Taken from the Behavioral Problems in Huntington's disease written by Dr. Richard Dubinsky
Family Dynamic Alterations
The tradition roles in the family involve the parents that provide leadership, nurturing, care, comfort and necessities and that of the child that must rely on the parent to provide these items. As we grow and mature the child takes on the roles of the parent as they become more independent. Eventually the child becomes a parent in their own right. They then have children of their own to take care of and also their parents may also require help as the grandparents now need assistance.
When a member of a family is ill, these roles can rapidly shift. While a child who is ill still remains a child, their level of independence diminishes. When the parent is ill, the child will need to take on adult roles while the ill adult becomes more child like in their need to be cared for. If the illness is short lived, the roles will be reestablished rapidly. If the illness is life long, as is Huntington's disease, once a person is symptomatic, the roles may never be restored.
When the parent is ill When a parent is ill and is no longer able to care for their child (children) the child's reactions may be:
- care for the parent
- become more independent
- turn to others for leadership, nurturing
- act out in order to get more attention
Some of the results of the parent's illness may be:
- neglect of the children
- require the child to do household chores:
- cleaning the house
- meal preparation
- abuse, neglect
When these problems become so severe that the family has trouble adapting, then counseling is needed. Counseling sessions can help to teach family members techniques to deal or work with the problems. Oftentimes only one or two sessions are needed in order to get the family working smoothly again.
Another excellent source of support can be found from other families with Huntington's disease.