When it comes to growing up with a sick parent,
open and honest discussions with the children are necessary. This cannot be more true than for children with Huntington's
disease in their family.
Because HD often leaves one parent incapacitated, prone to violent mood swings, and unable to tend
to the emotional needs of the children, it is important that the family address the stresses this places on them.
Keep in mind that if parents do not discuss the illness openly
with their children, the children are left to answer difficult questions on their own, often imagining the worst
without benefit of more appropriate information. For example, children may wonder if their pets could get HD.
Depending on age, children might ask:
- Who is going to take care of me?
- Who is going to take care of my parent?
- Do I have to give up my life? (e.g. Will I have to take care of my parent?)
- Will I be able to find a partner who can accept this?
- How do I share this information with my peers?
Parents should remind them-selves that their children will struggle with these questions for most
of their lives.
To help children cope with these very real concerns, parents should encourage their kids to
speak freely and ask questions.
Parents do not need to give their children more information than they need, but they should make
their kids feel there is no secrecy or shame in discussing either HD or their feelings.
For example, if a young child asks "can I get it?", a parent can truthfully answer that they don't
know. A younger child cannot process information at the same level as a teen. So, it is important to keep the discussion at
the child's level.
As a child "gets older, the parent will have to discuss the hereditary nature
of the disease and that the child does have a 50% chance of carrying the gene. Honesty here avoids the possibility of
your child suffering secretly, convinced they have a 100% chance getting HD.
While children at different developmental stages will experience different emotions when coping with a sick
parent, the range of emotional reactions may include denial, guilt,grief, anger, shame, and hope. All of these are normal
responses to the stress HD piles on their lives.
Problems occur when a child experiences any of them over a prolonged period and has no outlet
to address their concerns. If any negative behaviors persist, the family should seek professional help.
Denial can be very powerful and pervasive in a family A child in denial may become aloof and distance themselves
from the family.
Do not misinterpret denial, a coping mechanism, with coldness or lack of caring.