BEING A CAREPARTNER( continued)
Common feelings some children may experience include:
• Shame or self-consciousness about the way the condition presents( for example, a parent in a wheelchair)
• Anxiety about the stress in the family as a result of the diagnosis and symptoms of the condition
• Sadness, fear, anger, and grief regarding the changes and loss of experiences with the person who has PSP, MSA, or CBD
• Loneliness when one parent spends increasingly more time providing care to the person with the condition
• Worries about their risk of developing the condition, about the families’ finances( especially if income has changed and care costs have increased), and about the impact of the condition on their own future aspirations and decisions
• Feeling overwhelmed by caregiving responsibilities
• Frustrations with their own activities being restricted( such as not wanting to bring friends home, or feeling bad about going out while one parent is home potentially burdened by symptoms and the other parent may be burdened by caregiving responsibility)
Remember that young children cannot always identify their emotions and instead may express them through behaviors( for example, increased clinginess, fears, inattention at school, attention-seeking behaviors).
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Living with a challenging illness in the family can also have positive effects on children. The experience can strengthen family relationships, help improve coping skills, and instill a sense of pride and confidence in one’ s ability to handle life’ s trials. In addition, children who are exposed to chronic illness develop an earlier, and strong, sense of empathy and compassion, which sometimes leads to life-changing educational and career choices. Just as a caregiver and affected spouse may experience personal growth as a result of the illness, children too may grow and develop in unanticipated ways.
Be mindful that as children grow up, there may be difficult times or behaviors that are not related to the disease in the family but are more likely a result of the child’ s or teen’ s social and emotional developmental stage. Children who are managing daily stressors in their own individual lives may have a harder time coping with the illness in the family.
What, when, and how to talk with your children or grandchildren about these diseases
Many parents are understandably concerned about what, when, and how to tell the children about the diagnosis. Whatever the age of the children, think about:
• Sharing the diagnosis and the process of having received the diagnosis
• Providing information about PSP, MSA, or CBD that is appropriate to the child’ s age and developmental stage
• Using language that is easy to understand and that focuses on symptoms and behaviors that the child sees and can relate to
• Communicating your best understanding of disease progression, in response to the child’ s questions and in amounts of information that the child may be able to digest at one time
• Practicing what you are going to say before talking with the children
• Planning for a time to talk that will be free of interruptions, especially for the initial conversation about the diagnosis