Call us anytime. (866) 629-1551 FOR CAREGIVERS Talking to kids about cancer Tips for caregivers Intimacy during cancer care Talking to kids about cancer Why should you talk with your children about cancer? Cancer impacts the entire family. Parents may feel they are protecting their children by hiding a cancer diagnosis. But cancer is not something you can easily hide, nor should you. Keeping such a secret can cause additional strain on you and your family at a time when you need to focus on healing. Talking with your children about your illness may be one of the most difficult things you've ever had to do. However, avoiding the subject does not prevent children from learning about it another way. Although they may not show it, children of any age can usually sense when something is wrong. Like adults, children can pick up on tension and stress and are likely to notice a change in the family routine. If they are not told the truth about a parent’s illness, children may become scared and anxious. They may use their imagination to explain the changes around them. Children are also likely to eavesdrop on conversations or receive misleading information from sources like television or the internet. Without the correct information, children may feel as if they are to blame or they are being punished. Talking with your children allows you to control the presentation of information so you can create an accurate picture for them. Your child will learn that you are there for support and they can count on you to be honest with them. Most of all, they will learn about how families can pull together during difficult times and overcome challenges. How may your child react to the news? Each child responds in his or her own way to the news of a parent’s cancer diagnosis. Children may experience feelings of disbelief, anger, uncertainty, guilt, fear, and/or worry. You know your child better than anyone else. You can expect your child to react in ways typical his or her age, personality and past behavior. Upon hearing the news, your child may: Worry that cancer is contagious or that they can “catch” it Feel guilty or wonder if they did something to cause the cancer Become overly clingy or attention-seeking Feel sorry for themselves or resentful of the situation Withdraw from you to protect themselves Act out by behaving badly, whining or complaining Experience loss of appetite, stomach aches, headaches or difficulty sleeping Exhibit changes in school performance How your child reacts to your cancer diagnosis will depend on how you and others handle the situation. The way you present the information, including your words and emotions, will play an important part in how your child copes with the news. Your child's age and stage of development Your child’s age, coping skills, constitution and level of maturity are important factors in how you approach the situation. Children of any age may regress or act younger when under stress. Their behaviors may become exaggerated for a period of time. For example, a recently toilet-trained child may start having accidents. Children who have problems paying attention in school may have even more difficulty concentrating than before. Depending on their age group, the following are ways your children may handle your cancer diagnosis: Small children will not understand the concept of cancer. They tend to focus on the cancer side effects they can see, such as hair loss. Young children also tend to believe they are the center of the world. It is common for them to assume they are to blame for the cancer because of something they thought, said or did. They also fear separation and being left alone. Since small children are often unable to express how they are feeling in words, you can get an idea about what is going on by watching their behavior, including changes in their play. School-aged children will understand more and have a basic knowledge of the human body. They will need clear and simple explanations since they still don’t have the focus of adults. They may be disturbed by a change in the daily routine, and they may look for ways to help you. Children of this age may also be reluctant to discuss their feelings because they are afraid of adding to a hardship. Upon hearing the news, they may go off and play and react later. Teenagers have likely heard about cancer and may want to know more detailed information about the disease. They may also be afraid to upset you by asking questions or bringing up your diagnosis. Teenagers present special challenges because of their need for independence and space. They may feel guilty about wanting to get away when they feel they should be at home. In addition, their emotions are often complicated. They may feel it is childish to show their feelings at a time when they want to appear grown up. Breaking the news Talking with children about cancer can be difficult and upsetting for both of you. It can be even more challenging when you are dealing with your own feelings of fear and uncertainty. You may feel unsure about what to tell your children, when to share this information and how to tell them. Understanding how to talk with your children about cancer may help you move forward as a family as you all begin this journey together. Tips for talking with children about cancer Think before you talk. It’s important to think about what you're going to say and how you will say it ahead of time. The more calm and composed you are, the less scared they will be. It may help to write down your most important points so you can focus on your child. It may also help to review what you are going to say with another adult or consult books or search the internet with suggestions for talking to children about cancer. Pick your time carefully. Ideally, talk to your children as soon as possible after you are diagnosed. Plan the conversation with plenty of time to avoid unnecessary interruptions. Try not to begin the discussion when you are feeling tired or discouraged. Likewise, wait until your children are well rested. Don't be surprised if your conversation is very brief or if you don’t notice an immediate reaction from your child. Choose who will talk. As a parent, it is usually best for you to tell your children the news. This is a very difficult thing to do, and there is no easy way of saying it. It is okay to get mildly upset or cry. Seeing you cry gives your children permission to cry, too. If you don't think you are able to break the news to your children, you may consider asking your spouse or close family member to lead the conversation. Find a good place. Try to create an environment in which your children feel safe and able to ask questions. There may be particular places where your children may be more likely to discuss things with you. While bedtime may usually be a good time to talk, you may not want to start a difficult conversation right before your child needs to go to sleep. Wherever you choose to talk, make sure you spend enough time with your children so they feel supported. Keep it simple. Keep the discussion simple and straightforward and use words your children can understand. Use basic information to explain your illness and answer only what they ask. Explain how their life and the daily routine will be affected. Give them a small amount of information at a time. Ask them if they have heard any words that they don't understand. Remember there is no perfect way to have this conversation, so do your best. Remember their age. What you say and how you say it depends on your child's age and maturity level. Many age-appropriate videos and books about cancer are available for you to review with your children, or they can read themselves. Try not to talk beyond their attention span or level of understanding. With younger children, it may help to use role-play, picture books, dolls or stuffed animals. Older children and teenagers may want more detailed information about the disease and its treatment. Be prepared to answer difficult questions. Try to anticipate the questions your children will ask and how you will respond to them. Remember that you won't have all the answers. It's okay to say, "I don't know, but I'll try to find the answer for both of us." Your children may ask, "Are you going to die?" This is a very difficult question. Give your children the most hopeful, optimistic outlook you can justify. Provide assurance that you will always try to be honest with them about what's going on. Allow time for your child to absorb the news. Children, especially young children, can only handle bits of information at a time. As they ask for more detail, you can provide it, but you don't have to discuss everything at once. Listen closely and answer only the questions your children ask. Your children may not have much to say during your first conversation, so try to be patient with them. Be as open and honest as possible. Answer your children's questions as honestly as possible and, whenever possible, share positive information with them. You can admit that this is an upsetting or scary time, but let them know that you are doing everything you can to get well. The key is to reinforce that you will all get through this together, as a family. Explain the changes they can expect. Cancer and its treatment can make you feel tired and sick. You may lose weight or lose your hair. Explain this to your children ahead of time so they understand changes in your appearance or behavior. You may also need to have someone fill in for you during treatment. When you explain these changes, it sends a message to your children that you are still in charge and, most importantly, that they will be taken care of. Encourage your children to express their feelings. Your children may not express how they feel because they want to appear strong for you. Have them draw pictures, write poetry or use puppets to show their feelings. Also, don't be afraid to express your own feelings and let your children know that their feelings are normal. If they are finding it hard to talk to you, encourage them to talk to someone close, such as a friend or relative. Reassure your children. Children depend on their parents for their basic physical and emotional needs. Your diagnosis may challenge your children’s sense of security. Reassure them that your doctors are doing everything they can to make you well again. Let your children know that they will always be cared for and loved. Also, remind them that cancer is not contagious and they did not do anything to cause it. Caring for children during cancer treatment The way you parent may change during cancer treatment, not because you want to but because there will likely be days when you are not physically capable of doing everything you have always done in the past. You also may have days that are emotionally challenging as well. It’s a good idea to be prepared for what to expect. Tips for caring for children during cancer treatment Maintain as normal a routine as possible. Children thrive on routine—it helps them feel safe. You may not be able to spend as much time with your children because of doctors’ appointments and your treatment schedule. Although you can try to keep as many things the same as possible, you may need to create a new routine that fits this cancer journey. Let your children participate in your care. Remember your children are now part of a family that is fighting cancer. To help them feel included, give them age-appropriate tasks, such as bringing you a book to read, helping you select a wig, etc. However, don’t rely on them to take on too many added responsibilities. Also, try not to be offended if they don't want to help. Maintain discipline. Disciplining your children can be especially difficult during this time. You may feel guilty about it, or you may not have energy for it. Yet, a breakdown in discipline can send signals to your children that something is very wrong. Try to set consistent, familiar rules and reward good behavior. Your children may behave badly because they are upset or are seeking attention. Let them know that you love and accept them, but not their misbehavior. Provide a sense of control. Cancer can turn things upside down. Try to give your children choices, such as what they would like to wear to school, to help them feel more in control of their lives. Hold family meetings on a regular basis to update your children on how things are going. Let friends and family take over some household duties to maintain stability in the daily routine. Have fun together. Make an effort to have fun with your children. Activities can also help children use up excess energy and relieve anxiety. On days when you don’t have a lot of energy, try reading, watching TV/movies, or doing artwork together. Share poems and songs that have special meaning to you both. Pay attention to warning signs. Children may become withdrawn or misbehave if they are upset. Watch for disturbances in their behavior or attitude and consider telling their teachers so they may also be alert to changes. Remember, you are the expert on your children. Trust your own sense of how to support them during this time. Seek counseling/support. Let your children know they don't have to face your illness alone. Arrange for them to speak with a counselor individually or go to family counseling. In addition, a support group for children whose parent has cancer can provide a safe place to share their feelings. A hospital social worker, nurse or psychologist may be able to recommend resources as well. Find your way. There is no right or wrong way to handle the situation. Each family finds its own way to adjust. The actual words you use are not as important as letting your children know that you are there for them. You may even find that you and your children develop a closer connection as you talk about your illness together. NOTE: This information is not intended nor implied to be a substitute for professional medical advice. 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