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When you are told your cancer is not curable, you have probably already been dealing with cancer and its effects on your family for many months or even years. It can be very hard for you and your family to think about all the things that go along with life ending. Because of this painful and personal topic, the following information may be quite difficult to read at times.
As hard as it might be to face this information about what children need during a terminal illness, we hope your burden will be eased in some way by taking positive steps to help them. All parents want to protect their children from the pain that life can bring. While it is not possible to control the reality of having cancer, it is possible to make a real difference in how your children handle the experience and go on with their lives.
Will This Experience Affect My Child’s Happiness and Ability to Enjoy Life in the Future?
Patients with incurable cancer worry that this experience will destroy their children’s ability to enjoy life in the future. Health care experts who have worked with many families dealing with cancer say that this is rarely the case and that in fact, children can and do recover from the impact of a parent’s illness and their loss through death. This may be hard to believe, but most children, with the help of their parents and others, learn to be happy again and enjoy their lives. It is your potential ability to mold how they feel about your illness and are able to move beyond it that may give you strength in the months to come.
Remember that your experience with cancer is only one part of your child’s life. Unless your children are very young, there have probably been many years in which you were not sick. If your children are very young, the memories of your illness will recede into the background. Having a parent with cancer is only one part of your child’s development and does not by itself, produce lasting damage to them as adults. The essence of parenting is to love your children and help them feel secure. You can continue to do this in spite of the stresses that cancer may cause you and your family.
How Will I Know My Illness Is “Terminal”?
People usually understand "terminal" illness to mean the cancer is no longer considered curable and the person is dying. However, the fact that an illness is no longer curable does not mean it is not treatable. Cancer can be treated for long periods of time, but the goal is to manage the symptoms of progressive or advanced disease without expecting to get rid of it entirely. Parents often wonder when their children need to be prepared for death. Children, especially young ones, have difficulty waiting long periods of time for a parent’s death. This is a very tough reality for anyone, especially for children.
It is important to manage your own emotions as much as possible before you talk to your children. Of course you cannot expect to be in total control of every feeling you have, but you also need to deal with your own feelings first. Once you have spent some time wrestling with your emotions of fear, anger, and sadness, you may be better able to assist with the needs of those who depend on you.
If you are having trouble sorting through all of the emotions that surface at this time, consider talking with an expert who has worked with other patients facing similar problems. While you may solve some of these difficult issues on your own, you may lose valuable time depending only on yourself. Oncology social workers, nurses, psychologists and other cancer care counselors have experience and educational backgrounds that have prepared them to work with families who have been where you are. Let yourself benefit from their experience and what they have learned about coping with the problems of a serious illness.
One sign that a disease is considered terminal is when the treatment is no longer expected to cure the disease. Your doctor may tell you that further curative treatment is not possible and that the medical treatment is focused on controlling your symptoms. Your body may give you signals of continued weight loss, fatigue, increased pain, and less pleasure. These problems are treated to keep you as comfortable as possible rather than to cure the disease.
Some people feel they are considered terminal when active curative treatment is no longer possible, while others will want curative treatment until they are at the very end of their life. Regardless of the information offered by your medical team or even the signs of physical decline in your body, it is hard to think of yourself as "dying" when you may have many months of life ahead. In this way, the process of “dying” is how you define it. People usually try to be realistic about what the future holds while at the same time they continue to focus on living one day at a time.
You and your family will benefit if you stay involved with life and do the things you enjoy as long as you can. If your health care team has not talked to you about services to make this period more manageable, tell them you need more information so you can make plans for yourself and your family.
You may want to explore hospice services in your community. Hospice programs involve a team of people and services. This team may come into your home in the months before death to help you and your family manage the problems or issues related to a terminal illness. The team usually includes doctors, nurses, home health aides, social workers or other types of counselors, and a member of the clergy. Hospice services can also be delivered wherever the patient is residing, be it the hospital, a nursing home, or an inpatient hospice facility. Hospice services are covered by Medicare and at least in part my most insurance plans.
Why Should I Tell My Children I Am Dying?
Children should be told of a parent’s terminal illness so they can prepare themselves for what will happen next. The pain of losing you will likely be worse if they are given no preparation. Children rely on their parents to bring order and security into their lives. Although children may not be able to say this, parents help them understand the world around them and their place in it. That’s what being a parent is all about.
Think about how you prepared your child for his or her first day in school. You were probably very aware of the reaction of being separated from you, the anxiety about meeting new children and the teacher, and just not knowing what to expect. You probably talked about all of the new things to learn, the fun in making new friends, and how going to school is a normal part of growing up. While your child might have had trouble knowing exactly what this would really mean, he or she depended on you to help deal with this new phase in life. The first day away from familiar routines was made a little less scary because of the preparation given. Children look to their parents to interpret their world and help them deal with the uncertainty of the future.
Obviously, preparing a child for the death of a parent is a much more important and traumatic event than the first day of school. Not preparing a child for a parent’s death may send the message that he or she is not an important part of the family. It may also give the impression that death is so terrible that he or she will not be able to cope with it and that it even may be their fault that this is happening. No parent intends to suggest this, but because children are often unable to explain what they think and how they feel, not preparing them leaves them alone to make sense out of this critical event in their lives.
Why Would a Child Feel Responsible for the Death of a Parent?
Children often feel responsible for whatever happens in their young lives. This is called "magical thinking" and while it makes no rational sense, it is in fact an interesting difference between how adults and children think. Children are egocentric, which means they see themselves as the center of the world. Anyone who has spent time with a child knows this! They are often unable to see beyond themselves. As children grow up they understand that they are not really the center of the universe and all kinds of things influence why events occur. It is part of human nature to look for the "why" of what happens in our lives and children have a harder time than adults trying to find answers to these questions.
Sometimes children are unable to ask why things happen. They may not even be aware that they blame themselves for their parent’s cancer and that the parent might not survive. Even if they do wonder about this, it is very scary to ask "Did I make Mommy sick?" For this reason, we have suggested that parents bring up the subject themselves, and say something like "...and the doctors have told us it is nobody’s fault that Mom (or Dad) has cancer." That way, if the child is so worried that they can’t bring themselves to ask this question, it gets addressed and does not cause the child too much anxiety.
Think about some of the things you have probably heard your children say when they’ve been upset or angry, like "I hate you," "I wish you were dead," "I wish I was dead," "I’m going to run away," "I wish I had a different Mommy," "I wish you were like Tommy’s daddy – he got a new bike," "I don’t love you anymore!" and so forth. Often in their anger they do not mean what they say, but these statements express their emotions at the moment. Once spoken, these words are usually quickly forgotten when they calm down. The younger a child is, the more trouble they have separating what’s going on in their minds and hearts from what is actually going on in their day-to-day lives. For this reason, parents need to think ahead about such thoughts, as irrational as they are, and address them up front. If you wait for your child to ask you if something they said or did is about to cause something awful to happen, it may never come up. It’s just too scary for them to ask, "Did that day I told you I hated you make you get cancer?" or worse yet, "...make you leave me?"
It is very painful to think that what is happening to you will upset your children. We always wish that we could spare the people we love from pain, but that is not always possible. Life can seem so unfair and it seems especially wrong that we may not be there to see our children safely into adulthood. The best we can do is give them whatever tools they will need to succeed and be happy and a firm foundation that will see them through life’s trials and troubles. It may seem impossible that your children will one day be OK. It is certainly not easy, but we know from experience and research that children can and do cope with the loss of significant relationships if they are loved and given enough help by those close to them.
When Should Children Be Told that a Parent Might Die?
Many factors influence when a child needs to be told that his parent is probably going to die. The first depends on what a child has been told over time about the situation. Hopefully, the child has been given truthful information from the beginning about the nature of the parent’s cancer and how it affects the family. Children need to be told the truth in manageable, often small, simple doses and given a chance to adjust to what they can understand while still going about their everyday lives. If you have now reached the point that you know you are going to die and your doctor has confirmed this, your children need to be gently told.
A good way to begin this discussion might be to ask your children what they understand about your illness and how they think things are going. Your children might already have an idea that things are worse than before. Children react to what they experience and see. If your condition has declined, you are probably less able to fully participate in their normal activities, are more tired, depressed, or anxious so they might sense that the treatment is no longer working. However, given the advances in managing the side effects of treatment, some patients don’t often look as if they are dying. Children are also very concrete. One little boy, when asked if he worried about his dad dying, said that he knew this wouldn’t happen because his dad’s feeding tube was helping him eat. So don’t assume that you know what is going on in your child’s mind. You must ask.
Because a child’s concept of time is so different from an adult's, your children may not cope well with many months of anxiety waiting for a parent to die. So talk to them gradually and only when you are certain that this will happen in the near future, as in days or weeks. Wait until you have the emotional energy to address the issue. If this seems impossible for you, talk to your spouse or other family members about who can best handle these discussions. Ideally your spouse, or someone your children are close to and trust should have these discussions. If you cannot count on family members to help you with this, talk to your heath care team and ask for their help. Cancer care professionals have experience with families in all kinds of situations and are usually very willing to help.
How Can I Explain Death to Young Children?
The first thing children need to understand is there has been a change in their parent’s response to treatment. Children who have been told that the treatments are supposed to control or get rid of the cancer need to be introduced to the idea that this is no longer happening. Parents should try to understand how their children think things are going. Do they have any idea that Mom or Dad seem to be getting sicker? Often children sense that the situation is becoming more serious just by the way their parent is acting, by the way they look, or by how much or little they are able to take part in their child’s activities. This usually is a gradual process in which Dad is no longer able to play ball with them, relatives or friends are helping out more, or the sick parent is no longer able to take part in parent-child activities at school. Family life seems to revolve around trips to the hospital and there is less time for the family to enjoy their usual routine. So children should be asked "How do you think Mom (or Dad) is doing?" Find out what the child thinks these changes in their parent and in their family life mean.
Parents should explain that the treatment is no longer working. The doctors have said that they have tried their best medicine or treatment and that the cancer seems to be growing instead of getting smaller. During a talk like this, ask children to tell you what they think this means. Have they worried that their parent won’t make it? What do they think of all of the changes that have gone on in the family lately? Most children sense that things are worse, but they are often too scared to talk about what they fear the most.
You can tell your children that what everyone hoped for is no longer possible – the cancer is still there – and that means that the parent will probably not survive. Sometimes people die from cancer in spite of the treatment and it looks like this is going to happen. Depending on their age and many other factors, children may not be able to really grasp this explanation, and their reaction is often one of disbelief at first. This is a normal reaction shared by the patient is who is thinking "How can this be happening to me?" A child’s response may be an angry one, and sometimes he or she is angry with the parent who is sick. This is normal.
All children depend on their parents to provide security and love and to make sense of life. Children have fears about being abandoned by the person they have depended on the most to keep them safe. Since young children are rarely able to talk about these feelings, it is up to the person telling them this news to build in changes the family has thought about and the plans that have been made to keep the child’s world as safe as possible. The immediate and most pressing issue is "Who will take care of me?" Parents need to tell their children what arrangements have been made to provide the care and security the sick parent can no longer provide.
Since children are so concrete (their understanding of something is based on what they can directly experience), death should be explained in those terms. Death means that we will no longer see the person we love. Death means the person will no longer be physically present in our lives. They will no longer be with us as they were before but we will still have memories of them. We will never see them again except in our hearts and minds. Young children will probably not be able to understand the full meaning of this the first time. It may be important to repeat this discussion many times in order for them to fully understand. Because children do not want to believe what is being said to them, they may ask the same questions over and over again as if this conversation had never happened. They keep asking the same questions, hoping that the answer may be different the next time, hoping that somehow what they are being told is not true. While this is painful for the adult, eventually the child will be able to accept the reality. This process is how the child gradually integrates the painful truth.
Are There Differences in Issues Depending on Whether the Sick Parent Is a Mother or Father?
The answer to this is yes. Mothers and fathers have different roles in the family. Mothers are usually intimately involved in the life of babies and young children and give most of the physical care. Fathers may be less involved in the day-to-day physical care of young children, but today such roles are much less rigidly defined. Both parents may share in taking care of the physical needs of a child, especially in a two-parent household where both parents work. If this is the case, it may be easier to plan for how the absence of one parent will affect the child. No matter the parent’s role, the child will feel an acute loss of that parent.
Depending on the child’s age, other people can take over the everyday care needs of children. With babies or very young children, this substitution may seem to have very little impact as long as the child’s needs for physical nurturing are met. In general, the more stable and permanent the substitute relationship is, the better it will probably be for the child. For instance, many family members may pitch in to help the remaining parent and children. Once the crisis of the parent’s death is less immediate, it is best to try to bring as much permanence to the child’s life as possible by using the same caretakers, or the same day care situation to bring some stability back into the child’s life.
Other issues can be somewhat more complex. The sex of the parent who has died influences the remaining child or children’s development. Questions such as "Is it harder for girls to lose their mothers or boys to lose their father?" are difficult to answer. So much depends on the quality of the substitute parenting, the age of the child when the parent dies, the child’s relationship with the remaining parent, the child’s personality, stage of development, and their general coping skills.
Children form their self-concepts by identifying with the parent of the same sex. They also develop successful love relationships by identifying with the parent of the opposite sex. So children may look to other relationships in the family for substitute parents with whom to identify. A favorite aunt or uncle may be able to step in and be role models. Community agencies like Big Brothers or Big Sisters may also provide relationships for children who have lost a parent.
What If I Am a Single Parent and Have a Terminal Illness?
As any single parent can tell you, there are unique challenges and joys in being a single parent. As one single parent said, “You have all the joys and all of the heartache.” Having cancer as a single parent is challenging, but to realize that you are terminally ill with cancer as a single parent brings a new definition to the word “heartache.”
For single parents, the primary issue is determining the appropriate caregiver for your child or children. You cannot start this process too early in the illness, and hopefully have already begun discussions with friends and family about the best option for your dependent children. For many, family may not be not an option. You may need a network of people who will help care for your child or children after you are gone. Think carefully about the needs of your children. Your children will need a home. But they will also need emotional support, adults who can just hang out with them, people who can and will share stories about you and who you were as a person. Think outside of the box when you think about who you want to surround your children with, who will provide the most love and care. Think about friends, both male and female, that you want to stay connected to your children. Write them letters and talk with them ahead of time about what your expectations are of how you would like them to stay involved with your children. People who love you will want to be with your children and support them.
Make your wishes known in your will, so there is legal clarity about these issues. Then, depending on your child’s age and beginning at school-age, discuss your wishes with your child. (For children who are younger than school-age, you and the new family caregiver can talk together with them and prepare them for their new home as the time approaches.) Prepare them for what will happen once you are gone. Explain to them what you have decided would be best for them and why. Your children will feel safe knowing that you have made the best plan you could ahead of time. You faced this issue head-on, not because you wanted to leave—you would do anything to stay if you could—but because you love them so much, you wanted to make sure they are in the best place possible. Cry together about not being able to stay, but assure them that they will be well cared for and you know they have the strength to face what will come.
You may also leave instructions for your caregivers that you wish your children to receive therapy or be in grief support groups as another way to help them deal with their profound loss once you are gone. And as a single parent, know that you have done the best you can do, have fought as hard as you can fight, and have faced this final battle with courage and good judgment.
Does a Child’s Age Influence Their Understanding of Death?
It is important to take into account the child’s age when deciding to be more direct about the idea of death. Generally children younger than five are not able to understand that death is final, permanent, and happens to everyone. Children at this age may expect that someone who has died will come back. They can’t understand the finality of death. It often takes time and growing up for them to realize that the parent they loved will not return. So when a child asks if they can draw a picture to "give Mommy for Christmas," they are only expressing what they cannot understand. Do your best to try to give them accurate information which they can build on as they get older.
Between the ages of 5 and 9, children are better able to understand, but they see death as a monster, ghost, bogey-man or some other such creature. Death takes the form of an outside person who can come to catch them and if they run fast enough, they can escape. Children in this age range worry about monsters under the bed, witches, or devils, and it is often difficult to reassure them that such creatures don’t exist. They may also think that the other parent or another loved one could have prevented the death from happening. It is sometimes very frustrating and painful to try to persuade a child that a parent has really died. It is tempting to just let the child believe in the fantasy. But that won’t work because the parent just doesn’t come back. Be patient with yourself in these discussions – don’t be hard on yourself that somehow you can’t penetrate a child’s normal defense against such a difficult reality.
Usually after the age of about 9, children are able to understand the finality of death. That doesn’t mean that the child won’t continue to fantasize sometimes about Mom or Dad coming back, but with gentle reminders they usually can accept the reality. Understanding doesn’t come in one brilliant flash but gradually over time when the truth has a chance to sink in and the child can more easily tolerate the loss.
Adolescents may have a particularly tough time with the loss of a parent. If you think about what a teenager needs to accomplish in growing up, this is easier to understand. The task of the teenage years is to achieve a separate identity from their parents and discover who they are as grown-ups. This search for their identity doesn’t stop once adolescence is completed. The struggles that go on between parents and their teenagers are a normal and necessary part of gaining a new identity.
Teenagers often behave in opposite ways – one day they feel independent and the next they retreat into the safety of childhood. As every parent of a teenager knows, it can be a delicate balancing act between giving a teenager enough independence to learn and experience the world while protecting them from what they are not yet mature enough to handle. These struggles go on in every household and often leave the parent weary, but proud of their maturing children.
When a death occurs in the middle of this phase of a child’s development, he or she can have more trouble achieving an identity separate from the parent. This doesn’t mean the child is forever damaged but that it will be important for them to have relationships with other adults so they can continue to develop a sense of self.
What Other Factors Influence How a Child Understands the Death of a Parent?
Age is not the only thing that impacts how a child gradually comes to understand a parent’s death. The child’s relationship with the deceased parent, their relationship with the surviving parent, and the access to other supportive people in their lives influence how a child will come to terms with this difficult loss.
If the child’s relationship with the deceased parent was a positive one, it will be easier for them to resolve the loss. It’s natural to want to assume that all relationships between parents and children are positive, but the truth is that human relationships consist of both positives and negatives. Most parents do the best they can to nurture and love their children, but most relationships are complex.
Children who have a troubled relationship with a sick parent may have a harder time dealing with the loss because of unresolved issues. While parents love all of their children, some children present unique challenges. There are children who have difficulty controlling their anger; they may fight more than their siblings, or require more patience and understanding than another more peaceful child. The loss of a parent will affect every child in a family differently. Parents will have to take those differences into consideration when trying to meet a child’s needs.
A child’s relationship with the surviving parent is critical to the child’s continued growth. The remaining parent may feel overwhelmed with their own feelings in addition to the grief of their children. There may be little energy left to focus on their children’s needs, especially if the spouse’s illness were prolonged. Sometimes relatives offer to take care of the children in the period right after the parent has died. Although this offer can be tempting to a grieving spouse, it is usually not recommended since it may add to the child’s fears of abandonment. If possible, keep as many things the same for the children. For very young children who have lost their mother, it is better to have someone come to the home to take care of the child's immediate needs. This should help the child not to feel abandoned. Children also worry that something bad may happen to their other parent, so it is best to keep children in the environment where they feel most secure.
In general, other family members or close friends will help cushion the loss for the child. Children look to the remaining parent and other close family members to try to make sense out of what has happened. The people who are closest to the child should try and attend to the child’s powerful emotions. Children may feel resentful if well-meaning people they are not close to try to get them to express how they feel. The grief of a child is very painful to adults who are watching and trying to imagine what the child is feeling. Children are more likely to open up with people they trust who have been part of their world all along the way.
How Are Children Affected by the Surviving Parent’s Grief?
Parents worry a great deal about how their grief will affect their children. They worry about children seeing them emotionally out of control and whether their children will be damaged forever by the intense feelings that come with losing their spouse or partner. Before the death of a partner, people start experiencing something called anticipatory grief. This grieving process starts before the death actually occurs; this is a natural part of losing someone we love and may help people prepare for the final loss.
Children look to their parents for cues on how to react to the world and to the events that shape their lives. Seeing the raw grief of the remaining parent will not damage them as long as the child’s security needs are being met. There is nothing wrong with crying or other expressions of intense feelings. They are a normal expression of how people feel when they lose someone important to them. Witnessing these feelings gives the child permission to express their own emotions. If the remaining family members try too hard to suppress their feelings, it may be hard for the child to be open in turn. Without seeing sadness, a young child may not understand that the parent is really going to die. Unchecked hysteria can frighten children, but genuine feelings of sadness, tears, and anger are normal reactions for all who grieve.
People are often angry when their world is turned upside down as it is when a loved one is dying. People may even be angry with the sick person, which can then result in feelings of guilt. Anger is a normal reaction to an unexpected loss. It is expected that older adults will eventually die. It seems unfair that parents should die before their children are raised. Feelings of rage and desperation are normal as a result. So parents should not feel that they must totally avoid the grieving process. It is OK to say to their children that it makes them angry this is happening. It also gives children permission to express their anger that Mom or Dad will no longer be there for them.
Very young children may not be able to talk about being angry but may show it in their behavior. Most of the time, parents understand the stressed behavior of their children. Parents should be aware that a child who is misbehaving might be doing so because there is no other way to express their anger and confusion about the loss of Mom or Dad. "Are you feeling sad or angry that this is happening?" is a good way to invite the child to tell you what is behind their behavior. Tell them you know how much it hurts to lose a parent and that you feel the same way. Reassure children that their parent did not want to get sick and leave them but had no control over getting the cancer. This may seem obvious to the adult, but to children, their parents are often all-powerful and should be able to prevent bad things from happening. After all, parents do this all the time. They try to protect their children from things that will harm them or cause them distress.
Make sure your children know that the sick parent loves them very much and does not want to leave them. Cancer "just happens" and there is no easy way for a child to understand why this happened to their parent. A family’s spiritual or religious beliefs are often very important in how they understand cancer and cope with it. People who have a strong religious faith are often comforted by the idea that a higher power is present in their lives. This faith can help them cope with their suffering. If people have a belief in life after death, death may be seen as a new beginning. Some people go through a period of anger and struggle to match their spiritual beliefs with what is happening to someone they love. The question "Why me?" is one that most people ask and turn to a higher power for help with the answer.
So how do religion or spiritual beliefs affect how children understand the illness and death of a parent? The explanation of life after death is difficult to grasp because it is based on faith and may not seem clear to a child. A child might be comforted that Mommy is now in a safe place with no more cancer, or they could feel angry that their Mommy has been taken from them. The child will understand death in the context of what the family believes.
If your family does not believe in a higher power or an afterlife, simply talk about your personal beliefs. In time, the child will develop his or her own belief system which will make some sense of a parent’s death.
When Death Is Near, Should Children Be Involved in the Actual Event?
The age of the child determines the answer to this question. Given the fact that cancer is a chronic illness which may last many months or years, children will have been around for much of their parent’s experience. Hopefully, the child will have been been given appropriate information all along and have an understanding that their mom or dad is nearing the end of life.
When a parent becomes sicker, there is a natural tendency to protect the child from the sometimes upsetting signs of advanced disease. Parents don’t want their child to see them nauseous, or to realize their mom or dad is too sick to pay as much attention to them. But it is impossible to protect them from everything, least of all from the fact that their parent is more tired, has less patience with them, looks sicker, and is less able to get around. Shielding children from these realities may delay their adjustment further. So use these symptoms as a way to help children understand that the parent is closer to the end than before. Other friends or family members may be able to help young children and their sick parent spend as much quality time together as the parent can physically manage.
Young children do not need to be present when a parent actually dies but it is important for them to remain in their own home where they feel the most secure. It may be tempting to have a child stay with another relative during this time but that can create other problems for the child. Children who have had this experience often resent it and tell us that it made them feel excluded from their family. They felt that their relationship with their parent was not important and it was assumed that they could not possibly cope with such a scary and terrible thing as death.
If a parent is in the hospital children should be allowed as much contact with their parent as possible. The same applies to a parent dying at home. Children should also be encouraged to continue to take part in whatever activities they enjoy normally. Young children cannot be expected to keep a vigil at their parent’s bedside.
Young children (under the age of 6 or 7) enjoy a physical relationship with their parent. They enjoy being cuddled, played with and being cared for to whatever extent their sick parent can. It is important to continue that as long as possible, not only for the sake of the sick parent but also for the child.
If the child is older than 7, adults should follow their cue about how much actual time they want to spend with a dying parent. If a parent is at home, give a child regular activities that they can participate in with their sick parent, such as playing a favorite game that the patient can easily manage (such as a board game), or helping with homework if possible. These brief periods of time will be sweet memories for the child in the future. Those feelings of closeness will be important when the parent is no longer physically there to comfort the child.
Teens are capable of spending more time with a sick parent and of helping with some of the care. Their comfort level in doing so will depend on their relationship with the parent, school demands, and their social needs. Since teenagers are in a phase of their lives when they are naturally separating from their parents, finding the right balance between the time spent with a sick parent and time with other aspects of their lives can seem challenging. Teens can do household chores. It is natural to depend on them to pitch in during a crisis. In fact, teenagers get satisfaction from being trusted enough to help out when the family is in upheaval. It is important to ensure the adolescent is still able to have time with their friends, participate in school activities and have parts of their lives separate from the family. An adolescent is affected by their interactions with their peer group and by activities in the community. It’s good to check in every now and then with teenagers to see if the balance between home and the rest of their lives is being maintained.
An adolescent may want to be present when a parent is dying and if the patient is comfortable with that, it should be supported. Some conflicting feelings are normal since there is fear and uncertainty involved. It might be useful to ask someone from the medical team to describe what is most likely to happen. If a child wants to be with his or her dying parent, he or she should not be alone. The other parent or a close family member should be present during the experience. If children do not want to be involved in the death of their parent, that wish should be respected also.
How Can Children Be Prepared for the Funeral?
Years ago, people believed that children should not be included in funerals because this would be too difficult for them, they were too young to understand, and they would be frightened by other people’s distress. We have learned differently now from children‘s experiences. Children often felt betrayed when they could not say good-bye to someone they loved. They felt that their relationship with the person who died was not valued, that death was not a natural part of life but instead something too frightening to confront, and as a result that they were emotionally not able to cope. They felt these effects for many years after their parent’s death.
It is now common for children to take part in the ritual of a funeral or memorial service because they, too, need to say good-bye. Attending a funeral helps them understand that death is final. Explain to your children that a funeral is the way we say good-bye to the people we love. Depending on their age, their attention span, and on how much they need adult supervision, children may participate in all or part of the ritual.
The nature of the funeral service varies depending on the religious beliefs of the family. In many Christian faiths there is a viewing with either a closed or open casket which precedes the actual church service and burial. In the Jewish faith, there may be a ceremony in the synagogue or a graveside service. For some people, cremation (burning a body to the remaining ashes) is the preferred ritual.
A child should be prepared for the ritual with enough detail so they know what to expect. If there will be a viewing with an open casket, the child needs to know that. Depending on how young they are, it might be useful to review what it means to be dead. People will come to the funeral home to visit with the family and offer their sympathy, prayers will be said, and other routines will be followed depending on the particular ritual. If there is a church service, what will happen there should be described, followed by the trip to the cemetery where the casket will be placed in the ground and covered.
Whatever social ritual may happen afterwards should also be explained. Children sometimes have a hard time understanding what looks like a party after services where people looked pretty sad. Explain that people can’t be sad all the time and there will be other times when the sadness will come back. The time that people spend with their friends after a funeral is important as memories of the dead person are shared and people receive comfort from others who care about them. Often these memories of happy times comfort us. Children also should expect some ongoing sadness that gradually eases as time goes on.
Children also need to be prepared for the emotions they will have during a funeral. This may be one of the few times they see people close to them crying. Children can cope if they see funerals as the way we say goodbye to people we love. Children will usually want to take part in this ritual with their family. If they seem frightened by what they imagine a funeral to be, they probably have some misconception in their minds about it. It is a rare child who does not want to join in something his whole family is doing, so it is wise to check out whatever incorrect ideas the child may have. They may not fully understand the transition from life to death and worry that the person is still alive when they are put into the ground. Remind them again what being dead means and that the person as we knew them is no longer here. Emphasize that the dead parent is no longer suffering and no longer feels any pain.
How Can Cremation Be Explained to a Child?
Cremation is harder to explain to children because the body is disposed of by fire. If a child is not totally clear on the real nature of death--that the person no longer sees, feels, thinks--this can be a scary idea. Reassure the child that the person is not able to feel anything anymore and that their body will be turned into ashes, which will then be buried or kept in a special place. Avoid using the word “burn” in discussion with the child, since it may make the child think of the person being in pain.
How Should Your Child’s School Be Included?
Hopefully, you have spoken to your child’s teacher or guidance counselor about the illness and possible death of the parent. This helps the school watch your child and let you know if they are having any problems. If a child is troubled, it will usually appear in the school setting, so a teacher who is not aware of what is going on in the child’s life is not prepared to help them to cope with it. The school can be an important asset because they are usually aware of how a family crisis impacts a child and how to help them deal with it. A teacher or guidance counselor might spend some extra time with the child, especially since life at home may be so chaotic. If a child starts having trouble with grades or behavior, the teacher needs to know the reason so that their problems are understood and addressed in context.
Sometimes children don’t want anyone outside of the family to know what is going on. They worry about what their peers will think, so it is important for you to try and get your child to express what he or she is feeling. Children hate being different from their friends, so those feelings need to be heard. Try to help your children see that a parent’s illness is no one’s fault and that he or she is the same person as before the illness. The teacher may be able to help the child talk about the illness to classmates and answer other children’s questions. Perhaps the teacher can engage the child’s peers in what they might do to help their classmate get through a difficult time. It is almost impossible to keep a serious illness a secret and the child needs to know that it is not necessary --that people usually want to help. Also, when the death occurs, a child can receive great comfort from his or her classmates’ attendance at the parent’s funeral or even a warm condolence card or videotaped message of concern. In this way, the child receives the same support that the adults in the family hopefully are receiving from their friends.
Additional Resources
More Information From Your American Cancer Society
We have selected some related information that may also be helpful to you. These materials may be viewed on our Web site or ordered from our toll-free number, 1-800-ACS-2345.
The following books are available from the American Cancer Society. Call us at 1-800-ACS-2345 to ask about costs or to place your order.
National Organizations and Web Sites*
In addition to the American Cancer Society, other sources of patient information and support include:
Association for Death Education and Counseling
Telephone: 847-509-0403
Internet address: www.adec.org
Centering Corporation
Telephone: 402-553-1200
Internet address: www.centering.org
GriefNet
Rivendell Resources, Inc.
Telephone: 734-761-1960
Internet address: www.griefnet.org
Hospice Foundation of America
Telephone: 800-854-3402
Internet address: www.hospicefoundation.org
National Caregivers Association
Telephone: 800-896-3650
Internet address: www.thefamilycaregiver.org
*Inclusion on this list does not imply endorsement by the American Cancer Society.
The American Cancer Society is happy to address almost any cancer-related topic. If you have any more questions, please call us at 1-800 ACS 2345 at any time, 24 hours a day.
Revised: 01/24/2006
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