WHAT WE CAN - AND CAN'T DO
As we begin our work with families, we should try to keep in mind the humbling fact that we are not miracle workers. We will encounter families with problems of all kinds and many problems we cannot solve, but we can demonstrate our interest and concern, thus strengthening the family so they themselves can cope with their life situations as they choose. If we see signs of economic hardship, this should be reported to the Hospice Social Worker who can refer to community resources. If more volunteer help is needed, such as transportation because the family car has broken down, this should be reported to the Volunteer Coordinator. Such tangible needs are rather easily identified, but the need for professional assistance in the case of a marital conflict, or counseling for an abnormally depressed widow, may be more difficult to detect. When you are concerned about emotional reactions in a family to which you are assigned, discuss your concerns with the rest of the team - don't try to handle the situation yourself.
AGE OF THE PATIENT
The impact of advance illness on the family system varies with the age of the patient. It is devastating when a young mother or father is the patient. Then there are young children who must be supported in their grief as well as needing care in their daily practical needs. There is the shock and confused emotions of the widowed spouse, and there is a drastic reorganization that must take place in the roles within the family system and the tasks to be done. In the case of an elderly patient, roles may then be reversed.
PAYING ATTENTION TO FEELINGS
The family living with a diagnosis of advanced disease of one of its members is a family in limbo - afraid to hope or plan for the future, struggling with the prospect of death and loss - not only the loss of the patient, but the loss of the family life as it has been and will never be again. Underneath is the poignant sense that death awaits each of us. During the time that the patient is in treatment, family members ride an emotional roller coaster. Now there is hope, then despair; then again a glimpse of hope for recovery and "life as usual." Mourning begins and if the illness is sufficiently protracted, the work of grief may have been done while the patient still lives. He/she may feel like an anachronism, aware of being a burden. This creates enormous guilt in the patient's immediate caretakers, who "know he knows" their weariness and possible resentment.
Just as the patient goes through various stages in his/her feelings about illness, family members also experience the emotional states that Kubler-Ross describes: denial, anger; bargaining, depression, and struggle towards "acceptance." Like the patient, the family does not experience these feelings in any set sequence, or remain steadily at any one level, which complicates the situation. The patient may be in one emotional phase on a given day (depression, for example) while most of the family may feel denial or anger. Making matters more difficult, the wife may be denying the seriousness of the patient's state while one of the children may be angry and depressed - or any one of a number of other combinations. This means that the volunteer going into the home has to be prepared to listen and to accept a variety of emotional responses without judging or criticizing. It is necessary to be interested in all those present in the home, the quiet child as well as the talkative one, even if this interest can be manifested at first only a friendly greeting or a few moments of conversation.
POSSESSIVENESS
The volunteer must resist the temptation to become possessive of the family of a patient. Although each family has a primary volunteer; often several are needed. TEAMWORK rather than competition best serves the family.
DON'T TAKE SIDES
It is important to avoid taking sides in a family situation. Some times we may feel that the patient is misunderstood, or that advantage is being taken of one family member by another. In these cases we may find ourselves angrily taking sides. But remember that our assignment is not to set ourselves up as more understanding and loveable than the patient's own family. Instead, we should try to foster communication and understanding among family members in every way that we can, working closely with the rest of the team members on the case. Some families are very loosely organized, with each member doing "his own thing." In these cases the team can tactfully encourage more cooperation and mutual responsibility. Other families are so closely knit and fiercely independent that they find it difficult to accept volunteers in the home even though help is badly needed. Here, a very slow but friendly approach is required.
REMAINING NON JUDGEMENTAL
We must also guard against imposing our own standards and values on the families we serve, and we must always try to avoid being judgmental. Respect for the family means recognizing the fact that each member will have to deal with the crisis in his/her own way, and sometimes these ways are not our own ways. Respecting differences between the family and ourselves goes far beyond personality characteristics to ways of behaving that are culturally and ethnically determined. Some cultures react to a crisis with loud expressions of grief. This does not mean that they are less stable or less mature than others who are subdued and undemonstrative. On the other hand, someone who shows grief less openly is not necessarily cold or unfeeling. More difficult for the volunteer to tolerate may be the differences in housekeeping standards and cleanliness. Here we must distinguish between a genuine difference in outlook on these matters, and a painful deterioration in the upkeep of the home that has come about through illness and age and that the patient would appreciate having remedied.
