Share positive emotions. Openly express love, affection, and appreciation of one another.
Accept each other. Recognize the humanness in one another; respect each person’ s efforts to cope under such difficult circumstances.
Define roles. As a family, make decisions as to who will take on a particular task. Recognize that roles will need to change over time.
Communicate. Set up routines to stay in touch; attempt to resolve conflicts directly and quickly.
Ask for help. Develop solutions to new and ongoing problems by asking for help, by being open to others’ ideas, or by joining a support group.
Build in a sense of family togetherness. Take time out to decompress and simply enjoy being with one another. Include your loved one who has the disease in your relaxing activity, be it music, family charades, or a meal.
Maintain traditions. Continue your family’ s meaningful activities and celebrations. These provide continuity and are a reminder of your family’ s history and love. However, also recognize that certain holidays can be highly stressful and anxiety-producing. Give yourself permission to miss a celebration if you feel that’ s best for you or your loved one.
Conclusion
It is essential to acknowledge that everyone is human and that each person is dealing with multiple stressors all at the same time. Express your concerns and fears. Ask each other for support. Reach out to family members who are distant and try to express some of your own feelings and fears. This can open the door to a genuine exchange and a new understanding. Most importantly, stay close to your loved one who has the disease. Remember who they are, what you love about them, and that each moment you share is precious.
37
Talking to Children and Grandchildren
Elaine S. Book, MSW, RSW Diane Breslow, MSW, LCSW
A diagnosis of PSP, MSA, or CBD for an individual is actually a diagnosis for the family. It changes life for everyone in the family, including children of all ages. Supporting the children in the family will require preparation; awareness of age, stage, and personality of the children; and your own acceptance of, or coming to terms with, the condition.
Possible Effects on Children
Just as the symptoms of PSP, MSA, and CBD vary and change over time for each person, so do the reactions, emotions, and needs of each individual child within the family. Their adjustment to hearing about the diagnosis and to the progression of the condition may be related to specific symptoms, the nature of the relationship with the affected individual, the family structure, the family’ s social supports, and other influences such as culture, religion, and outside influences.