One of the toughest aspects of dealing with cancer is knowing how to be a good parent while feeling like you are crumbling inside. I stumbles across this article and it helped a little. I posted all of it as links tend to stop working after a while and I may want to revisit it often as our journey along this rock road continues.
The parent of the child with cancer: coping strategies
John J. Spinetta
San Diego State University
Paper presented at the 30th Meeting of the International Society of Pediatric Oncology (SIOP)
Yokohama, Japan (4 Oct 98), ICCCPO Meeting
It is a pleasure to be here speaking with you today. I know that there are some physicians, nurses, social workers and other health care professonals in the audience today. Please forgive me if I ignore you. I am going to speak directly to the parents.
The first thing I want to say to the parents is that you are the experts. You are the individuals who know your child best; you are the ones who know what your family is suffering; you are the ones who are carrying the burden of the illness and its treatment. I hope that you won't just sit there and listen as I talk; I hope today to initiate a discussion. My wish is that you will share your own experiences with one another later this morning, this afternoon, and during the next two days of meetings.
One of the basic assumptions in psychology is that it is much better to talk with someone about a problem than it is to keep it inside. This is something that human beings have done for centuries. When you have a burden and you share that burden with someone else, somehow the burden becomes lighter. This, of course, is why parents of children with cancer meet with one another, so that they can share their burdens with other parents who are going through a similar experience.
What I am going to talk about with you today is why it is beneficial for your children also to have someone to talk to about the illness. If you are accustomed to protecting your child from awareness of the illness, this will not be a comfortable topic.
One very interesting thing about children is how difficult it is to fool them. We cannot try to hide the truth and have children not find out anyway. When the diagnosis is made, children see their mother crying, they see their father crying, they hear sad whispers, they overhear a telephone conversation with aunt or uncle or grandparents, they hear other children talking in the hospital. And when the child asks you, the mother or father, "Am I okay?" you say "Sure, everything is fine." At that moment, you have broken a trust, a sacred trust, with your child. Children not only have a right to know the truth, that have a right to hear the truth from you, their parents.
Now, what do you mean by truth? We adults are strange creatures. We live in the future and we live in the past. We worry about things that may never happen, and we continue to bring with us painful memories of things that have happened in the past. Children on the other hand live in the present. It is only when children are about ten or eleven years of age that they are really able to communicate with their parents at an adult level using adult language. Before then, children have a very difficult time with words. But the children still feel hurt and pain, just as much as do the adults. Children look at their mother's face, children look at their father's face, and they know that something serious is happening. In this way, the children sense the severity of the illness, even when they are only 2 or 3 or 4 years of age. And so the difficulty in talking to your younger children is for you to figure out how to share with them enough truth to make sure they understand what is happening, but not so much that you overwhelm them. You don't need to share with your child the adult kind of truth, the one that contains the past and the future. You do need to share what the child can understand. For child of 3 or 4 or 5, for example, just knowing that he or she is going to the hospital that day for treatment is very important and quite sufficient. The child does not have to know that this treatment will last for at least two years, nor does the child have to know of the potential fatality of the illness. Above all, the child does not need to pick up a parent's sense of pessimism. The children are living in the present. For an adult, 2 years is a short time; for a child, 2 years is an eternity.
Something else about children: when they are young, children like to hear stories. They like to hear fables. That way the children can remain at a safe distance from the truths in the story. In a similar manner, if I ask a child directly "How are you?" the child will answer, "I'm fine." If I ask the same child the question "How is your friend who is in the hospital room with you?" the child will typically tell me all sorts of things about this friend in the hospital room, things the child feels about himself but can more safely express about a friend. Children are very aware of what's happening around them. By using parables and stories with children, you can share with them at a safe psychological distance your own feelings about what's happening without all of the intensity of your own burdens.
When as an adult you try to communicate with another adult, you say "Let's talk" and then you sit down and you talk. That style of communication does not work very well with children. With children, you must open the door to communication slowly, and let them know you are willing to talk. But it is they who have to enter your door, and they will do so only when they are ready. Communication with a child does not mean talking; communication with a child means listening. Communication with a child means listening carefully to what the child's needs are at the moment. If an adult feels that telling the truth means burdening the child with all of the adult's fears, than the adult will say nothing. But if the adult appreciates that the child does not want all of the adults' fears, but wants the truth at a level the child can comprehend and tolerate, than the adult can slowly begin to open the door to communication with the child.
Now, if in some cultures the word "cancer" for the general public means death, then one might hesitate to use that word with the child. However the child will hear the word anyway. You should use cancer-specific words like "leukemia" or "solid tumor." For your younger children, you might say something like "blood disease." But always tell the truth. You should never lie with the words you are using with your children. Why? Because they will find out anyway. Eventually they will know. If your child finds out from you that he or she has leukemia, for example, you can share with your child your own hope that he or she will be one of the cured. You can share your optimism with them. If, however, your child finds out from someone else, the child may conclude with the common misunderstanding: "Leukemia means cancer, and cancer means death." You will have placed a much heavier burden on your child by not talking about the cancer than you would have by talking about it. You can't fool children. They sense that something serious is happening, no matter how clever you think you are in keeping the truth from them.
Not only can you not fool children, but there comes a time when it is no longer possible to keep up the pretense. Increasingly, physicians are asking that long-term survivors of childhood cancer come back for follow-up clinic visits. That means that you will have to bring your children who were then 4 or 5 years old back to the hospital when they are 9 or 11 or 14. If you didn't tell them at the beginning that they had a form of cancer, when do you tell them? Will you wait until they find out for sure by themselves what they had always suspected? The longer you wait, the more difficult it becomes to tell them the truth, and by then they will have lost confidence and trust in you. Part of the total cure in pediatric hematology and oncology comes from a very active participation by the child who has then become a cured young adult. It's critical that they understand what their physical limitations might be, if any, and what the causes were. It makes it much easier later if you are honest with your child from the very beginning.
Another strange thing about us adults: we think that our role as parents is to protect our children from harm. That's a false notion. Protecting our children from harm is not our job as parents. Our job as parents is to hold our children's hands and walk them through the harm. It's our job to teach them how to face the harm. And if we can do this for our children with little things when they are young, then they can learn how to face bigger things as they get older. Then when they are adults, they will be more adequately prepared for adult life. If, on the other hand, when they ask us honest questions about the illness, we lie to them and say "It's nothing," they won't believe us anyway. Instead, they will internalize, they will push it all inside. If they learn when they are young to solve problems by pushing it all inside, then when they get to be adults, they will continue doing the same thing. That's not a very good way to cope with life. We owe it to our children not to try to protect them from inevitable harm but instead to teach them how to overcome that harm. And if we can be there by their side from the point of diagnosis as they move into long-term survival and as they come back to the clinic for follow-up visits, they will not only continue to love and trust us as parents, they will have learned some of the most valuable lessons we can teach them. That is true love of our children, very true love.
One of the errors we made in the medical treatment of children with cancer years ago was to think that if we cured the children of the cancer, we cured the child. We have come over the years to appreciate the fact that the child is not the cancer, the child is a child who happens to have cancer. The child has to be treated as a full human being. If the cancer causes stress in a child, the child has to learn how to handle that stress. The child has to be cured psychologically and as a human being as well as medically. And this is the thrust of pediatric medicine increasingly throughout the world: treating the child as a full human being, explaining what is happening, and inviting his active participation in the medical treatments. Sometimes we parents don't appreciate in our own children when they are young how truly strong and resilient children can be. One thing I have noted in my 30 years of listening to parents with a child with cancer is how often the parents will say: "I have learned patience from my child," or "I have learned hope and optimism," or "I have learned how to live the moment." Children respond positively and optimistically because they live in the present. We can learn a lot from our own children. If we protect them from knowledge of their illness, then they won't have the opportunity to teach us how to focus on the present with hope and optimism. Remember: children can be strong. Children can be resilient. We just have to give them the chance to become strong and resilient.
As parents, we often make the mistake of sacrificing too many of our own needs and the needs of the other family members for the sake of the sick child. We modify family life and center it too much on the child who is ill. That's a big mistake. We find that the families who do best are the families who are able to keep their lives as normal as possible, keep the childhood cancer in perspective, and keep everything else as much as possible the way it was before the diagnosis. It's important not to spoil the child and ruin a marriage at the same time. Your child with cancer is still a child. Send the child with cancer back to school as soon as medically possible. Discipline the child in the same way you would have disciplined the child if the child did not have cancer. If you say to your child with cancer, "You don't have to help me with the dishes tonight; you don't have to clean your room; you don't have to study," then you deceive yourself into thinking that you are being a kind and sensitive parent. Because when you do that, what the child says to himself is: "Mom is letting me get away with not doing my tasks. I must be sicker that they're telling me. Maybe I'm dying and they won't tell me." On the contrary, if you say to your child "You must continue with your studies; you must help me clean the house," then what the child hears in his heart is: "Mom is treating me the same as before; I must be alright; I'm going to be getting well."
If you have other children, remember that they too are still children. Because the mother and father find the burden heavy does not mean that they have to pass that heaviness on to the other children. It is especially tempting to have adolescent siblings share the parents' burden. Brothers and sisters have the same needs as other normal children; they should be allowed to live as a normal child or adolescent. If parents are not attentive, they will often inadvertedly allow the presence of childhood cancer in the family to turn brothers and sisters into overly serious young children or adolescents; we can so easily and unintentionally rob them of their childhood.
It is also critical for the health of the family that the mother and father keep their own personal and intimate life alive as husband and wife. I cannot tell you how many times fathers have come to me quietly after a family interview and said: "You know, when my son first got cancer, he wanted to sleep in bed with his mother; that was fine the first night or two, but after 6 or 7 months, it is getting very frustrating." The basic advice that the well adapted families give as a recommendation to the families with a new diagnosis is to keep the family as normal as it was before the diagnosis, as much as medically possible, especially the parents' own life. By keeping your own life normal and functional, you remain in the best position to help your child. If you live your family life this way, then the childhood cancer will be placed into proper perspective. And then, when the cure comes, the child can continue growing into his future. You cannot put your family on hold, freeze the family for two or more years, and then start again when the cancer is cured.
I'm sure there are some mothers and fathers in the audience today whose child has died. Even though we now have high cure rates, a percentage of children will eventually die of their disease. I can't imagine a worse pain than to spend the rest of your life living with a hole in your heart because your child has died. As I listen to parents who have lost their child in the various groups I have spoken with, one conclusion becomes increasingly clear: as these parents share their grief with other parents, their own grief diminishes. Don't keep that kind of grief inside; share with other parents who have gone through it. Many of the parents I have met who have started parents' groups in their own local areas have been parents whose children have died. It is their way of giving back. Giving back something in their children's memory makes some sense out of the pain that they and their children have suffered.
In the title of my presentation is the word "coping," how a parent deals with the difficult issues surrounding childhood cancer. As we move toward a conclusion, it is clear that keeping the disease secret from your child does not help the parents cope and does not help the child cope. As difficult as it is, you must learn within your own family to share the diagnosis with your child, to communicate with your child, to listen to your child. That does not mean burdening the child with your fears for the future. It means living in the present with the child and when sharing remembering that the child is still a child.
Over the years of listening to families, I have found that there are five characteristics of the best adapted families, present at the point of diagnosis, that helped the families function very well throughout the course of treatment and afterwards. One characteristic that well adapted families shared in common was that they had a basic philosophy of life, a philosophy that they brought into the diagnosis with them that helped them place the diagnosis in perspective. The families that did not do well were those who kept asking: "Why? Why did this happen to my child?" The answer to that question is that there is no answer; no one can tell you why your particular child got cancer. If you keep asking "why" you are going to distract yourself from the task of focusing on the treatment, and end up hurting yourself and hurting your child. The families who were able to somehow incorporate the diagnosis into an ongoing life-philosophy and thus free themselves to concentrate on the treatment phase adapted well.
The second characteristic that well adapted families share in common is a very strong social support system. That typically means husband and wife speaking to and listening to one another, and having a network of supportive family, friends, and other parents to talk to. Now keep in mind that there is a difference between men and women in the way they communicate and the way they wish to communicate. Not all men, but the majority of men prefer to talk just a little and then to go out somewhere and think about an issue rather than continue talking and talking. Not all women, but the majority of women prefer to talk to another person for an hour or two or more about the issue, covering all of the details over and over in depth. Both ways of communicating are good ways of coping. One is not better than the other. The difficulty comes when the wife tries to insist on using her approach with her husband, wanting him to talk more, or when the husband tells the wife she is talking too much and to leave him alone. Each must give the other space. The wife must be given the time and space by her husband to go out with her woman friends and talk; the husband must be given the time and space by his wife to go out alone and think things through, if that is what he prefers to do. In addition, the husband and wife should continue communicating with one another on the key issues regarding their child's cancer. It is important to have friends and social support systems outside the marriage, such as the kind of group that you are having here today and the kind of group Mr. Iwata has started. Remember one of the key points of our talk today: share with others; get your pain out, don't keep it in.
The third characteristic of well adapted families, not only during the course of the life of the child but even for those whose child died, was communicating as much as possible at the child's own level, listening to the child. We have never once had a single family after the death of a child who regretted saying too much; the regret comes from families who felt that they said too little. It's so important to talk to the children, in the manner we have described earlier.
The fourth characteristic of the well adapted families was making certain the brothers and sisters became part of the family discussions about the illness, listening to their problems and issues as well.
The fifth and final characteristic is that the well adapted families tried to function as normally as possible, within the medical limitations of the treatment. Remember what we said earlier, if you treat your child normally, he will not only pick up a sense that he is going to get well, but he will be better prepared for continuing his growth into adulthood.
These five characteristics help us predict which families are going to do well, and serve as guidelines for the help we can give all newly diagnosed families.
I want to leave a few minutes for discussion. I want to thank you for listening to my words. Keep in mind that what I have shared with you has very little to do with any level of expertise on my part. I am not an expert; all I have done is listen to families. I share with you what other mothers and fathers have said to me. You are the experts. It is you as parents who must decide the level of talking and listening that will take place in you own specific family. You must decide how much to share and how much not to share. It is, after all, your child. I'm just hoping that some of my words and some of the thoughts I have shared with you from other families can help you to talk a little more openly with your child, and can help you to look to other people not only for them to listen to you but for you to listen to them. What you will find is that by listening to others your own burden will have been lightened.
Thank you for your attention.
