The Emotional Challenges of Children Whose Parents Have Parkinson's Disease
It is commonly assumed that Parkinson's disease is a disease of old age, but 5% of persons with PD are under 50 years of age. Many of these younger people with PD have children under the age of 18.
Despite extensive searches, I have not been able to find many systematic studies of the needs, coping strategies or day-to-day concerns of these children. Dr. Anton Schrag’s group at the Royal Free & University College Medical School, University College London, is one exception. Schrag and his colleagues have published a couple of studies on the impact of parental PD on children between ages 12 to 40. They found that the impact was severe. On questionnaires measuring social functioning, children under the age of 18 whose parents had Parkinson's scored similarly to children with epilepsy on questions examining attitude, school behavior, and ‘social support.’ All children, regardless of age, wanted more information about PD and what to expect as the disease progresses.
In my opinion, Schrag’s report just skims the surface of the concerns these children must have. One can imagine what those concerns could be: Will my dad’s (or mom’s) illness get worse? Will Dad continue to suffer? Can I turn to him when I need him? What can I do to help? Who do I turn to when Mom spends all her time caring for Dad? Why am I so angry or needy all the time?
Kids could have great worry and concern for the parent with PD, as well as potential sadness and a feeling of loss. Might there be some risk for depression and anxiety? These kids could conceivably be harboring anger, even rage, as well as guilt over their anger. Do the kids imagine that they are somehow responsible for the parent’s suffering? Do they feel that they can never do enough to help because Dad just keeps getting worse with every passing year? Unfortunately, we just don't have the research to confirm this, but real life anecdotes give some truth to these presumptions.
If you are a person with PD and you have kids, they are very likely of great concern to you. Opening up dialogue with them about how they are feeling and reassuring them that their feelings are natural (under the circumstances) is a great first step. In addition, you may want to ask for help from competent and caring people who can provide your child(ren) with reliable information on Parkinson's and how to cope with a diagnosis in the family. You might also consider inviting some of your older children to accompany you to your local PD support group; there may be other children attending with similar needs. Finally, if you can find no area support group for children of parents with PD, consider starting one yourself. It needn't be anything formal -- just a simple gathering of those facing the same issue, which can help your child see that she's not alone in her concerns.