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Helping Children Understand

Written by Jane Donald on January 22, 2014. Posted in magazine article

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Helping Children When a Family Member Has Cancer:Dealing With a Parent’s Terminal Illness

For most people this is a painful and personal topic, and the information shared here may be hard to read at times. You might want to set aside a time when you can read it without interruption.

A terminal illness cannot be cured, treated, or controlled and is expected to lead to the person’s death. By the time you are told your cancer is terminal, you have probably already been dealing with it and its effects on your family for many months or even years. A few people find that they have cancer when the disease is quite advanced, so they may not have as long to deal with its effects on their family. But no matter how long cancer has been part of your life, it can be very hard for you and your family to think about all the things that go along with the end of life.

As hard as it might be to think about what children need during a terminal illness, we hope your burden will be eased in some way by taking steps to help them prepare and cope. All parents want to protect their children from the pain that life can bring. Although it’s 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 after you are gone.

This is one of six documents covering topics to help children when someone in the family has cancer. The others cover information on: diagnosis, treatment, recurrence or progressive illness, losing a parent, and psycho social support services.

Will this experience affect my child’s happiness and ability to enjoy life in the future?

Patients with terminal cancer often 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. In fact, children can and do go on to live normal lives even with the impact of a parent’s illness and the loss they go through when a parent dies. This may be hard to believe, but most children, with the help of family and others, learn to be happy again and enjoy their lives. It may give you strength to know that you can affect how your children feel about your illness and how well they are able to move beyond it 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 fade into the background. Having a parent with cancer is only one part of your child’s development and does not, by itself, lead to 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 think that if cancer is “terminal” it means the cancer cannot be cured and the person is dying. But just because an illness cannot be cured does not mean it cannot be treated. In many cases, cancer can be treated and controlled—sometimes for long periods of time. The goal is to manage the symptoms, even if you can’t get rid of all the cancer. Over time, your body may give you signals that the cancer is still there, things like weight loss, tiredness, and increased pain. These problems can be treated to keep you as comfortable as possible. This is different from treatment to cure the disease (curative treatment), although some of the treatments used are much like those used to try to cure cancer.

Some people feel they are considered terminal when active curative treatment is no longer helping. Others may want curative treatment until the very end whether or not the doctor thinks it will help. Regardless of what your medical team tells you, or even the signs of physical decline in your body, it may be 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. As your cancer worsens, your doctor can give you an idea of how long you may expect to live. But keep in mind it’s only a guess based on past experience with other patients—there’s no way to know for sure. Most people try to be realistic about what the future holds and accept that their time is limited, but at the same time they focus on living one day at a time and making the most of each day.

Parents facing this situation often wonder when their children need to be prepared for death. Children, especially young ones, have trouble expecting a parent’s death for a long period of time. This “not knowing when” is a very tough reality for anyone, but especially for children.

It’s 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 need to try to deal with your own feelings first. Once you have spent some time coming to terms with your own fear, anger, and sadness, you are better able to help those who depend on you.

If you are having trouble sorting through all of the emotions that surface at this time, think about 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 if you depend only on yourself. Oncology social workers, nurses, psychologists, and other cancer care counselors have experience and education that prepares them to work with families in your situation. Let yourself be helped by their experience and what they have learned about coping with the problems of a serious illness.

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 that can help you at this time, tell them you need more information so you can make plans for yourself and your family.

This may be a good time to look into hospice services in your community. Hospice services can be delivered wherever the patient lives, be it the hospital, a nursing home, or an inpatient hospice facility. Hospice programs use 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 are covered by Medicare and at least in part by most insurance plans.