On Families With Cancer

By:  Katherine Leonard, Ph.D, Health Psychologist


To begin with I would like to talk about families in general. When I started working at a family counseling agency over twenty years ago, I was told that a family was two parents and children living together. Then some years ago a U.S. census survey turned up the fact that the so called standard family is found in less than 10% of households. The rest of the households have one or more single adults, childless couples, single parent families, blended families, older people who's children have left home or some combination of the above. Some families are very close geographically but don't spend any time with each other while others live in far flung places but keep track of each other and will come any distance when they're needed. Families may even include an assortment of non-relatives who have become honorary aunts, uncles, sons, daughters or grandparents. So when I talk about some characteristics of families, keep in mind that there are no standard definitions and that families vary as much as individuals. If there were a typical family pattern (no matter how rare), it would have these stages: Two single young adults get married. They have some children who are very nice until they become adolescents. Eventually the children leave home and start families of their own. Their parents can look forward to retirement and visits from the grandchildren. Now when cancer strikes a family the impact will vary by where the family is in this life cycle. If a parent with young children gets cancer, he or she might feel the threat of not seeing their children grow up. These children have a great deal to lose as well because they need both parents to support and guide them. All the worse if we're talking about a single parent family.

The family with adolescent children may not need to be concerned about how their children will fend for themselves. The adolescents, however, may feel the pull to stay home and care for their parent just at the time that they would like to be making steps toward independence and adulthood. Research on daughter of women with breast cancer indicates that those girls who were adolescent when their mothers had cancer were most involved in their mother's care and often put off plans to go away for a job or university.

The family in later years is perhaps the one we see most often in cancer treatment centers because around 85% of cancer patients are over the age of 50. In all likelihood that means another generation has arrived who may be anywhere from toddlers to teenagers. And that means more people to feel the impact. The adult children of cancer may be forced to face the own parents' mortality just at the point that they are learning how to be parents.

The impact on the family also depends on the role of the family member who is sick. When the main provider or breadwinner is ill, the family may experience financial hardship. The other parent may have to assume some of the task of providing for the family by going to work or working full-time -- and become less available to the children. Also financial hardship may mean tightening their belts and fewer recreational activities such as hockey, dancing lessons, school trips, etc. What happens when the main nurturer of the family is sick? That may be mum or dad or some other parental figure. Going back to our traditional two parent family, the other parent will try to take on the role of giving care and sustenance. But they may have a difficult time caring for their sick spouse and having enough time for the children as well. The sick parent may well feel left out because they can't physically care for others as they used to. In any case both children and parents feel the loss. The decision-maker may be any adult who makes a certain type of decision that is essential to family functioning. For example who decides when family rules have been broken and what to do about it. The decision-maker may not be the same as the parent who disciplines. You know the old line about "Wait till your father gets home and then you'll get a licking". So who takes over when one parent is sick and the other is occupied with caring for the sick one? Sometimes the oldest child of the same gender tries to fill the parent's shoes. In one family when the father was in hospital the oldest son who was about 17 thought he should take over dad's role in disciplining his brother and sister. When his 16 year old sister came in late, he "grounded" her. Boy was she mad. There's another role I want to mention that may be filled by an adult or child. I call the role the emotional center for want of a better word. That's the person who somehow knows what to do to glue the family together, to make people laugh, to defuse a tense situation with distraction. I've seen a young child do this in a family session by sometimes being comical or cuddly or even cranky. Whoever this family member is, when they become sick or die it feels like the center of the family is gone and "things fall apart".

One complex way that families differ from each other is in their belief systems. Beliefs cover a wide range of subjects from what is a family to how do we deal with illness. Some beliefs are part of a cultural or religious heritage. Although staff here at the Cross respect cultural differences we may not know how your family does things and you may have to teach us about what you consider proper. Cultural beliefs and traditions are such a large field that I won't have time to go into them now. So let’s talk about specific beliefs around cancer, illness and illness behaviors.

When somebody is diagnosed with cancer, the universal question is "why me?" or "why them?" There are probably as many answers to those questions as there are individuals who ask them. Families may see cancer as a punishment or as a special challenge. "God knew that our family could handle it -- other families would have fallen apart." A father, who's son had leukemia, prayed and said he would give his own life if his son could get well again. His son did survive but a few years later the father was stricken with a different form of cancer. Then the father's dilemma was that if he were successfully treated, would he be going against his agreement with God? So beliefs affect how people behave. Also families have beliefs about illness behaviors. I remember a nurse telling me that in her family "illness got two days" and then the family member was expected to return to school or work. The question is what happens in a family like that when the cancer has not gone away after two days? And family members may react in different ways to being ill. One family member may be used to being indulged when sick while another typically withdraws from the family center during illness. These two may have a hard time understanding each other's responses to illness. Needs of families with cancer:

Communication comes first. And all other needs can be dealt with if family members know they can talk to each other. What needs to be talked about? Well, the nature of the crisis and what it's going to mean for each family member. A lot of this information does not come out in the beginning and the picture changes over time. Also recognize that family members vary in their ability to tolerate information, especially medical information. Parents often have concerns about how to talk to their children about cancer. When talking to children, I try to remember that children develop their abilities to think and understand while they are growing up physically. Even very young children are likely to be aware of changes in their families and try to figure out what is happening. If no one tells them anything, they will make up their own explanations for why things are different. So I usually start by asking a child what they know or think they know about what is going on in the family. That way I can clear up any misunderstandings. Then I ask what they want to know more about and try to answer their specific questions in language that they understand. I'm often impressed with how well parents know their children and how they find ways of explaining difficult things using experiences that the children understand. I have found also that children accept "I don't know" when we come to the limits of our adult language.

Redistribution of roles and tasks in the family is not easy to do in the best of times. I can hear the kids saying "but it's not my job" or "but I did it last time". Actually in the beginning most family members are a bit heroic and willing to do a lot more than they would normally. And some jobs can be left undone for awhile. It's just when the disruption of cancer treatment goes on for a long time and the situation keeps changing that the family has to reorganize to get things done. Sometimes Dad can wash the dishes or sometimes Mom can go to your hockey game, but other times they may be too sick to get out of bed. I suspect that most jobs get reassigned by default, that is whoever notices that they need to be done gets to do them. Some of the research I've read suggests things go best when jobs are assigned to those who have the individual strengths and resources to do them rather than by conventions such as girls do the cooking and boys mow the lawns.

There are many kinds of losses family members experience when one is ill. I mentioned the loss of role functions that the sick person may be unable to fulfill. To the children it may seem like they've lost both parents because one is sick and the other is looking after 'em. Each member may feel a loss of security about the future realizing that anyone of them might be threatened with illness. Of course the greatest loss happens if the person with cancer dies. It appears to be human nature to prepare for such a potential loss by beginning the grieving process even before the loss occurs. Family members may find themselves feeling angry or depressed, which are normal signs of grieving, and then feel guilty because the one they love is still alive. Sometimes family members feel frustrated in their inability to do anything to relieve the suffering of the one who is ill. They may not be able to tolerate their own helplessness and may take their frustration out on others inside or outside the family. Healthy family members, especially children, need to continue to be involved with their normal activities such as work, education and recreation. Even the parent who is caring for the one who is ill must look after his or her own health and well-being so that he or she can have something to give to the others. Self care becomes even more important if a family member is dying because the stresses within the family are so intense and unpredictable.

Families may need to regroup and reconsider these needs at different times during the treatment and recovery from treatment. Cancer may become a chronic condition that requires further adjustments. Even when a cancer has been eliminated, the experience of living with cancer is likely to have an impact on the patterns of family communication and interaction for years to come.

Resources:

"Taking Time: Support for People with Cancer and the People who care about them." a free booklet available from the National Cancer Institute.