To tell or not to tell… Talking to children and grandchildren about Parkinson’s disease
It has been said that Parkinson’s disease is a family affair because it changes life for everyone both in your immediate family and in your extended family.
Research into the impact of Parkinson’s disease on children is still very new. However, from clinical practice and from literature on the impact of other chronic conditions on families, there is much we have learned.
We know that children, regardless of age, tend to want more information rather than less, they want more information early on about Parkinson’s disease and they want to know what to expect as the disease progresses. And we also know that when the children have a clear understanding of the condition, it can result in less fear, anxiety and distress.
Just as symptoms vary and change over time for each person with Parkinson’s disease, there is a lot of variability in the reactions, emotions, and needs of each individual within the family. Supporting children of all ages including young adult children will require some thought and preparation, awareness of their age, stage and personality as well as a “coming to terms” with how Parkinson’s disease is impacting you.
People often tell me that Parkinson’s disease is not affecting the children in their lives and often worry that giving them too much information could frighten or stress them. However, breaking the silence can actually decrease the anxiety children may have about changes they are already seeing. Children of all ages tend to be very perceptive, sensitive and intuitive…despite being self-absorbed at times. They often know that something is not quite right. Without information about what is actually going on, they could imagine that things may be much worse than the true diagnosis of Parkinson’s disease.
Whatever the age of the children in your life, consider:
sharing the diagnosis and the process of how it was diagnosed
providing information about the disease taking into consideration the age and developmental stage of the children
communicating your best understanding of what might happen
You can even consider practicing what you are going to say with a close friend or family member before talking to children so you can get comfortable with the language and actually saying what you need to say. Remember to talk about what will remain the same…your relationship and time together and what you can continue to do together.
A diagnosis of Parkinson’s disease will present new challenges for your family, ones that you never expected or wanted. It is, however, important to recognize the potential for positive outcomes…the hidden benefits as a result of challenges and adversity and opportunities to grow in unanticipated ways. Being helpful can provide children of all ages with a sense of value in the family, a sense of comfort and security. Living with a chronic condition can strengthen family relationships, lead to improved coping skills for all and provide children with a sense of pride, confidence, and maturity with a well-developed sense of empathy and compassion.
No one welcomes some of the unpleasant changes that Parkinson’s disease brings. In the end, children want to feel secure in knowing that you will be able to manage whatever comes your way, that you will be able to get the help you need and that despite Parkinson’s disease in your family, you will all be ok …. maybe different but ok.
Further reading…
“Etiquette of Illness” by Susan Halpern (chapter specifically for chronic illness and children)
“How to help children through a Parent’s serious illness” by Kathleen McCue
“Raising an Emotionally Healthy Child When a Parent is Sick” by Paula Rauch and Anna Muriel
“Parkinson’s Disease and Parenting: A practical guide to family life with Parkinson’s disease”
By Elaine Book and illustrations by Pascal Girard available upon request elaine.book@vch.ca
Elaine Book MSW, RSW, helped design the very successful Care Partner Lounge space at the WPC and now oversees the plans for the upcoming 6th World Parkinson Congress Care Partner Lounge webinar series and onsite program. She was a member of the WPC 2019 Program Committee and has presented at many of the past World Parkinson Congresses. She is currently the Clinical Social Worker and Centre Leader for the Parkinson's Foundation Center of Excellence, the Pacific Parkinson's Research Centre at the University of British Columbia in Vancouver, Canada.
Ideas and opinions expressed in this post reflect that of the author(s) solely. They do not necessarily reflect the opinions or positions of the World Parkinson Coalition®