The terminal illness of a loved one may also impact on the roles people play in their family. For example, the head of the family whose main role is resourcefulness or problem-solving may find himself incapable in effectively coping with the situation. Or, a housewife who has always been dependent may suddenly be called on to take charge of so many responsibilities and important decisions.
The grief of the family members over terminally-ill patients starts even before the death of their loved one. Family members will grieve not only for the anticipated death (anticipatory grief), but for the losses that may pile up throughout the process.
The psychological manifestations of grief among family members are similar to those in the patient. There is initial shock and denial followed by sadness, anger, guilt, loss of emotional feeling, and feelings of loss of control. Actually the physical responses are also the same and may include shortness of breath, changes in sleep and appetite, gastrointestinal problems and fatigue. There may also be difficulty relating to others, including the patient. So apart from the difficult dying patient, the consultation-liaison psychiatrist will have to manage the equally difficult family care-givers.
Though in some cases, anticipatory grief may be considered a helpful coping mechanism, it may, in other cases, result in problems in the family. There are times when family members grieve so intensely in anticipation of the loss that they are unable to help the patient. On the other hand, there may be also times in which family members work through their grief while the patient is still alive. In this manner, they may then be distancing themselves emotionally from their dying loved one. This may further cause the patient to despair and the family to feel some kind of guilt when they assume such a matter-of-fact attitude.
The first step in helping the family in the grieving phase is to help the family to understand that at least some of their pain is attributable to grief and that is normal. It is very common for the family member who is most involved in caring for the dying patient, to apparently not show any signs of sadness. Actually, this is a functional way of dealing with a difficult situation and therefore, a defense. The possible problem later on with this kind of reaction from the most active care-giver is that the grief and feelings tend to eat away inside the person and come out in anger or in later, very severe grief. Talking about the losses and feelings would be most beneficial for the family members. They should not isolate themselves emotionally nor pretend not to be affected. It is very helpful for the family members to discuss with the patient and grieve with the patient together.
The patient and the family care-giver will feel isolated if relatives or friends do not visit them. Helping decreases or minimizes isolation. This involves pooling the family’s personal resources with the community resources. Some personal resources such as friends and members of the same church will not know what to do, but respond very well to being given a specific job to accomplish. It is thus the role of the consultation-liaison psychiatrist to give specific directions on the involvement of personal resources.
Feelings of uselessness and helplessness are part of terminal illness – especially the later stages – under almost any circumstances. The patient continues to deteriorate no matter how hard the doctors and other people work; no matter how much people care and pray; and no matter how much money is spent. Ultimately, it seems there is nothing one can do to stop the suffering. Helping when feelings of uselessness and helplessness are a problem includes learning how to provide what care is possible. It is very important for the family care-giver to understand that at some point the primary purpose of care changes from curing to caring.
The hospital health care providers, most especially nurses and resident physicians, are responsible for teaching family members how to deal with problems and how to prevent problems that might emerge. It is very helpful for health workers to inform the patient and the family members that they have the right to ask explanations about procedures, treatments and about the prognosis of the illness. Family involvement is important even in families able to pay for around-the-clock total patient care. Even the younger family members and kids can also help in some way.
Sadness is an expected emotion in the family care-givers of the terminally-ill person. Depression may be manifested as deep sadness, fatigue, inability to experience pleasure, feelings of helplessness and worthlessness and difficulty sleeping. These characteristics also are manifestations of grief.
Terminal illness brings with it tremendous stress to families, and many families react with anger. Anxiety, helplessness, physical exhaustion and other factors cannot help but be manifested in anger which may be directed to health care staff, institutions, the patient, and/or other family members.
It is crucial that the family care-giver’s anger be processed so that the anger is expressed verbally rather than with physical violence. Family members should be guided in trying to understand the psychodynamics of such angry reactions by trying to identify the circumstances and the feelings that immediately came before the anger.
The anxiety of the family care-giver is usually related to the finality of death. But the symptoms of anxiety manifested by the patient and the family care-giver are very similar and may come in the form of dread, fear, nervousness, irritability, sleeplessness, changes in appetite, shortness of breath, craving for alcohol or drugs, and so on. Loss of control plays a major role in anxiety.
Anxiety in the family can be prevented by making the members verbalize and express their grief. Overwork in rendering physical care to their dying loved one leads to physical exhaustion, which can trigger anxiety. Providing respite care and helping them structure the scheduling of shifts for the family care-giver will decrease the problem of anxiety. Talking about the feelings of anxiety and what seems to cause and/or intensify them is helpful. Again, the most likely to develop anxiety is the most involved family care-giver. Medications are indicated when anxiety is severe or when it affects the ability to provide care. An anti-depressant may be indicated when anxiety and depression are mixed. Short-acting anti-anxiety medications are usually the better choice for both patients and family members.
Taking care of a loved one with terminal illness is physically, emotionally and spiritually tiring well beyond what many people expect, especially when one family member has total responsibility for the care. Physical exhaustion and loss of sleep may compromise one’s health. Some care-givers become irritable, demanding and critical of others and eventually drive away other potential care-givers in the family. Thus it is important to recognize early the signs of care-giver fatigue. A care-giver’s work and sacrifice must be acknowledged by others and even by the patient. Since staying healthy is important to continue providing good care to their loved one, the health of the care-giver must also be evaluated. The family should be informed of the existence of the hospice care in the hospital and how its services can be best utilized for their dying loved one. Family members should not wait too long to bring in hospice care in order to prevent the so called family care-giver fatigue.