Grief and Loss: Huntington’s Disease and things to consider with children.

We have talked about grief and loss being part of the journey for families living with HD, not just the end result when life is lost. It is important to remember that the feelings of change (loss) can also be experienced by children as they encounter changes in their loved one. As parents, we are often concerned about how to best support and meet the needs of our children. Like us, children experience, express and process grief in a variety of ways depending on their age, stage of development, personality, family culture, understanding of death, past experiences, and what else is going on for them at the time. 

Primary school age

During their primary school years, children are beginning to understand the concept that death is permanent, (younger school-aged children may engage in ‘magical’ thinking’). Due to their limited understanding these children may also have an increased fear regarding their own future/risk/death 

Although it is natural to want to protect children from hurt or upset, it is important that we take the time to talk and listen to them about loss and/or changes of someone close due to HD. Always try to answer their questions as honestly and consistently as you can, without glossing over the truth or minimising the impact of what has happened by saying that ‘everything is fine’. You can begin by asking what they already know. Children are more perceptive than we give them credit for and may already have picked up on and formed their own opinion around what has happened.  

Children, like adults, will vary in their responses to loss and grief; however, there are some common factors that may affect them. Children of primary school age may:

experience a difficult transition period, want to see loss as reversible and believe death only happens to other people  

be very curious about death and burial rituals and ask detailed questions • play games pretending to have symptoms  

be angry and focus their anger at certain people  

blame themselves  

experience disturbed sleep, decreased appetite, poor school performance or have physical reactions, e.g. headaches  

worry about who will look after them if a parent or is no longer able to  

take on a parenting role to younger siblings  

‘act out’ feelings rather than talk about them  

be concerned about what their peers think and might be anxious about being seen as ‘different’  

feel isolated, because no-one else they know has had a similar experience  

worry about their own future – will they get the disease and be the same? 

How to help: 

  • Listen and talk with them. Children need time and to feel safe in order to express how they are feeling.  
  • Be prepared to revisit conversations a number of times, as children need time to process information. 
  • Be patient, open, honest and consistent with your responses. 
  • Reassure them that grief is normal, and it is okay to be upset about what has happened. Include them Include children in decision-making when appropriate. 
  • Try to maintain routines and firm, but fair, boundaries as much as possible. Provide opportunities for expression