"Lillian" cared for her husband, "Paul," through a long, terminal illness. The days immediately preceding Paul's death were particularly traumatizing for Lillian, as her husband suffered a series of uncontrollable seizures. Compounding Lillian's emotional distress, her daughter, one of three adult children, insisted that "everything possible" be done to continue treatment of Paul. Even when Lillian explained that Paul had made his wishes known through an advance directive, her daughter wouldn't accept it. Relationships within the family became strained.
When Paul died, Lillian felt some relief that his suffering and her own anguish were finally over. During the funeral and over the next few days, Lillian had the support of her close family and friends. Then people returned to their own lives.
As she adjusted to life on her own, Lillian was well aware of the things she "should" do for herself: exercise, resume volunteer activities, accept a friend's invitation to join a book club, and so forth. But no matter how much encouragement she received from friends or how much she told herself she should do something, Lillian felt highly ambivalent. She wanted to stay home and so she did.
Finally, Lillian called a counselor she had seen during a previous episode of depression. "It wasn't just Paul's death," Lillian explained, "but all the things that led up to it." She went on to describe how overwhelmed she felt, even to the point of being paralyzed with fear and indecision. Throughout their marriage, Paul had taken care of everything, from the finances to arranging home repair. As his illness progressed, Paul had insisted that Lillian take over these responsibilities, but it was still new to her. Being so overwhelmed by daily life added to her feelings of ambivalence toward new and even previously pleasurable activities (gardening, seeing friends, etc.).
Lillian's story illustrates what can happen to a support system member, whether a spouse/partner, adult child, sibling, or close friend, when a loved one faces a traumatic health challenge. These nonpaid and often primary caregivers may have their own physical and mental health issues, as is frequently the case among elderly spouses/partners. These stresses compound with the additional responsibility of taking care of a loved one.
As a case manager and a psychologist, I frequently encounter family members and others within the support system of a severely ill/injured person. During their sessions, they often speak about what the loved one is going through: his/her care and treatment, frequent visits to doctors and specialists, hospitalizations, intensive treatment and/or surgery, and need for assistance with self-care such as bathing and dressing. Their worries often center on what will happen to the loved one, or how the family will cope if he/she does not recover sufficiently or dies. These concerns frequently overwhelm the support system member's concerns about his/her own physical and mental health. Reminders that they need to take care of themselves first to be able to take care of others may not be enough. Rather, it takes a deeper exploration of the feelings confronting the support system member.
What, then, can the professional case manager who advocates for the patient (the "client" receiving case management services) do?
It is important for case managers to realize that the support system is a vital part of the "team" at the center of the case management plan to provide care and treatment for the individual. During the assessment phase of the case management process, the case manager determines whether the patient has a support system and the extent of the support system's involvement in the individual's care. In some situations, a spouse/partner or other family member may be the direct caregiver. In others, the patient may receive professional care such as in a long-term care facility or through home health, with additional support and decision making by the support system. Over time, the case manager may observe changes in the individual and within the support system. Knowing that the support system has a direct impact on health outcomes for the patient (as described in the accompanying article, "Supporting the Support System," in this issue), the case manager should be aware of these changes.
Case managers need not be trained psychologists or social workers to engage the support system, nor do they need frequent experience in the kinds of severe or traumatic cases that typically cause stresses within a support system. Using basic motivational interviewing techniques-asking open-ended questions and engaging in active listening-they can help draw out what a support system member is feeling and identify potential "red flags" that signal mental health issues such as depression or anxiety.
When rapport has been established with the case manager, support system members may be forthcoming in expressing their feelings. However, people react to stress differently. As a result, even when the case manager tries to engage the support system member, he/she may seem withdrawn or even disengaged. Or, like Lillian, they may seem ambivalent. For the observant case manager, these are red flags that the support system member may need help. The case manager can ask whether he/she has someone to talk to-a counselor or even a clergy person, for example. This may be the encouragement that the support system member needs to seek professional help and/or to explore his/her feelings.
In Lillian's case, she did not receive counseling until Paul was in the final stages of his terminal illness. In retrospect, Lillian likely would have benefited from such help earlier on in Paul's illness. Nonetheless, when she was ready, the support she needed was there. By exploring her feelings of ambivalence, Lillian gradually found the strength and resilience to define a new life for herself.