Chronic, degenerative conditions such as Parkinson’s disease affect the entire family, not just the person with the disease. Roles and relationships among family members change as the condition progresses and the needs of the person with Parkinson’s increase. Most families struggle with the challenges of these changes. It is difficult, to say the least, to watch a loved one follow the path of a degenerative disease. The ways in which family members meet these challenges, however, can draw them together rather than tear them apart. humor, compassion, and empathy are crucial in shifting focus from a progression of loss to the possibilities that remain.
Often a spouse or an adult child becomes the primary caregiver for the person with Parkinson’s. For a person with Parkinson’s who has been the head of the family it is difficult to cede control to others. It is also difficult for other family members, particularly adult children, to step into taking control. Maintaining a position of collaboration in which the situation is a partnership can help everyone take a positive view of the changing circumstances. The person with Parkinson’s and family members should discuss crucial aspects of future care, such as assisted living facilities and advance directives, as early as possible in the course of the disease so that everyone involved clearly understands the preferences of the person who has Parkinson’s.
This is not an easy dialogue to initiate, but postponing it does not make it easier. Early on, the person with Parkinson’s should make, and be fully supported by family members in making, decisions about the future from treatment options to end of life care, unless there are reasons to question the person’s ability to make informed choices. The person’s capacity to make them takes a tremendous burden off both him or her and family members who would otherwise have to face such decisions without the participation of their loved one. This process is more stressful in the end and can lead to disagreements, hard feelings, and guilt among family members.
The challenges that Parkinson’s imposes on families are not easy to confront and often cause considerable frustration. This is normal and natural. Despite best intentions, not all families are able to approach the situation collaboratively. Sometimes unresolved family issues get in the way. Family members may have different concepts of what it means to be involved in the person’s care or may themselves be emotionally unable to cope with the challenges of the disease and the changes that are taking place in their parent or spouse. support groups provide safe forums for sharing experiences and learning from those of other families and caregivers.