When a family member is diagnosed with Parkinson’s, family relationships and how they relate to one another can change.
Younger children adapt more readily. They ask if the illness can cause death and are satisfied when they are told no and can carry on with their childhood games. Their main concern is that their parents will be there; they are open and curious and will ask quite naturally ‘why do you tremble?’
Teenagers can express anger to both parents and towards the disease. Behind this anger is sorrow and a deep felt wish for the parent to be well again. As a result they can try to help too much and become self-conscious, reacting with embarrassment especially with their friends, until they see that their friends accept the change in their parents.
Grown-up sons and daughters who have left home can experience anger and develop a ‘pull yourself together’ attitude, not realising that before their visit home, the ill parent will have rested so as to enjoy the visit with their children, resulting in an unrealistic view of the impact that Parkinson’s has on daily living.
Being a spouse or partner to somebody with Parkinson’s can be physically and emotionally challenging almost from the time of diagnosis. Later on, becoming a carer can be associated with very mixed emotions. Feelings of resentment about the loss of privacy and frustration at not having control over what happens may coexist with love for the person with Parkinson’s and the satisfaction of being able to help them.
Parkinson’s affects all the people around you. The effects of the disease on a child are both practical and emotional. Many people with Parkinson’s prefer to withdraw from society. For me, it was the end of family activities: we no longer went on our regular Sunday picnics and meals out became impossible because of the practical difficulties of eating. The emotional effects were the most difficult. The frequent falls and the difficulty in getting up meant that I often returned from school to find my mother on the floor, where she had been for some hours. Would my teenage rebellion make her worse? Certainly. Arguments increase the tremor and how could I talk about my own problems and difficulties? I wish I had had the opportunity at that time to meet other young people in the same situation; to have others to share experiences with.
Charlotte,42
Luxembourg
