How to Help Children Through a Parent's Serious Illness Supportive, Practical Advice from a Leading Child Life Specialist

by McCue, Kathleen, M.A., C.C.L.S.; Bonn, Ron

• ISBN13: 9780312697686
• ISBN10: 0312697686
• Edition: 2nd
• Format: Paperback
• Copyright: 2011-12-20
• Publisher: St. Martin's Griffin

Summary

In the fifteen years since it was published, How To Help Children Through a Parent's Serious Illness has become the standard work on the subject. It offers supportive, practical advice, including what to tell children about their parent's illness, how to recognize early-warning signs in a child's drawings, sleep patterns, schoolwork and eating habits, and when and where to get professional help. But those fifteen years have brought new developments that will be explored in this greatly expanded new edition, including the dangers and opportunities of the Internet, a deep new understanding of hereditary diseases, the impact of the explosive growth in single-parent families, and new insights into how family trauma and mental illness may affect children.

Author Biography

KATHLEEN MCCUE, M.A., C.C.L.S. pioneered the care and treatment of children stressed by a parent’s grave illness in her renowned clinic and playroom at the Cleveland Clinic Foundation. She then founded and continues to direct the children’s program at The Gathering Place, a support center for families touched by cancer, in Cleveland.

This book is based on her lifetime of experience in the field she helped create.

 

RON BONN, a three-time Emmy Award winning television journalist for CBS News and NBC News, now teaches journalism at the University of San Diego.

Table of Contents

How to Help Children Through a Parent's Serious Illness

ONE

The First Day of the Rest of Your Life

Calvin and Hobbes by Bill Watterson

You hear the words: “You have cancer.” “You have M.S.” “You have a brain aneurysm.” “You need a heart transplant.” The first thing you think about is your own life. And the second thing is: “What will happen to my children?”

BALANCING YOUR NEEDS AND YOUR CHILDREN’S NEEDS

Here are two things that happened in our program at the Cleveland Clinic:

A young mother was being treated for cancer. She and her husband decided not to tell their nine-year-old son any details—too disturbing; why worry the boy? We’ll just say Mom is sick; she’ll be better soon.

But then the child began “acting out” in school—fighting with playmates, disrupting classes, falling behind. So the parents brought him to our program.

When I met him, the boy was grumpy—angry with his family, annoyed at being haled before a child life counselor. Yet behind all that he wanted to talk, and very soon he did talk.

He’d overheard his father on the telephone, speaking gravely with a relative. He’d heard the words “malignant melanoma” and suspected they had something to do with cancer. And he was furious. He explained why in three sentences: “They didn’t tell me everything. She’s my mother. I have the right to know what’s going on.”

The boy was absolutely correct. And what he said points up one of the central themes of this book: The children of seriously or gravely ill parents always have the right to know what’s going on. Not only is that knowledge their right; it is one of their greatest needs.

The second story involves a father, a successful and self-assured businessman recently diagnosed with lung cancer. Once again, the parents decided not to tell their children, a nine-year-old girl and a six-year-old boy. The parents were pretty sure the children knew anyway, and they were right.

The children always know. Or, at least, they always know something.

The normally cheerful little girl was constantly sad, suddenly breaking into tears. One night she begged her mother, “Whatever you do, tell me the truth. Tell me Daddy’s going to be okay.” Neither realized that the little girl was asking for two different things. So the mother did what she thought was right: She told her daughter something she wasn’t at all sure of: “Of course he’s going to be okay.”

The boy’s symptoms were even more disturbing: While previously he’d never shown much interest in toy guns and warfare, suddenly all his play was about killing. He ran around, indoors and out, making finger guns, shouting “Bang, bang, you’re dead.” Death was the constant message; of his sister he said, “I just wish she was dead.” The boy was now totally indifferent to his father; it was as if the father were not there.

Counseling the parents, I told them what to me was obvious, and what is the central message of this book:

You must tell your children the truth.

We’ll talk a good deal throughout this manual about why that’s so. But for the moment, here are three reasons:

1. Your children are affected by everything that happens in the family.

2. The more serious the situation, the more they will be impacted.

3. Lying to your children, in any way, will inevitably make things worse.

But this father resisted; he was adamant that his children not be told of his lung cancer, even though they obviously already knew. And finally he told me why:

“Don’t you understand? If I tell the children I have cancer, that means I really do. How can I fight this thing, keep a positive attitude, do what the doctors say I must do, if I acknowledge that?”

Like the reaction of the boy in the first story, the father’s reaction was absolutely normal. For anyone diagnosed with a serious illness, the first thought is for the self: How can I live and fight; how will I handle the long, intense, perhaps painful course of treatment; how can I cope with the possibility, however unlikely, that I may not survive?

For a while, everything revolves around the self. Only afterward come thoughts of family, of how this most personal crisis may impinge on the people we love. Yet the needs of those loved ones, particularly of our children, are immediate and pressing.

(In this case we reached a compromise: The father agreed that his wife should tell their children the full truth about his lung cancer. But she would also tell them, “Daddy can’t talk about it now.” Frequently, in the first days and weeks after diagnosis, it is the well parent who must deal most directly with children’s needs and questions. We found an acceptable interim solution, until the father could deal both with the disease and with his children—until he can “talk about it now.”)

Two needs collide: the patient’s need to do whatever it takes to try to survive (if that includes fantasy and magic, so be it) versus the child’s absolute, inescapable right and need to know the truth. The tension between those two needs is where this book begins.

MAKING YOUR CHILDREN PART OF YOUR TREATMENT

We believe very deeply that, when a parent is seriously ill, the children must be treated right along with the adult. Indeed, the children’s treatment is part of the parent’s treatment.

Ideally, treating your children begins on the day of diagnosis—the day you learn that you or your spouse has a serious, possibly life-threatening illness. That is the best moment to bring your children into the frightening picture.

But:

• It is almost never too late to start doing things the right way. Specifically, whatever point you may now have reached in your family medical crisis, whatever has already happened that may be creating problems for and with your children, right now is not too late to start handling things better. And that’s because:

• Mistakes made with love are easy to correct.

Avoiding the Biggest Mistake

The guiding principles, from the beginning to whatever the end may be, are openness and honesty.

Being honest can be painful. Nevertheless, dishonesty, even with the honorable goal of protecting the children, may be the single biggest mistake you as a parent can now make.

We are looking at the rest of your children’s lives. If they are deceived, lied to, “protected” from the truth, they will learn a lifelong lesson of distrust. There may be nothing more important in their lives than that they continue to trust the two people they love most—the parent who is sick and the parent who will continue to care for them.

Counselors, psychologists, and psychiatrists see them in their thirties and forties. And they say, “Doctor, I can’t love anyone.” And so often, when you look back, there was a real break in that love during that person’s childhood. Very often the break can be traced to the illness or death of a parent—a break never brought out and handled by the child.

Children Are Stronger Than You Think

There is one thing I count on absolutely in my work with families and that you can count on now: Your children love you. Because they love you, they can handle what is coming; they are much stronger than you think possible. What we must do now is build on that love and so build that strength.

As this medical crisis forces its way into your life and your children’s, what we will try to do is maintain a sense of trust and continuity of parenting—so that, whatever happens, your children retain their trust in the world and in the people who care for them and care about them.

THREE THINGS TO TELL YOUR CHILDREN

Whatever your children’s ages, what you are going to do at this point is:

• Tell them you are seriously ill.

• Tell them the name of your disease.

• Tell them your best understanding of what may happen.

(As we’ll see shortly, being honest does not mean telling everything. Children can absorb different levels of complexity at different ages, and you are the best judge of what your own child can understand. What it does mean, simply, is never telling anything but the truth.)

Before we go on to how to tell children at different ages, let me tell you one story that illustrates why they must be told.

A young mother was diagnosed with cancer. It was a kind of chronic leukemia whose treatment causes few visible symptoms; the parents decided they’d spare their nine-year-old daughter the worry. All the child knew was that Mom was going to the hospital now and again to get some medicine, not even staying overnight. No big deal.

One night, about two weeks after the mother was diagnosed, her daughter woke up in the middle of the night screaming.

She couldn’t move her legs.

The little girl was rushed to Children’s Hospital and evaluated thoroughly. There seemed to be no medical reason for her paralysis. The pediatrician—fortunately, a very good one—asked the mother whether anything was going on in the family. A new baby, marital problems, a move to a new house?

Nothing like that, she said, but there is one thing.

The pediatrician, who’d had no idea the mother was ill, told her that she must tell her daughter about the leukemia, tell her right now.

So together Mom and Dad told her the truth: Mom has cancer. It’s treatable and being treated. Mom honestly expects that she’ll be okay. And we’re sorry to tell you this while you’re sick, but we thought you should know.

The little girl said, “I’m glad you told me. I knew something was wrong. I thought maybe you were getting divorced.”

Within twelve hours she began to move her legs; two days later she was discharged from the hospital and has never had a recurrence. She still doesn’t understand why she became paralyzed, but she doesn’t have to understand it. She just needed to be treated with honesty.

A child can imagine much worse things than the truth.

THE THREE AGES OF CHILDHOOD

As we begin to talk about how and what to tell your children, we’ll divide them, very tentatively, into three overlapping age groups. Here as elsewhere, though, remember this: You are the expert on your own children . You know how they react, how mature they are, how they handle tough situations. When you think something’s wrong, something’s wrong. Follow your instincts; usually they won’t lead you astray.

The three age groups, which require somewhat different handling (though always within the framework of total honesty), are:

• Toddler through preschool, from about age two to six

• Latency, or school-age, from about five or six years to twelve years

• Adolescence, those terribly complicated teen years

Generally, the first and third group need the most delicate handling. Latency age is usually just that; the child’s potentials are latent. He or she tends to be a little better adjusted, a little better able to cope, than an older or younger sibling.

But remember, there are no neat lines in children’s growth or behavior; these age divisions are anything but absolute. Your child may, probably will, move back and forth between responses, may not even seem to fit his or her age group at all. These are general guidelines, and wherever your child fits in is normal for your child. And you, Mom or Dad, are the best judge.

Think about how we might tell a youngster in each group that a parent is seriously or gravely ill.

EXPLAINING YOUR ILLNESS TO YOUR PRESCHOOLER

The family: father, mother, six-year-old boy, three-and-a-half-year-old boy. The father was diagnosed with a brain tumor.

The younger boy was bright, verbal; his parents thought he could understand the situation. Each time we met, both boys were present. Naturally the big brother was the little one’s hero and role model. If the big boy looked sad, the little one knew he should look sad, and did.

At the first meeting, we talked about the brain and how it was like a computer, how it ran everything else. Both boys understood that and how important it was. You could tell by watching their faces.

We maintained their concentration, particularly the younger boy’s, by keeping everything very short—get the computer idea across, then play a little. With young children, that’s extremely important; they can understand, but their attention span is like a hummingbird’s.

And playing can be a marvelous tool. Take a doll or a stuffed animal. Say, “This is Daddy. Daddy’s very sick. What’s the matter with Daddy?”

Use the language your child uses. If an injury is a booboo, talk about booboos:

“Daddy’s got a booboo.”

“Where?”

“Up here, in his head.”

Take a nice bright Band-Aid, stick it on. “The doctors are going to try to fix Daddy’s booboo.”

A parent can use a doll or stuffed animal just as well as a psychologist can. If the sick parent can do the explaining himself or herself, that is simply wonderful for the child. Hard on the parent, perhaps, but good for the child. And perhaps good for the parent as well. If you are the one facing that gravely uncertain future, everything you can do for your children will probably add to your own comfort. That’s a thought we’ll keep coming back to.

 

There’s a difference between the three-and-a-half-year-old and the six-year-old. The parents told the older boy a little about the planned surgery, about the fact that the doctors were going to make an incision into Daddy’s head to try to make him better. The younger boy wouldn’t have understood about the incision; we left that out. Remember, being honest does not necessarily mean telling everything, where the child isn’t ready to understand. It means never telling anything but the truth.

(In later chapters we’ll talk about infants. You can’t “tell” them what’s going on. But in some very simple, important ways, you can make sure their world remains warm and secure in the midst of crisis.)

“I THINK I’VE RUINED HER LIFE”

Before we leave this earliest age group, let me tell you one of the stories that gives me my absolute conviction: It’s never too late to get things right for your children.

A young husband was beginning radiation therapy for lung cancer. In the corridor outside the treatment room, a nurse discovered his wife, sobbing. The nurse asked what was wrong. The woman murmured something about a five-year-old daughter. Then, quite clearly: “I think I’ve ruined her life.”

The radiology people called me. I asked the mother what had happened. This was her story:

The family had not told the little girl anything about her father’s illness. Five years old, they thought, was just too young. The morning before, Sunday, the family had gone to church. And the little girl had lit a candle and said this prayer: “God, please make Daddy’s cancer go away, so Mommy will stop crying.”

Mom and I sat and talked in the corridor for an hour. I told her what she might tell the little girl about her husband’s cancer:

• Daddy has a bad sickness.

• The sickness is called “cancer.”

• The doctors are treating Daddy now, and Daddy and I truly believe he will get better.

I assured her that a five-year-old could handle the situation. And I suggested some questions her little girl would almost certainly ask, questions we’ll consider in the next section.

Afterward, the three of them went home and held a family meeting. They cried a lot, but they talked it all through, honestly. The mother called me several weeks later and said: “That was all we needed. We’re communicating.”

I never saw the little girl. I didn’t have to.

Three Inevitable Questions

Sometimes I can predict the future.

I met with a father about to undergo radiation therapy for cancer. He had two children in the preschool and school-age range. I told him they would inevitably have three immediate worries that he and his wife would have to confront:

1. The children would suspect that somehow, by something they had done or hadn’t done, they had “caused” his cancer. This is called “magical thinking”; we’ll meet it again and again. Young children believe in their own omnipotence; what happens around them happens because of them. They can be overwhelmed by feelings of guilt for a situation totally outside their control.

2. The children would be afraid the illness was contagious, that by being with the parent, they too could “catch” cancer.

3. The children would want to know who would take care of them, who would do the “Daddy things” while Daddy was sick.

The father called me several weeks later and said, “I can’t believe my kids did all three of those things you said they’d do.” Not all at the same time or the same place, but in those weeks, all three of those questions came up repeatedly. They are the three universal concerns of children in those years.

The Three Right Answers

How do you handle the three universal concerns? Head-on, with unequivocal answers. And be prepared: They’ll come up again and again.

You don’t need to go into detail for the first two questions; what you can say is something perfectly straightforward, along these lines:

“We don’t know much about cancer. I don’t know for sure how I got it. But I do know two things:

“Nothing you ever did made me get it.

“You can’t get it from me. No one else can catch this cancer. This is something that’s going to affect just me.”

For the third concern, you will want to go into detail. And you’ll want to give it some thought.

Remember that, especially for younger children, routine equals security . The family’s routine is about to be disrupted, and you want to keep the disruption to a minimum for your children. Think about how you’ll maintain their routine: who’ll baby-sit when Mom takes Dad to the hospital; how will your children get to and from band practice, basketball practice, the party on Saturday night. Tell them, in detail.

At the same time, reassure your children that they have a role to play in taking care of the sick parent. In the next chapter we’ll talk about what some of those roles may be, but remember: They’re entitled to help.

EXPLAINING YOUR ILLNESS TO YOUR SIX- TO TWELVE-YEAR-OLD CHILDREN

In addition to wanting answers to the three inevitable questions, this latency-age group is going to want some detail about the illness. Starting at about age six, children become intensely interested in bodies, their own and other people’s. You can expect some pretty close questioning as to exactly what is wrong with you and what the doctors are going to do about it.

Tell the truth, without embarrassment. And try to get medical personnel to cooperate.

Want to See?

Ask the child: Would you like to see how the doctors are going to try to help Mom or Dad? Most young children jump at the chance; some of the older ones are a little more leery. Don’t press; the child must want to go and see.

When a parent in our hospital is to receive radiation treatment for cancer, or is awaiting an organ transplant, our therapists encourage them to bring their children along to the evaluation session. That’s when the technicians and the nurses show the children all around the floor, explain how the doctors and nurses will be taking care of Mom or Dad. Often they’ll take a doll or stuffed animal into the treatment area and “treat” it just as they will the parent.

If the intensive care unit is available, I like to take the children there, to get an idea of what will be done for Mom or Dad and to get the children accustomed to what goes on, so they’ll be prepared and will understand what’s happening when their own parent is lying there, surrounded by drips and monitors.

All this is important right now, but it’s also important in the long run: Whatever the outcome of the parent’s treatment, the child who receives this kind of respect and understanding is less likely to resent and fear medical professionals, less likely to resist treatment and so jeopardize his or her own life years from now.

EXPLAINING YOUR ILLNESS TO YOUR TEEN-AGERS

On the other hand, sometimes you can’t predict the future. Usually the first thing I say to the parents of adolescents is, “If I could predict how your teen-ager will respond to this, I’d be a miracle worker. Nobody ever knows how a teen-ager will respond.”

The fact is, a teen-ager facing a parent’s illness may go off in all kinds of different directions, and that’s okay—that’s normal.

A parent’s grave illness brings demands that most teens don’t even begin to know how to handle. As adolescents, they’re struggling to move away from the family. Now what should they do—move back and help, or run as fast as they can in the other direction? A parent’s illness can create acute levels of psychological and emotional conflict.

Information, Please

Most adolescents seem to need an enormous amount of information; they want to be treated pretty much as adults. Not only will they want the basic information of the diagnosis, but they’ll ask as well for the technical terminology, statistical information on survival rates; the depth of their questioning may astonish you. And you mustn’t duck.

Keeping the Faith

Of all the age groups, adolescents are the most sensitive to deception and dishonesty—the most likely to lose faith in adults. In a way, they want to lose faith in adults—it’s part of that normal process of moving away, into their own adulthood. So it’s very easy for them to pick up an evasion or a white lie and say, “Well, Dad’s a liar; I’m not going to believe anything he tells me.”

Privacy: Theirs and Yours

Privacy is a very important issue to teen-agers; you can’t force yourself inside their heads. You give the information and then wait: They may or may not talk to you. What’s important is that they have someone to talk to. So if you know your teen talks from the heart to a best friend, the parent of a pal, a teacher, a coach, a minister or rabbi, then encourage him or her to share this new crisis.

But there’s another consideration here: your own privacy. Probably you do not want the news of your illness “spread all over town.” And you have every right to set guidelines: It’s your family, your body, your illness. On the other hand, your teen-ager must have someone other than you to talk to. Keeping in mind those two sets of needs—your need for privacy, your teen-ager’s need to talk—is there someone you can personally share your crisis with, explain that your child knows what’s happening and may want to talk?

If you particularly do not want your son or daughter talking to teen-age friends, then you must be very clear about that from the outset—and you must give the child another outlet. A teen’s natural behavior is to go to other teens.

You can say quite honestly: “This is a very private illness. I don’t want everyone in town talking about me. I’ll be embarrassed if people treat me differently. So: I love you, I want you to know the truth, I know you need to talk, and here’s who you can talk to. But I don’t want this all over town, at least not yet.”

This is not dishonesty. It is family privacy. And it’s perfectly all right.

GIVING YOUR CHILDREN HOPE

However grave the illness, hope comes along with every diagnosis. And it is neither wrong nor dishonest to pass this hope along to your children. Your physician may tell you there is a 15 percent chance of survival. That gives you a chance; there is treatment and you’re determined to make the most of it. Other people have licked this thing, and you will too. That is what, being totally honest, you can tell your children. Give them your understanding of what’s happening and what can happen.

If you tell your children what you yourself truly believe and hope, even if there’s a somewhat different spin from what the doctors have said, then there is no dissonance; it fits. Only when you tell them something you don’t believe does the dissonance overwhelm their security and their confidence in you.

FEARS OF DYING: FIRST THOUGHTS

Faced with the news of a parent’s grave illness, all but the youngest children are going to wonder: Will you die?

They may or may not ask the question. They may ask it now or months from now. Nevertheless, however far the idea may be from your own thoughts, you must be prepared for the question. And to be prepared, you need to know what your child thinks death is.

A two- or three-year-old child may talk about death, may have a sense of its sadness. But the very young child could never really discuss it, never understand its consequences—above all, its finality.

By the time a child is at the middle of school age, around nine, ten, or eleven, he or she has come to grips with the central idea of death. Most children know, by this age, that death is final, that you don’t return from it, and that it is inevitable. It will happen to everyone.

Having an ill parent, who may die, probably forces children to tackle the issue sooner than they might otherwise. So what do they need from their parents?

They need to understand their‘parents’ beliefs about what death is and what may or may not come after. That means, for one thing, you will have to understand and be able to articulate your own beliefs. And, whether the subject comes up immediately, on that day of diagnosis, or months later, you will want to be careful.

MARCY’S MONSTER

Above is a picture, and its story:

A young father had died of cancer. He’d been treated in a local hospital, diagnosed as terminal, and simply sent home, with no support for him, for his wife, or for Marcy, their eight-year-old daughter. It was appalling care.

A few days later, at home, he died.

The hospital staff had given the mother virtually no meaningful information; she hadn’t known what to tell her daughter and so had told her nothing. Now, night after night, Marcy would wake up screaming; she was sleep-deprived, almost out of her mind with fear.

Because the child herself had once been a patient at our institution, we brought her into our program. In trying to find out what was wrong, I asked her to draw a picture.

What she drew was shocking: A little girl is alone in her bedroom. In through the window floats a demon figure. And then her story came out:

Marcy’s father had once been in trouble with the law. It wasn’t a major infraction; he’d been picked up and briefly jailed on a charge of driving under the influence of alcohol. But the family, deeply law-abiding and religious, had made a great fuss. And the little girl had picked up the idea:

When Daddy died, he’d go to hell.

Now the father she’d loved had become the monster of her picture. Every night, all night, she dreamed he was coming to take her to hell with him. She would try to run to her mother, but his fingers would aim a magic beam at her door, and it wouldn’t open. She would dream she was pulling at the door, screaming, as her demon/father flew down to grab her. And she would wake up screaming.

In the end, we worked through it. The mother explained to the little girl that her father had been a good man, that she herself deeply and truly believed he was now in heaven. (They also worked past another piece of bad advice. Someone had told the mother it would be wrong to let the troubled little girl sleep with her. We decided, under the circumstances, it was okay, at least until Marcy felt more secure. Follow your own instincts, not other people’s ideas.)

Feeling Free to Question

Above all, when the subject of death arises, your children will need the topic to be completely open, so that at any point from the first day on, they feel free to ask any question and have it answered honestly, without evasion, without embarrassment.

At some point, if a parent is truly at risk of dying, children need to understand the permanence of death and that someone who dies does not come back. It’s acceptable, it’s normal, for children to wish, to hope, to imagine that this time death will somehow be different. All you can do is remind them that it’s okay to wish, but the truth of the matter is that when people die, they don’t come back. And when your children are ready to make that leap, they will.

Something to Think About Now

All life is terminal. Even if one’s own timetable is tragically shortened by a medical diagnosis, the end is not yet. There is still time, time for children and parents who love each other to make the most of. Don’t try to shield your children from making the most of that time.

TELLING YOUR CHILDREN: A SUMMARY

All Children, All Ages

Tell them these three things:

• Mom or Dad is seriously ill.

• The name of the disease.

• Your best understanding of what may happen.

Preschool Age

Explain the disease on the child’s level.

• Use dolls or puppets to help.

• Don’t go past the child’s attention span.

• Don’t go beyond the child’s ability to understand.

School Age

Tell them three things, and keep telling them:

• Nothing they did caused the disease.

• They can’t catch the disease from you.

• Who’ll take care of their needs—who will do the “Mommy things” or the “Daddy things” now.

If possible, let them talk to the doctors and nurses and see where and how Mom or Dad will be treated.

 

Teen Age

Give lots of detailed information; answer every question fully.

Make sure there is someone outside the immediate family with whom they can talk on a continuing basis.

Be prepared for anything.

Copyright © 1994 by Kathleen McCue, M.A., C.C.L.S., with Ron Bonn.

Excerpts

How to Help Children Through a Parent's Serious Illness

ONE

The First Day of the Rest of Your Life

Calvin and Hobbes by Bill Watterson

You hear the words: “You have cancer.” “You have M.S.” “You have a brain aneurysm.” “You need a heart transplant.” The first thing you think about is your own life. And the second thing is: “What will happen to my children?”

BALANCING YOUR NEEDS AND YOUR CHILDREN’S NEEDS

Here are two things that happened in our program at the Cleveland Clinic:

A young mother was being treated for cancer. She and her husband decided not to tell their nine-year-old son any details—too disturbing; why worry the boy? We’ll just say Mom is sick; she’ll be better soon.

But then the child began “acting out” in school—fighting with playmates, disrupting classes, falling behind. So the parents brought him to our program.

When I met him, the boy was grumpy—angry with his family, annoyed at being haled before a child life counselor. Yet behind all that he wanted to talk, and very soon he did talk.

He’d overheard his father on the telephone, speaking gravely with a relative. He’d heard the words “malignant melanoma” and suspected they had something to do with cancer. And he was furious. He explained why in three sentences: “They didn’t tell me everything. She’s my mother. I have the right to know what’s going on.”

The boy was absolutely correct.And what he said points up one of the central themes of this book:The children of seriously or gravely ill parents always have the right to know what’s going on. Not only is that knowledge their right; it is one of their greatest needs.

The second story involves a father, a successful and self-assured businessman recently diagnosed with lung cancer. Once again, the parents decided not to tell their children, a nine-year-old girl and a six-year-old boy. The parents were pretty sure the children knew anyway, and they were right.

The children always know.Or, at least, they always knowsomething.

The normally cheerful little girl was constantly sad, suddenly breaking into tears. One night she begged her mother, “Whatever you do, tell me the truth. Tell me Daddy’s going to be okay.” Neither realized that the little girl was asking for two different things. So the mother did what she thought was right: She told her daughter something she wasn’t at all sure of: “Of course he’s going to be okay.”

The boy’s symptoms were even more disturbing: While previously he’d never shown much interest in toy guns and warfare, suddenly all his play was about killing. He ran around, indoors and out, making finger guns, shouting “Bang, bang, you’re dead.” Death was the constant message; of his sister he said, “I just wish she was dead.” The boy was now totally indifferent to his father; it was as if the father were not there.

Counseling the parents, I told them what to me was obvious, and what is the central message of this book:

You must tell your children the truth.

We’ll talk a good deal throughout this manual about why that’s so. But for the moment, here are three reasons:

1.Your children are affected by everything that happens in the family.

2. The more serious the situation, the more they will be impacted.

3. Lying to your children, in any way, will inevitably make things worse.

But this father resisted; he was adamant that his children not be told of his lung cancer,even though they obviously already knew.And finally he told me why:

“Don’t you understand? If I tell the children I have cancer, thatmeans I really do. How can I fight this thing, keep a positive attitude, do what the doctors say I must do, if I acknowledge that?”

Like the reaction of the boy in the first story, the father’s reaction was absolutely normal. Foranyonediagnosed with a serious illness, the first thought is for the self: How can I live and fight; how will I handle the long, intense, perhaps painful course of treatment; how can I cope with the possibility, however unlikely, that I may not survive?

For a while,everything revolves around the self.Only afterward come thoughts of family, of how this most personal crisis may impinge on the people we love. Yet the needs of those loved ones, particularly of our children, are immediate and pressing.

(In this case we reached a compromise: The father agreed that his wife should tell their children the full truth about his lung cancer. But she would also tell them, “Daddy can’t talk about it now.” Frequently, in the first days and weeks after diagnosis, it is the well parent who must deal most directly with children’s needs and questions. We found an acceptable interim solution, until the father could deal both with the disease and with his children—until hecan“talk about it now.”)

Two needs collide: the patient’s need to do whatever it takes to try to survive (if that includes fantasy and magic, so be it) versus the child’s absolute, inescapable right and need to know the truth. The tension between those two needs is where this book begins.

MAKING YOUR CHILDREN PART OF YOUR TREATMENT

We believe very deeply that, when a parent is seriously ill, the children must be treated right along with the adult. Indeed, the children’s treatment ispartof the parent’s treatment.

Ideally, treating your children begins on the day of diagnosis—the day you learn that you or your spouse has a serious, possibly life-threatening illness. That is the best moment to bring your children into the frightening picture.

But:

• It is almost never too late to start doing things the right way. Specifically, whatever point you may now have reached in your family medical crisis, whatever has already happened that may be creating problems for and with your children,right nowis not too late to start handling things better. And that’s because:

• Mistakes made with love are easy to correct.

Avoiding the Biggest Mistake

The guiding principles, from the beginning to whatever the end may be, areopennessandhonesty.

Being honest can be painful. Nevertheless, dishonesty, even with the honorable goal of protecting the children,may be the single biggest mistake you as a parent can now make.

We are looking at the rest of your children’s lives. If they are deceived, lied to, “protected” from the truth, they will learn a lifelong lesson of distrust. There may be nothing more important in their lives than that they continue to trust the two people they love most—the parent who is sick and the parent who will continue to care for them.

Counselors, psychologists, and psychiatrists see them in their thirties and forties. And they say, “Doctor, I can’t love anyone.” And so often, when you look back, there was a real break in that love during that person’s childhood. Very often the break can be traced to the illness or death of a parent—a break never brought out and handled by the child.

Children Are Stronger Than You Think

There is one thing I count on absolutely in my work with families and that you can count on now: Your children love you. Because they love you, they can handle what is coming; they are much stronger than you think possible. What we must do now is build on that love and so build that strength.

As this medical crisis forces its way into your life and your children’s, what we will try to do is maintain a sense of trust and continuity of parenting—so that, whatever happens, your children retain their trust in the world and in the people who care for them and care about them.

THREE THINGS TO TELL YOUR CHILDREN

Whatever your children’s ages, what you are going to do at this point is:

• Tell them you are seriously ill.

• Tell them thenameof your disease.

• Tell them your best understanding of what may happen.

(As we’ll see shortly, being honest does not mean telling everything. Children can absorb different levels of complexity at different ages, and you are the best judge of what your own child can understand. What itdoesmean, simply, is never telling anything but the truth.)

Before we go on tohowto tell children at different ages, let me tell you one story that illustrateswhythey must be told.

A young mother was diagnosed with cancer. It was a kind of chronic leukemia whose treatment causes few visible symptoms; the parents decided they’d spare their nine-year-old daughter the worry. All the child knew was that Mom was going to the hospital now and again to get some medicine, not even staying overnight. No big deal.

One night, about two weeks after the mother was diagnosed, her daughter woke up in the middle of the night screaming.

She couldn’t move her legs.

The little girl was rushed to Children’s Hospital and evaluated thoroughly. There seemed to be no medical reason for her paralysis. The pediatrician—fortunately, a very good one—asked the mother whether anything was going on in the family. A new baby, marital problems, a move to a new house?

Nothing like that, she said, but there is one thing.

The pediatrician, who’d had no idea the mother was ill, told her that shemusttell her daughter about the leukemia, tell herright now.

So together Mom and Dad told her the truth: Mom has cancer. It’s treatable and being treated. Mom honestly expects that she’ll be okay. And we’re sorry to tell you this while you’re sick, but we thought you should know.

The little girl said, “I’m glad you told me. I knew something was wrong.I thought maybe you were getting divorced.”

Within twelve hours she began to move her legs; two days later she was discharged from the hospital and has never had a recurrence. She still doesn’t understand why she became paralyzed, but she doesn’t have to understand it. She just needed to be treated with honesty.

A child can imagine much worse things than the truth.

THE THREE AGES OF CHILDHOOD

As we begin to talk about how and what to tell your children, we’ll divide them, very tentatively, into three overlapping age groups. Here as elsewhere, though, remember this:You are the expert on your own children. You know how they react, how mature they are, how they handle tough situations. When you think something’s wrong,something’s wrong.Follow your instincts; usually they won’t lead you astray.

The three age groups, which require somewhat different handling (though always within the framework of total honesty), are:

•Toddler through preschool,from about age two to six

•Latency,or school-age, from about five or six years to twelve years

•Adolescence,those terribly complicated teen years

Generally, the first and third group need the most delicate handling. Latency age is usually just that; the child’s potentials arelatent. He or she tends to be a little better adjusted, a little better able to cope, than an older or younger sibling.

But remember, there are no neat lines in children’s growth or behavior; these age divisions are anything but absolute. Your child may, probably will, move back and forth between responses, may not even seem to fit his or her age group at all. These are general guidelines, andwherever your child fits in is normal for your child.And you, Mom or Dad, are the best judge.

Think about how we might tell a youngster in each group that a parent is seriously or gravely ill.

EXPLAINING YOUR ILLNESS TO YOUR PRESCHOOLER

The family: father, mother, six-year-old boy, three-and-a-half-year-old boy. The father was diagnosed with a brain tumor.

The younger boy was bright, verbal; his parents thought he could understand the situation. Each time we met, both boys were present. Naturally the big brother was the little one’s hero and role model. If the big boy looked sad, the little one knew he should look sad, and did.

At the first meeting, we talked about the brain and how it was like a computer, how it ran everything else. Both boys understood that and how important it was. You could tell by watching their faces.

We maintained their concentration, particularly the younger boy’s, by keeping everything very short—get the computer idea across, then play a little. With young children, that’s extremely important; they can understand, but their attention span is like a hummingbird’s.

And playing can be a marvelous tool. Take a doll or a stuffed animal. Say, “This is Daddy. Daddy’s very sick. What’s the matter with Daddy?”

Use the language your child uses. If an injury is a booboo, talk about booboos:

“Daddy’s got a booboo.”

“Where?”

“Up here, in his head.”

Take a nice bright Band-Aid, stick it on. “The doctors are going to try to fix Daddy’s booboo.”

A parent can use a doll or stuffed animal just as well as a psychologist can. If the sick parent can do the explaining himself or herself, that is simply wonderful for the child. Hard on the parent, perhaps, but good for the child. And perhaps good for the parent as well. If you are the one facing that gravely uncertain future, everything you can do for your children will probably add to your own comfort. That’s a thought we’ll keep coming back to.

 

There’s a difference between the three-and-a-half-year-old and the six-year-old. The parents told the older boy a little about the planned surgery, about the fact that the doctors were going to make an incision into Daddy’s head to try to make him better. The younger boy wouldn’t have understood about the incision; we left that out. Remember, being honest does not necessarily mean tellingeverything,where the child isn’t ready to understand. It means never telling anything but the truth.

(In later chapters we’ll talk about infants. You can’t “tell” them what’s going on. But in some very simple, important ways, you can make sure their world remains warm and secure in the midst of crisis.)

“I THINK I’VE RUINED HER LIFE”

Before we leave this earliest age group, let me tell you one of the stories that gives me my absolute conviction: It’s never too late to get things right for your children.

A young husband was beginning radiation therapy for lung cancer. In the corridor outside the treatment room, a nurse discovered his wife, sobbing. The nurse asked what was wrong. The woman murmured something about a five-year-old daughter. Then, quite clearly: “I think I’ve ruined her life.”

The radiology people called me. I asked the mother what had happened. This was her story:

The family had not told the little girl anything about her father’s illness. Five years old, they thought, was just too young. The morning before, Sunday, the family had gone to church. And the little girl had lit a candle and said this prayer: “God, please make Daddy’s cancer go away, so Mommy will stop crying.”

Mom and I sat and talked in the corridor for an hour. I told her what she might tell the little girl about her husband’s cancer:

• Daddy has a bad sickness.

• The sickness is called “cancer.”

• The doctors are treating Daddy now, and Daddy and I truly believe he will get better.

I assured her that a five-year-old could handle the situation. And I suggested some questions her little girl would almost certainly ask, questions we’ll consider in the next section.

Afterward, the three of them went home and held a family meeting. They cried a lot, but they talked it all through, honestly. The mother called me several weeks later and said: “That was all we needed. We’re communicating.”

I never saw the little girl. I didn’t have to.

Three Inevitable Questions

Sometimes I can predict the future.

I met with a father about to undergo radiation therapy for cancer. He had two children in the preschool and school-age range. I told him they would inevitably have three immediate worries that he and his wife would have to confront:

1. The children would suspect that somehow, by something they had done or hadn’t done, they had “caused” his cancer. This is called “magical thinking”; we’ll meet it again and again. Young children believe in their own omnipotence; what happens around them happensbecause of them.They can be overwhelmed by feelings of guilt for a situation totally outside their control.

2. The children would be afraid the illness was contagious, that by being with the parent, they too could “catch” cancer.

3. The children would want to know who would take care of them, who would do the “Daddy things” while Daddy was sick.

The father called me several weeks later and said, “I can’t believe my kids did all three of those things you said they’d do.” Not all at the same time or the same place, but in those weeks, all three of those questions came up repeatedly.They are the three universal concerns of children in those years.

The Three Right Answers

How do you handle the three universal concerns? Head-on, with unequivocal answers. And be prepared: They’ll come up again and again.

You don’t need to go into detail for the first two questions; what you can say is something perfectly straightforward, along these lines:

“We don’t know much about cancer. I don’t know for sure how I got it. But I do know two things:

“Nothing you ever did made me get it.

“You can’t get it from me. No one else can catch this cancer. This is something that’s going to affect just me.”

For the third concern, youwillwant to go into detail. And you’ll want to give it some thought.

Remember that, especially for younger children,routine equals security. The family’s routine is about to be disrupted, and you want to keep the disruption to a minimum for your children. Think about how you’ll maintain their routine: who’ll baby-sit when Mom takes Dad to the hospital; how will your children get to and from band practice, basketball practice, the party on Saturday night. Tell them, in detail.

At the same time, reassure your children that they have a role to play in taking care of the sick parent. In the next chapter we’ll talk about what some of those roles may be, but remember:They’re entitled to help.

EXPLAINING YOUR ILLNESS TO YOUR SIX- TO TWELVE-YEAR-OLD CHILDREN

In addition to wanting answers to the three inevitable questions, this latency-age group is going to want some detail about the illness. Starting at about age six, children become intensely interested in bodies, their own and other people’s. You can expect some pretty close questioning as to exactly what is wrong with you and what the doctors are going to do about it.

Tell the truth, without embarrassment. And try to get medical personnel to cooperate.

Want to See?

Ask the child: Would you like to see how the doctors are going to try to help Mom or Dad? Most young children jump at the chance; some of the older ones are a little more leery. Don’t press; the child mustwantto go and see.

When a parent in our hospital is to receive radiation treatment for cancer, or is awaiting an organ transplant, our therapists encourage them to bring their children along to the evaluation session. That’s when the technicians and the nurses show the children all around the floor, explain how the doctors and nurses will be taking care of Mom or Dad. Often they’ll take a doll or stuffed animal into the treatment area and “treat” it just as they will the parent.

If the intensive care unit is available, I like to take the children there, to get an idea of what will be done for Mom or Dad and to get the children accustomed to what goes on, so they’ll be prepared and will understand what’s happening when their own parent is lying there, surrounded by drips and monitors.

All this is important right now, but it’s also important in the long run: Whatever the outcome of the parent’s treatment, the child who receives this kind of respect and understanding is less likely to resent and fear medical professionals, less likely to resist treatment and so jeopardize his or her own life years from now.

EXPLAINING YOUR ILLNESS TO YOUR TEEN-AGERS

On the other hand, sometimes youcan’tpredict the future. Usually the first thing I say to the parents of adolescents is, “If I could predict how your teen-ager will respond to this, I’d be a miracle worker. Nobody ever knows how a teen-ager will respond.”

The fact is, a teen-ager facing a parent’s illness may go off in all kinds of different directions, and that’s okay—that’s normal.

A parent’s grave illness brings demands that most teens don’t even begin to know how to handle. As adolescents, they’re struggling to move away from the family. Now what should they do—move back and help, or run as fast as they can in the other direction? A parent’s illness can create acute levels of psychological and emotional conflict.

Information, Please

Most adolescents seem to need an enormous amount of information; they want to be treated pretty much as adults. Not only will they want the basic information of the diagnosis, but they’ll ask as well for the technical terminology, statistical information on survival rates; the depth of their questioning may astonish you. And you mustn’t duck.

Keeping the Faith

Of all the age groups, adolescents are the most sensitive to deception and dishonesty—the most likely to lose faith in adults. In a way,they want to lose faith in adults—it’s part of that normal process of moving away, into their own adulthood. So it’s very easy for them to pick up an evasion or a white lie and say, “Well, Dad’s a liar; I’m not going to believe anything he tells me.”

Privacy: Theirs and Yours

Privacy is a very important issue to teen-agers; you can’t force yourself inside their heads. You give the information and then wait: They may or may not talk to you. What’s important is that they havesomeoneto talk to. So if you know your teen talks from the heart to a best friend, the parent of a pal, a teacher, a coach, a minister or rabbi, then encourage him or her to share this new crisis.

But there’s another consideration here: your own privacy. Probably you do not want the news of your illness “spread all over town.” And you have every right to set guidelines: It’syourfamily,yourbody,yourillness. On the other hand, your teen-agermusthave someone other than you to talk to. Keeping in mind those two sets of needs—your need for privacy, your teen-ager’s need to talk—is there someone you can personally share your crisis with, explain that your child knows what’s happening and may want to talk?

If you particularly donotwant your son or daughter talking to teen-age friends,then you must be very clear about that from the outset—and you must give the child another outlet. A teen’s natural behavior is to go to other teens.

You can say quite honestly: “This is a very private illness. I don’t want everyone in town talking about me. I’ll be embarrassed if people treat me differently. So: I love you, I want you to know the truth, I know you need to talk, and here’s who you can talk to. But I don’t want this all over town, at least not yet.”

This is not dishonesty. It is family privacy. And it’s perfectly all right.

GIVING YOUR CHILDREN HOPE

However grave the illness, hope comes along with every diagnosis. And it is neither wrong nor dishonest to pass this hope along to your children. Your physician may tell you there is a 15 percent chance of survival. That gives you achance;there is treatment and you’re determined to make the most of it. Other people have licked this thing, and you will too. That is what, being totally honest, you can tell your children. Give themyour understandingof what’s happening and what can happen.

If you tell your children what you yourself truly believe and hope, even if there’s a somewhat different spin from what the doctors have said, then there is no dissonance; it fits. Only when you tell them something youdon’tbelieve does the dissonance overwhelm their security and their confidence in you.

FEARS OF DYING: FIRST THOUGHTS

Faced with the news of a parent’s grave illness, all but the youngest children are going to wonder:Will you die?

They may or may not ask the question. They may ask it now or months from now. Nevertheless, however far the idea may be from your own thoughts, you must be prepared for the question. And to be prepared,you need to know what your child thinks death is.

A two- or three-year-old child may talk about death, may have a sense of its sadness. But the very young child could never really discuss it, never understand its consequences—above all, its finality.

By the time a child is at the middle of school age, around nine, ten, or eleven, he or she has come to grips with the central idea of death. Most children know, by this age, that death is final, that you don’t return from it, and that it is inevitable. It will happen to everyone.

Having an ill parent, who may die, probably forces children to tackle the issue sooner than they might otherwise. So what do they need from their parents?

They need to understand their‘parents’ beliefs about what death is and what may or may not come after. That means, for one thing, you will have to understand and be able to articulate your own beliefs. And, whether the subject comes up immediately, on that day of diagnosis, or months later, you will want to be careful.

MARCY’S MONSTER

Above is a picture, and its story:

A young father had died of cancer. He’d been treated in a local hospital, diagnosed as terminal, and simply sent home, with no support for him, for his wife, or for Marcy, their eight-year-old daughter. It was appalling care.

A few days later, at home, he died.

The hospital staff had given the mother virtually no meaningful information; she hadn’t known what to tell her daughter and so had told her nothing. Now, night after night, Marcy would wake up screaming; she was sleep-deprived, almost out of her mind with fear.

Because the child herself had once been a patient at our institution, we brought her into our program. In trying to find out what was wrong, I asked her to draw a picture.

What she drew was shocking: A little girl is alone in her bedroom. In through the window floats a demon figure. And then her story came out:

Marcy’s father had once been in trouble with the law. It wasn’t a major infraction; he’d been picked up and briefly jailed on a charge of driving under the influence of alcohol. But the family, deeply law-abiding and religious, had made a great fuss. And the little girl had picked up the idea:

When Daddy died, he’d go to hell.

Now the father she’d loved had become the monster of her picture. Every night, all night, she dreamed he was coming to take her to hell with him. She would try to run to her mother, but his fingers would aim a magic beam at her door, and it wouldn’t open. She would dream she was pulling at the door, screaming, as her demon/father flew down to grab her. And she would wake up screaming.

In the end, we worked through it. The mother explained to the little girl that her father had been a good man, that she herself deeply and truly believed he was now in heaven. (They also worked past another piece of bad advice. Someone had told the mother it would be wrong to let the troubled little girl sleep with her. We decided, under the circumstances, it was okay, at least until Marcy felt more secure. Follow your own instincts, not other people’s ideas.)

Feeling Free to Question

Above all, when the subject of death arises, your children will need the topic to be completely open, so that at any point from the first day on, they feel free to ask any question and have it answered honestly, without evasion, without embarrassment.

At some point, if a parent is truly at risk of dying, children need to understand the permanence of death and that someone who dies does not come back. It’s acceptable, it’s normal, for children to wish, to hope, to imagine that this time death will somehow be different. All you can do is remind them that it’s okay to wish, but the truth of the matter is that when people die, they don’t come back. And when your children are ready to make that leap, they will.

Something to Think About Now

All life is terminal. Even if one’s own timetable is tragically shortened by a medical diagnosis, the end is not yet. There is still time, time for children and parents who love each other to make the most of. Don’t try to shield your children from making the most of that time.

TELLING YOUR CHILDREN: A SUMMARY

All Children, All Ages

Tell them these three things:

• Mom or Dad is seriously ill.

• The name of the disease.

• Your best understanding of what may happen.

Preschool Age

Explain the disease on the child’s level.

• Use dolls or puppets to help.

• Don’t go past the child’s attention span.

• Don’t go beyond the child’s ability to understand.

School Age

Tell them three things, and keep telling them:

• Nothing they did caused the disease.

• They can’t catch the disease from you.

• Who’ll take care of their needs—who will do the “Mommy things” or the “Daddy things” now.

If possible, let them talk to the doctors and nurses and see where and how Mom or Dad will be treated.

 

Teen Age

Give lots of detailed information; answer every question fully.

Make sure there is someone outside the immediate family with whom they can talk on a continuing basis.

Be prepared for anything.

Copyright © 1994 by Kathleen McCue, M.A., C.C.L.S., with Ron Bonn.