Since the time of your child's diagnosis, your lives have not been the same. The diagnosis of cancer brings changes to your life and the lives of the whole family. Every family is different. Each family has ways to cope with stressful experiences. Following is information to help you as you support your child and family.
Many families have told us about feeling fear, anger, depression and guilt. All these feelings are common human emotions. You are not alone. Talking with family and friends, a member of your child's health-care team, or another parent of a child who has cancer may be helpful. By sharing these feelings, you may find it easier to cope with the changes you are experiencing.
The time of diagnosis is often the most difficult. The fear of the unknown may be overwhelming. This experience may be your child's first hospitalization. Dealing with the stress of your child adapting to a new and sometimes frightening environment may be difficult. You may also have fears about treatment, your expenses, or how you will help your child to cope with cancer. Talking about these fears and getting them out in the open can be helpful. The health-care team is here to listen to your concerns and help you.
At times you may feel very angry at what is happening. Some families are angry with God or a cruel fate for singling them out. Some are mad at the health-care team for not finding an answer to what is happening with their child. You may even feel angry with your child for getting sick and turning your life upside down. Feeling angry is a normal reaction. Finding a safe outlet to let off steam may be helpful. For example, take a walk or talk with someone to let the tension out.
Parents often feel guilty for not knowing that their child was sick. Many parents wonder if they did something to cause their child to get cancer. Siblings may also feel guilty that they are healthy. Young children often experience “magical thinking,” and may believe that they caused the illness (We had a fight and I wished he would die! ). Everyone in the family needs to be assured that they did not cause the cancer, nor could they have done anything to prevent it.
People use depression to describe a range of emotions and behaviors. Feeling “blue” or sad is a normal reaction to the diagnosis of cancer and the demands of treatment. The diagnosis may also require changes in family routine and bring feelings of social isolation. These changes and losses may produce grief reactions. You may notice symptoms of grief, such as crying spells, decreased appetite or compulsive eating, lack of interest in things you usually care about, decreased energy, lack of concentration, poor problem-solving, and physical symptoms such as tightness in the chest or headaches.
With the support of family, friends and your child's health-care team, most parents are able to work through these emotions and use coping skills to meet care demands. Individual or family counseling allows parents a way to discover strengths they may not have known they had.
Sometimes parents find that their emotions are so overwhelming that they feel that they cannot cope with the demands being placed on them. When other life stressors existed prior to the diagnosis -- such as a death of a close family member or friend, recent job loss or move, marital problems or divorce, or emotional problems or substance abuse -- the situation may be more difficult. It may help to discuss your feelings with a trusted member of the health-care team. Counseling and medications are available and may be needed as well.
- Make a special effort to find a private time to talk with your spouse or a close friend. Try to talk about things other than your sick child.
- Try not to talk about your child in his or her presence, unless he or she is included in the conversation.
- Find ways to reduce stress. You know what would work best for you. Some people exercise, while others enjoy reading or shopping.
- Try to take turns with your spouse or another support person when staying with your child in the hospital or coming for clinic visits. Both parents can be involved with the child's treatment. Sharing responsibilities also reduces the gap that may grow between parents when one is more involved in care than the other.
- Ask a member of the health-care team for help and support.
- Talk to other parents of children with cancer.
- Attend a support group.
A chronic illness can quickly turn a family's life upside down. Parents often become exhausted trying to cope with the needs of the child and the rest of the family. Many parents try to continue to work at their jobs and keep the home routine as normal as possible. Many couples feel strain on their relationships. Parents often say that they do not have time for each other. They may feel angry and frustrated with what has happened to their child. Three things may help prevent the breakdown of a marriage: respecting coping styles, maintaining communication, and accepting changing roles.
Respecting coping styles
Each person responds differently to stress. Some parents may withdraw; others may cry or get angry, while others may cope by gathering information. Parents need to learn and respect the different ways each has in coping with the child's illness. Try to understand where your partner is in accepting what is happening.
The key to any successful relationship is communication. The need to talk about feelings and fears, express appreciation and share information is even greater during times of stress. Silence can make you feel separated from your partner. By sharing feelings and information you can stay connected and be better able to make decisions.
Accepting changing roles
The demands of illness and treatment can change the roles of family members. For example, the father may have been the primary decision-maker in the family, but now the mother is making the decisions with the health-care team because the husband is at work. Or, one spouse may have had primary responsibility for taking care of the home, but now spends most of every day with the child in the hospital, requiring the other spouse to help out more in the home. The change in roles can cause stress within a marriage or family. Some temporary role changes may be necessary to support the ill child. If the changes improve how parents or family members work together, some role changes may become permanent.
Parents working together
David Adams and Eleanor Deveau, in their book, "Coping with Childhood Cancer," list six ways that parents can work together when they have a child with cancer:
- Give each other sympathy and understanding instead of blame and criticism.
- Make the sick child a priority; both parents come together to learn about the diagnosis and treatment.
- Recognize that parents must continue to share in caring and loving for their other children.
- Share their own feelings of anger, sadness, sorrow and hope with each other.
- Accept the help of family, friends, and neighbors.
- Be loyal to their partner in the face of criticism or blame from relatives or others.
Suggestions for divorced parents
While divorce is difficult for most families, it may be harder when a child is diagnosed with cancer. In families where parenting issues are unresolved, children may use the diagnosis and treatment to “bring together” divorced parents. In some cases, the child may play one parent against the other in an attempt to gain some control. Work together and do not allow the stress of divorce to affect your child's care. Though the marriage has ended, the responsibility of parenting continues. Communication helps both parents get the best care for their child.
Some suggestions to help avoid problems include:
- Talk with a member of the health-care team if your child is having behavioral problems.
- Place a copy of divorce decrees, custody and visitation rights in your child's medical record.
- Meet together with the health-care team to avoid confusion about the plan of care.
- Share notes or a tape recording of information if one parent is not present for a meeting.
- Ask for two copies of all teaching materials so both parents can have the same information.
Brothers and sisters of a child with cancer may have many different feelings and responses. Often they have needs similar to their sick brother or sister. They may feel upset, scared, and unsure of what the future holds. Siblings may fear the word "cancer" and worry about death. Regardless of age, they will sense a change in their family life.
While siblings may feel sad and worried about their sick brother or sister, they may also feel some resentment or anger that mom and dad are spending so much time with or talking about the sick child. When friends and family send gifts and money, siblings, especially young ones, may feel jealous. Siblings may also feel sad and cry easily. Often siblings have problems of their own, such as depression, trouble sleeping, physical complaints or problems in school.
How to help siblings
The following suggestions may be useful in helping your other children cope with their brother's or sister's illness:
- Try to spend time alone with your other children, doing things that are of interest to them.
- Let your other children know they are still loved and important to you.
- Talk with your other children about their ill sibling's diagnosis and treatment. What you tell them will depend on their ages and ability to understand. Assure them that cancer is not contagious and they are not responsible for their brother or sister getting cancer.
- Take your other children with you to the hospital to help them feel involved in the care and treatments of your sick child. Taking them to the hospital or clinic may help to decrease their fears and help to keep a feeling of closeness with their brother or sister.
- Ask a loving friend or relative to stay in your home, rather than send your children elsewhere.
- Allow your children to help with chores at home to help them feel needed -- and to help you, too.
- Talk with your children's teachers. Teachers can be supportive to your children and let you know about any school-related problems.
- Ask for help from a member of the health-care team: child life specialist, social worker, psychologist or child psychiatrist.
Also see GREAT information fact sheet: How patients and siblings react to hospital care
Grandparents have a variety of responses when they hear that their grandchild has cancer. Like you, they may feel shock and disbelief. Grandparents may feel guilty for living a long life. They may also feel they are responsible; thinking they in some way passed cancer through the family. Grandparents may also feel sadness, not just for their grandchild, but for their son or daughter as well.
Grandparents can be a great help to you and your family. If they are still in good health and can be with you, they can relieve you in the hospital or help you at home. A grandparent may also give your other children the attention, comfort, and love that they need. Grandparents can also serve as contact persons. They can give information to other family members, so you don't have to spend as much time on the phone or emailing. Including grandparents in meetings with the health-care team can help them to understand the plan of care for their grandchild.
From the moment a child is diagnosed with cancer, the normal family routine is disrupted. The child becomes the center of attention of family members and friends. Often, the child receives many gifts. Although the child may feel sick, gifts and attention are still fun. Children can get use to being “special” and want the special treatment to continue.
Discipline problems are most common when the special attention stops and normal activities resume. The illness itself can also interfere with discipline. Children are likely to act more immature and more dependent when they feel sick. Pain and the side effects of treatment can make any child irritable. Many medicines, like steroids, can also cause irritability. These behavior changes can make it difficult to know what is reasonable to expect of your child.
Many parents feel helpless and guilty when they see their child suffer. You may feel the need to make up for the suffering by giving special privileges. These feelings are normal. However, becoming too lenient is a problem, too. Children expect and need adults to give them structure. Rules and limits provide security. If a parent does not expect the child to behave or follow the same rules that were in place before the illness, the child may think the illness is worse than he or she has been told. The child may think that the condition is hopeless.
Keep in mind the following guidelines when deciding on how you can provide limits for your child:
- Set clear, consistent and age-appropriate limits.
- Adjust your expectations to your child's current condition. If your child is not feeling well, “please” and “thank you” may not be reasonable with every request.
- Use praise and attention to reward good behavior.
- Use alternatives to spanking. Try using a “time out” approach or taking away privileges.
Information adapted from the "Family Handbook for Children with Cancer", CureSearch/Children's Oncology Group. Last updated 5/2007.