other live-in helper, to perform needed tasks like errands and housekeeping. In this way we were able to provide the broadest range of ideas for ways to help.

The use of proper pronouns is a challenge to the nineties writer. In an effort to create a text that is as clear as possible, the gender pronouns "he" and "she" have been alternated by chapter. In each case the pronoun is meant to refer to both men and women. When gender-specific ideas are presented, they are labeled as such.

We have tried to keep repetition to a minimum, but in some cases it was necessary to include similar ideas in more than one chapter, because they are appropriate in several circumstances.

Many anecdotes are from our personal experience, while others are stories shared with us by people who have faced similar situations. The names that are used have been changed so as not to embarrass anyone who shared experiences with us. We have found that while each individual story is unique, the need for help is universal.

We hope you will find Ways You Can Help a useful tool to assist you in providing support and assistance to families and friends in need. It has been a labor of love.

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Chapter One

When a Child Is Ill

 

Being a sick child is no fun—not for the child, not for the parents, and not for the other family and friends who try to help.

The normally active child must now stay in bed or be confined to his house. A very young child won't understand why he can't play with his friends, while an older child often feels isolated and left out.

Anyone who has attempted to keep a child entertained at home for several days or weeks knows what a true challenge is. Finding creative alternatives to keep the child from becoming bored is a full-time job. Fresh ideas, faces, and activities are essential.

Mail a Greeting

All children love to receive letters and cards. Cards require little time to send but mean so much to the child at home.

A friend of mine from work sent Nicholas several cards when he was undergoing chemotherapy. He didn't know her, but was thrilled each time her card arrived. That's the nice thing about cards; you don't have to know a child well to send one. If you learn that a friend or coworker's child is ailing, just drop a card in the mail. It's a small effort with a big reward.

Make It a Habit

If possible, send cards regularly throughout an illness. For instance, send one every Monday. Or consider sending a card every day the child is in the hospital.