Keeping Families Strong
Ileen McFarland Diane Breslow, MSW, LCSW
PSP, CBD, and MSA are very challenging diseases that have significant impact on patients as well as their families. It is important to respect and accept that each person in the family may have different reactions and coping styles. Nonetheless, family members will benefit from exploring how each of you can grow stronger while traversing this difficult journey.
Family Roles
You may notice that, once a diagnosis is given, family members assume different positions or roles in the family system. While not an exhaustive or rigid list, the following role descriptions may help you gain a better understanding of your family dynamics and feel less alone.
The Leader: Often, one family member steps up to become the Leader. They take control of the situation. They obtain a wealth of disease information. They initiate actions such as making medical appointments. They appoint themselves in charge of communication with other family members. And they are the one to offer support. Being actively engaged is one way that the family“ leader” deals with emotions.
However, the negative or flip side to this leadership role is that the Leader may become overburdened and burned out. Wanting to appear strong, they may have difficulty expressing emotions or asking for help, lest other family members view them as slacking in this role. Sometimes, the Leader can grow to resent those family members who are less involved than they are. Even if they do not verbalize these feelings, they will likely express them in actions.
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The Supporter: Supporters are more than willing to help, but they lay out clear boundaries. They are most comfortable taking on specific tasks that have a defined beginning and end— for example, accompanying Dad to a doctor’ s appointment. The Supporter may be reluctant to provide hands-on help and may seem distant from other family members. The Supporter may openly express feelings of anger or resentment, which can be particularly hard for Leaders, who view themselves as taking on the lion’ s share of responsibility.
The other side of the Supporter’ s role can be a sense of feeling excluded and uninformed about the patient’ s disease and treatment. Knowing that their involvement is“ only” task-related, the Supporter may feel that they do not have the right to ask for more information. Because they have set limits on what they will and will not do, they may also feel less valued, or de-value themselves. If they get a sense that other family members resent their boundaries, they may feel guilty or angry.
The Bystander: The Bystander pulls away during the course of the disease. They may reduce overall communication with the family and may avoid direct interaction with the person who is ill. They are very unlikely to take on caregiving tasks. Their lack of involvement often makes other family members feel taken advantage of, disappointed, frustrated, or angry. The bystander may have very understandable reasons for their distance.
Nonetheless, they are missing out on the rewards of caregiving: feeling helpful, feeling closer to the ill person or others in the family, or finding new meaning or purpose in life. Bystanders may feel helpless or ashamed about their role. They may become depressed, which, because of their self-imposed isolation, other family members may not recognize.