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Family And Friends - Cope, Compromise And Hope
Ernest H. Rosenbaum, MD and Isadora R. Rosenbaum, MA
There are many resources for patients with cancer, but probably the greatest allies to the physician are the close family and friends who are available for help when the need arises; they offer a reserve that cannot be found in any other resource. Their continued love and compassion give hope and courage to the patient.
We all need love. The person who is ill is particularly vulnerable to the feelings of being alone and abandoned. Thus, understanding of the patient on the part of their family and friends cannot be overestimated. Without their support, the patient's recovery process may be prolonged.
Illness, incapacity and the threat of death are difficult subjects for patient, family and friends to discuss together. They may want to talk to each other but be hindered in their desires because they want to protect each other or because they do not wish to face the truth themselves. This inability to communicate can occur with all people but may be worse under conditions of stress.
Family and friends faced with life-threatening illness of a loved one have the dual problem of trying to control their own fears and anxieties while giving encouragement and support to the patient. They may spend their time wondering how to ease the emotional suffering of the patient while the patient is busy worrying about the despair of those he loves. Each is searching for the most tactful way to deal with each other.
Our experience with patients has shown, however that a deliberate policy of candor and openness will create an atmosphere that is beneficial to all concerned. It can remove the burden of secrecy and open the door for the alleviation of apprehensions. Candor may not be easily achieved, for often people are not in the habit of speaking their deepest concerns. Even those who have established close relationships become fainthearted in the presence of cancer and the threat of death. To achieve openness and to maintain it under stress is part of the challenge of living with cancer.
Hearing what the other is experiencing can never be as devastating as what the imagination can conjure. Fears and frustrations can be talked about as they arise and not left to fester until they become too frightening to mention, or until a habit of withholding evolves into irretrievable isolation. The confrontation of each other's fears therefore becomes a means of keeping those fears under control. Candor will allow relationships to operate in a new realm, in which despair can be minimized or set aside and enjoyment and pleasure can resume their rightful places.
Candor between patient, family and friends includes a recognition of each other's needs as well as fears. Family and friends need to give, to feel they are doing something practical to hasten the patients' recovery, whether at home or in the hospital.
The separation caused by hospitalization is particularly traumatic to the family. They leave the hospital each evening and worry whether their loved one will ever again live a normal life, or whether even leave the hospital. Feeling impotent, they need to give of themselves. Fortunately there are many practical services a patient's family and friends can perform while in the hospital - - services such as feeding, walking, turning, massaging. These along with the offer of special foods, a favorite pillow, or a comforting hand, become the routine of a the daily hospital visit, giving solace to the patient, as well as family and friends.
When the patient is critically ill, it is not unusual for at least one family member to be in attendance around the clock. This may mean sleeping in a chair beside the patient's bed or arriving early in the morning. To obtain up-to-date information on the patient's condition, relatives may rearrange their schedules so as to be present when doctors make their rounds or a particularly helpful nurse is on duty.
When the patient is at home, functioning well, there are still many opportunities to give emotional and practical support. One need only consider the trials a cancer patient must sometimes undergo. Anxiety about a doctors' visit, wondering whether a new problem will be discovered, a new therapy recommended, transportation to and from the doctor's office, or dreading the side effects from the day's treatment. A family member or friend can offer the patient a ride or company on public transport. If everyone is working and cannot spend time during the day, there is still the evening, when the side effects from therapy may be endured. Patient, family and friends benefit from any means by which love and encouragement can be expressed.
To be realistic, however not everyone is able to be open, loving or intelligently supportive in a crisis. Even stable relationships may be severely threatened by the pressures of long-term illness. Latent problems may emerge, and anger and guilt may surface in sudden attacks and recriminations, or in indifferent or over solicitous behavior. The exhaustion and frustration of constant worry and care may break the most loyal supporter. Family and friends must be reminded that they need time to themselves and moments of rest if they are to keep emotionally and physically fit. Calling on other friends or relatives for assistance can provide a respite from the responsibilities and worries of constant caring.
Children of cancer patients often need special understanding. Absence of a parent during hospitalization and the fatigue following treatment may cause children to feel neglected and lost. Children may also feel they caused the illness; this misconception must be corrected quickly. Reassurance from other family members is important for children to realize they are still loved. Adolescents are particularly vulnerable to stress, as they may be asked to assume a supportive role to approximate a spouse. If this responsibility is beyond the capabilities of adolescents, they may rebel by not making hospital visits, or excessive drinking or drug use. Adolescents are adults -- up to a point -- but they still require the reassurance and comfort routinely given to younger children.
Lengthy illness can also break the most courageous of patients. When the patient has fought long and hard against cancer, lost or regained hope many times, and they realize the battle is not to be won, they may at times experience rage and depression that will focus on the nearest available person -- spouse, child, parent, friend or the nurse on duty. This anger usually manifests itself as irritation over trivial matters that normally would not even concern the patient. The person under attack needs to understand that this is not rejection but a cry of anguish.
In addition to anger and depression, a patient must also endure the endless boredom of being ill, as well as the fear of being a burden when he really wants and needs special attention. Ironically, the people from whom the patient wants this attention may be suffering from the same tedium or from feelings of inadequacy and guilt for being unable to relieve the suffering. They may not be able to cope with the reality in which the patient is imprisoned. The result may be a gradual diminishing of attention and care by family and friends with increased bitterness and fear of isolation in the patient.
No one should be blamed for the ways they respond to the crisis of a long-term illness of the threat of a change and loss. Some people and some relationships grow stronger, waver, and hold together, some collapse; and some experience new depths or love, respect and understanding.
The most important thing family and friends can do for the patient is to be supportive and give encouragement in doing everything to aid recovery. It is vital that they do not, however, err on the side of being over solicitous, thus depriving the patient of accomplishments that can give a sense of independence, purpose, self-esteem, and concrete proof of progress in returning to normal life.
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