Although it's a very hard chapter in a family's life, children can continue to grow and learn during this time. Dealing with cancer honestly and openly can teach them how to handle uncertainty for the rest of their lives. Making the most of the present is an important lesson for everyone
"This is the only childhood they will ever have, a crucial time of development. Choose to see your illness not as an obstacle but as a powerful platform from which your messages are amplified, helping your children understand and believe you and feel your love in a powerful way… When the facts are couched in love and hopefulness, you can guide your children toward a life-enhancing perception of reality.
It's never easy to talk with your family and friends about your cancer diagnosis, but when you have children it's even more difficult. I've worked with parents who have wanted to know a good way to approach the subject with their children.
Being a parent with cancer presents unique challenges. The demands of cancer and treatment make it difficult to care for young children. For young children, the thought of losing a parent is frightening, which makes many parents try to hide the truth about the diagnosis of cancer from their children.
Many parents think they can protect their child by not telling him or her about the cancer diagnosis. Parents often struggle with what to tell their children when they are diagnosed with cancer. How much they need to know and can handle depend on the child's age and maturity level.
I found that the best thing is to tell your children as soon as possible about your diagnosis. This has two benefits. The first is that you don't ruminate on it endlessly, which will save you enormous stress and secondly if you don't tell them they will pick up on your stress anyway and you can save them from thinking they have done something wrong or imagining something even worse. Remember that children may overhear conversations between adults and worry more if they feel that important news is held from them. As a parent you know your child better than anyone else. Just trust your intuition on how and when to tell them. This won't be easy and will need careful thought and planing.
If you are able, it is best to break the news to them yourself. If possible have your partner or a friend or grandparents present, or anyone else who may be involved with the childcare. If your child/ children hear the news from someone else, their imagination will run wild and sending them into a panic, or they may feel isolated or not important enough to be told firsthand.
Give children a small amount of information at a time, in words they can understand. Then give them time to take in the information and a chance to ask questions. Ask them if they have heard any words that they don't understand or find scary. Listen to their concerns. Help them express their feelings and reassure them of your love. It is often easier for younger children to show their feelings using activities, such as puppets or painting. Older children might prefer writing poetry or drawing.
Even though your children will be sad and upset when they learn about your cancer, do not pretend that everything is okay. Even very young children can sense when something is wrong. They will see that you don't feel well or aren't spending as much time with them as you used to. They may notice that you have a lot of visitors and phone calls or that you need to be away from home for treatment and doctor's visits.
Also encourage them to ask questions and be as honest as you can with the answers. Don't push them to talk if they don't want to. Let them know that you appreciate their feelings and that is alright for them to be upset while also encouraging them to support your efforts to think positively .
Infants to two year old ones
- Are most afraid of being separated from their parents and of medical procedures they cannot understand
- Need to be reassured that you will not abandon them at the hospital
- Although young children have no way of anticipating or understanding a procedure or trip to the hospital far in advance, they still should be told of upcoming events in simple, clear, and reassuring language
Two to seven year old ones
- Look for a specific cause for their cancer, such as something they did or thought
- Need to be reassured that they did not cause their cancer
- Need reassurance that you will not abandon them
- Are afraid of pain and of being hurt. Be honest with them about tests and procedures that may hurt, but also explain that the treatment is being done to help make them better. You may also explain that doctors have ways of making the pain go away.
- Understand cancer explained in simple terms
Seven to 12 year old ones
- Are less likely to believe that their cancer was caused by something they did
- Are more likely to understand that they will need to take medicine and undergo other treatments to get better
- Are afraid of pain and of being hurt; therefore, be honest with them about tests, treatments, and pain control
- Are capable of understanding a more detailed explanation of cancer.
- Are most likely to think about their cancer in terms of its symptoms and its effects on their daily activities, such as school, sports, and relationships with friends
- Are capable of understanding the relationship between their symptoms and cancer and the role of treatment
- Can understand a complex explanation of the cancer and may have many detailed questions. They may be interested in learning more about their diagnosis.
- May want to be involved in making decisions about their treatment
- Have a unique set of concerns surrounding their physical appearance and their ability to fit in with others. They may be concerned about losing their hair and gaining or losing a lot of weight. Talk honestly with them about the possibility of other side effects.
Children as young as 18 month old begin to think about and understand what is going on around them. It is important to be honest and tell your children that you are sick and the doctors are working to make you better. Telling them the truth is better than letting them imagine the worst. Give your children time to ask questions and express their feelings. And if they ask questions that you can't answer, let them know that you will find out the answers for them.
Adults can tell children what's going on in just a few sentences. "My doctor told me I am sick with cancer. The doctor is going to do what he/she can to make me better. I'll have to go to the doctor a lot to get a special kind of medicine so I might not be able to spend as much time with you. Sometimes the medicine might make me feel bad so I might not feel like playing much, but I'll still be here. I want you to know how much I love you." If the person with cancer does not feel comfortable telling a child about their cancer, a close relative or friend may be able to explain things to the child. This often depends on the relationship of the person with cancer to the child (for example aunt, grandparent, or parent).
When you talk with your children, use words and terms they can understand. For example, say "doctor" instead of "oncologist" or "medicine" instead of "chemotherapy." Tell your children how much you love them and suggest ways they can help with your care. Share books about cancer that are written for children. Your doctor, nurse, or social worker can suggest good ones for your child.
Let other adults in your children's lives know about your cancer. This includes teachers, neighbors, coaches, or other relatives who can spend extra time with them. These other adults may be able to take your children to their activities, as well as listen to their feelings and concerns. Your doctor or nurse can also help by talking with your children and answering their questions. Or you can ask them if there's a child-life specialist on staff. This is a person who can help children understand medical issues and also offer psychological and emotional support.
- Take in mind the age and maturity of your child. What do they relate to? What might work for one child, may not work for another. If they're at the age when they're reading books, you may want to get a book that describes what cancer is in very simple terms. If they're an older child or teen, they really just need you to be honest with them and give them facts, while at the same time reassuring them that you'll be there for them.
- Describe any physical changes that might occur during treatment, such as hair loss, fatigue, loss of appetite, etc.
- Let them know that you'll communicate openly with them as best you can about what's happening.
- Keep a daily routine if possible as children find much comfort in this.
- If you have more than one child, try to schedule one on one time with each of them to make sure to keep those special moments together. You'll find that it's during these moments that they might talk about their fears or ask questions they might have been too shy to ask in front of others.
The younger children are, the more likely they are to feel responsible for a parent’s or sibling's illness. Reassure them by saying that nothing they or anyone else did caused the cancer.
- Practice your explanation beforehand.
Your child will appreciate you remaining as calm as possible when you talk about cancer, especially if you are the one who is ill. Try to practice the conversation with your spouse or a friend, so that you can focus on your child's fears and put aside your own for the time being.
- Explain to them that cancer is not contagious.
Most children first experience sickness when they get a cold and are used to hearing adults say they caught someone else's strep throat or flu. Explain to them that cancer is not contagious. Reassure them that they are safe.
- Try to balance optimism with pessimism.
Telling your child that someone will be fine will only make him or her more confused and upset if it is not true. Offer a realistic but hopeful assessment of the situation and focus on the efforts that are directed toward recovery. For example, telling your child that "daddy is working hard with his doctors to get better" accurately sums up the situation without false promises.
- Encourage Your Children to Share Their Feelings and Questions
- Let children know they're not alone, and it's normal to have mixed emotions. Help them find ways to talk about their feelings. Young children may be able to show you how they're feeling by playing with dolls or drawing pictures. Other forms of art can help older children express themselves. Keep encouraging them to ask questions throughout caregiving. Keep in mind that young children may ask the same question over and over. This is normal, and you should calmly answer the question each time.
- Try to Ask Open-Ended Questions
For some families, talking about serious issues is very difficult. As challenging as it may be, not talking about it can be worse. Try to ask open-ended questions, instead of "yes" or "no" questions. Here are some ideas you might want to share with children of any age:
- "No matter what happens, you will always be taken care of."
- "Nothing you did caused the cancer. And there is nothing you can do to take it away either."
- "People may act differently around you because they're worried about you or worried about all of us."
- "You can ask me anything anytime."
- "Are you okay talking with me about this? Or would you rather talk to Mrs. Jones at school?"
- "It is okay to be upset, angry, scared, or sad about all this. You may feel lots of feelings throughout this time. You'll probably feel happy sometimes, too. It's okay to feel all those things."
Come up with new ways to connect. Make a point of tucking them in at bedtime, eating together, reading to them, talking on the phone or by email. Talk to them while you fold clothes or do the dishes. Have a set time when your children do homework while you do something else in the same room. Or take a walk together. Going to the grocery store can even be "together time." Just 5 minutes alone with each child without interruptions can make a world of difference.
It may be very hard to give your children the time and energy that you normally would. But despite what's going on, they still need to follow a normal routine as much as possible. They need to bathe, eat, play, and spend time with others. Are your children close to another adult, such as a teacher, coach, or some other person? If so, maybe you can ask them to help you with your kids while you handle your extra responsibilities.
You can also call on your own close friends to help out with some tasks, such as cooking dinner or taking the kids out for a pizza. These may be people your kids know well and are comfortable being with. You could ask others who don't know them as well to help with smaller tasks, such as carpooling or bringing meals over.
- Keep in touch with your children.
If you or another family member are in the hospital for any extended time, your children may think you don't want to be at home with them. Staying in touch will help reassure them that your illness has nothing to do with how much you love them. A daily phone call from the hospital, a note delivered by a relative who visited the patient, and other creative ways for staying in touch may reassure the child of the parent's love.
- Take your children's feelings seriously.
Children have many different reactions when they learn that a parent or sibling has cancer. These feelings can include anger, sadness, guilt, fear, confusion, and even frustration. All of these responses are normal. Let them know that it is okay for them to have lots of different feelings and that you have many of them, too.
- Prepare your children for the effects of treatment.
Cancer and cancer treatment can often affect someone’s appearance. Physical changes such as hair or weight loss can sometimes frighten children, or make them think a person has changed or is different. Explain this change to them beforehand so they are prepared. For example, you might say, "When mommy was sick in the hospital, she lost weight, and her hair fell out. But don't worry, it will grow back. She is still the same mommy on the inside."
If your children don't live with the person who has cancer, it's helpful to prepare them before they visit. The decision of whether or not to let them visit is up to you, your loved one, and perhaps other family members. However, children should have the choice about whether or not they want to go see the patient. If she is in a hospital or other facility, explain what the area and the room look like. Tell them who might be there and what they might see. Also explain gently if her physical condition or personality has changed.
For a younger child, you might say something like this:
- "Nana is very sick. When you see her, she will be in bed. She may not have a lot of energy to play with you or talk to you as much. She may look a little different too."
- "Mom may be sleeping while you're there. Or she may be awake but won't talk because she's resting. But she'll know and be happy that you're there. She loves you!"
- "Don't worry if you're visiting Uncle John and he says things that don't make sense. Sometimes the medicine he takes makes him do that. If it happens, we can tell his doctor about it to make sure he's okay."
Sometimes children don't want to visit, or can't for other reasons. In that case, there are other ways of showing they care. They can write a letter or do artwork. They can call the patient up or leave messages or songs on an answering machine. Encourage them to show love and support in any way they want.
Let children help but don't burden them with responsibility.
Let children know they can help their parent or family member feel better; it will make them feel less helpless if you let them run an errand, get a glass of water, or perform some other task that is appropriate for their age. However, be careful not to burden them with too much. The stress of having someone ill in the family can be severe. They will need lots of time to just play, relax, and be children. This need is especially true of adolescents, who are often struggling to maintain their own friendships and interests and may feel burdened if they are also asked to look after younger siblings.
Children deserve to be told the truth about a poor prognosis.
Hiding the truth from them leaves them unprepared for the loved one's death and can prolong the grief they will feel. And if you don't talk about the loved one's condition or don't tell the truth about it, you risk your children having difficulty trusting others when they grow up. By including children in the family crisis, you can guide your children toward healthy ways of coping with what is happening and help them prepare for their impending loss in healing ways.
Children of all ages may wonder about dying, life after death, and what happens to the body. It's important to answer all their questions. If not, they may imagine things that are worse than reality. Let them know that everything is being done to keep their loved one comfortable. Tell them that you will keep them updated. And provide opportunities for them to say goodbye.
In order to answer these difficult life questions, you need to know your own views on these subjects.
What are you hoping for? What do you think will happen? You can show them how to hope for the best while accepting the likely outcome (of death). If you're honest and up front, you are teaching them that death is a natural part of life. It shows them it's okay to talk about it. It can also be a time for them to be reminded that they won't be alone in their time of need. You will always be there for them. Counselors and oncology social workers can help you handle these questions, too. They may know of local or national programs that offer help to children in these situations. Or they may suggest books, videos, and Web sites that explore these topics.
Although this is both difficult and sad, it is important to be prepared to discuss death with your children.
You may want to consult a trained counselor or clergy first. One of the most important things to remember is to take your child's age into account when discussing death. Preschoolers, for instance, do not understand that death is final. In general, by the age of 10, children begin to understand that death is the end of life. Try to use very clear, specific terms. Avoid euphemisms such as, "sleeping forever" or "put to sleep," because children will think sleeping is like death, or be afraid that if they sleep, they might die. Remember, too, that it may take a long time for a child to fully understand, and to accept, any type of loss.
Children might have problems coping with cancer in a parent or another family member for many reasons. The person with cancer might be getting treatment at a hospital far away from home, or they may be recovering at home and be uncomfortable or look different. Children may also be asked to help out more or be on their best behavior, especially if people other than their parents are helping to care for them. They may question or even resent any loss of attention.
If friends or other family members want to help out, getting your children to school or to other activities when you can't is a great way to do so. This can help keep your children's routines as normal as possible.
Younger children may focus on death. Children often worry who will take care of them if something happens to their parent, and need to know about the plan. Older children and teens who are becoming more independent must deal with the changes taking place in their everyday life, and also the possibility of long-term separation or even the death of someone they love.
Although it is important to try and maintain a normal routine and lifestyle for children, they also need to be included as part of a family that is fighting cancer. Children may ask to see where treatment will be given and may ask questions about any changes they notice in the person.
Children can react to cancer in many different ways. For example, they may:
- Be confused, scared, or lonely
- Feel guilty and think that something they did or said caused your cancer.
- Feel angry when they are asked to be quiet or do more chores around the house.
- Miss the amount of attention they are used to getting.
- Regress and behave as they did when they were much younger.
- Get into trouble at school or at home.
- Be clingy and afraid to leave the house.
"Now that my Mom has cancer, everything is changed. I want to be with her, but I want to hang out with my friends, too. She needs me to help with my little brother, but what I really want to do is play football like I used to."
Teens may ask very tough questions, or questions for which you don't have answers. They may ask the "what if" questions and what cancer means for the future. As always, keep being honest with them. Even more important, listen to what they have to say. As with adults, sometimes it's the listening that counts, not the words you speak to them.
Teens are at a time in their lives when they are trying to break away and be independent from their parents. When a parent has cancer, breaking away can be hard for them to do. They may become angry, act out, or get into trouble.
Older children, especially teenagers, may feel uncomfortable sharing their feelings with you. They may try to ignore or avoid topics. Encourage them to talk with others. Also let them know that it's okay if they don't know what they're feeling right now. Many older children also find comfort in just spending time together, without talking about the situation. Hugs and letting your children know that you understand can help.
Teens may want to talk with other people in their lives. Friends can be a great source of support, especially those who also have serious illness in their family. Other family members, teachers, coaches, and spiritual leaders can also help. Encourage your teenage children to talk about their fears and feelings with people they trust and feel close to. Some towns even have support groups for teens whose parents have cancer. Also, ask your social worker about Internet resources for this group. Many have online chats and forums for support.
With teenagers, problems may be less obvious or more complicated than with younger children. Here are some things to keep in mind:
- Teens are supposed to be starting to be more independent from their families. Cancer makes this harder to do, leading some teens to act out or withdraw.
- Teens may give off the message of "leave me alone" when they still need and want your attention and support.
- Being a teen under normal circumstances is stressful. Some moods you see may have nothing to do with the family illness.
- Teens want to feel "normal." Make sure they have time for regular activities.
- Keep the communication lines open and involve your teens in decisions as much as possible. Make sure they have a safe place to talk about what is going on in their life. If it's hard for you to be on top of their activities and feelings right now, involve another responsible adult to be closely connected with your teen.
Try to get your teens to talk about their feelings. Tell them as much as they want to know about your cancer. Ask them for their opinions and, if possible, let them help you make decisions.
- Nothing your child did, thought, o r said caused you to get cancer.
- You can't catch cancer from another person. Cancer is not contagious.
- Just because you have cancer does not mean you will die from it. In fact many people with cancer recover from there illness.
- Your child is not alone. You are able to listen to their fears and concerns and will take part in their life's as much as you can.
- It's ok to be upset, angry or scared about your illness.
- Your child can't do anything to change the fact that you have cancer.
- Family members may act differently because they are worried about you.
- You will make sure that your children are taken care of, no matter what happens to you.
About what they can do
- They can help you by doing nice things like washing dishes or drawing you a picture.
- They should still go to school and take part in sports and other fun activities.
- They can talk to other adults such as teachers, family members, and religious leaders.
It is important to talk about cancer with your adult children, even if they get upset or worry about you. Include them when talking about your treatment. Let them know your thoughts and wishes. They should be prepared in case you don't recover from your cancer.
Even adult children worry that their parents will die. When they learn that you have cancer, adult children may realize how important you are to them. They may feel guilty if they haven't been close with you. They may feel bad if they cannot spend a lot of time with you because they live far away or have other duties. Some of these feelings may make it harder to talk to your adult children. If you have trouble talking with your adult children, ask your doctor or nurse to suggest a counselor you can all talk with.
Make the most of the time you have with your adult children. Talk about how much you mean to each other. Express all your feelings--not just love but also anxiety, sadness, and anger. Don't worry about saying the wrong thing. It's better to share your feelings rather than hide.them.
Your relationship with your adult children may change now that you have cancer. You may:
- Ask them to take on new duties, such as making health care decisions, paying bills, or taking care of the house.
- Ask them to explain some of the information you've received from your doctor or to go with you to doctor's visits so they can also hear what the doctors are telling you.
- Rely on them for emotional support. For instance, you may ask them to act as "go-betweens" with friends or other family members.
- Want them to spend a lot of time with you. This can be hard, especially if they have jobs or young families of their own.
- Find it hard to receive - rather than give - comfort and support from them.
- Feel awkward when they help with your physical care, such as feeding or bathing.
Points to remember when talking to your child about his or her cancer.
Practice what you are going to say beforehand and ask for advice from your child's doctor, nurse, social worker, or another parent who has been in a similar situation.
When you first talk with your child, consider asking another person to be with you. This might be another family member who can provide emotional support, or a doctor or nurse who can help describe cancer in detail.
A single conversation with your child probably won't be enough. Have frequent, brief conversations with your child to keep the lines of communication open.
Be open and honest and encourage your child to ask questions. Questions should be answered honestly, even if this means you don't know the answer and need to follow up later.
Share your feelings with your child and encourage them to share too. You are your child's most important source of information and support. If they think they can't share their feelings with you, they may think they can't share them with anyone and, therefore, may feel completely alone.
Explain the meaning of cancer-related words your child may encounter at the doctor's office or hospital. For example, an x-ray is "a picture of the inside of your body," chemotherapy is "special medicine to get rid of the cancer," a tumor is "a lump inside your body."
Expect changes in your children's behavior as they adjust. Younger children may become overly clingy or impulsive. Older children or teenagers, on the other hand, may become angry or distant and withdraw from family activities.