How To Parent A Terminally Ill Child

terminally ill child laughing by a horseParenting a terminally ill child can be one of the most difficult tasks a parent can face. Parents not only have to care for their child, but they also must do so while they are trying to care for themselves. It may not be possible to cure your child’s cancer but that does not mean it is untreatable. Children with a terminal illness can live for many months and even years. This means that they will be receiving treatment to control the symptoms and cancer throughout that process. At this point, parenting does not end and it is important to continue to help the child live a fulfilling and comfortable life. Parents of a terminally ill child don’t have to do this alone and can support their child by having open and honest conversations with the care teams and specialists there to help.

Parenting A Terminally Ill Child

Your child will have many feelings and emotions that come with coping with the bodily changes that are happening after the diagnosis. Again, this is the time to remain active in parenting your child so they will have the most fulfilling life. Encouraging your child to explain emotions, concerns, and fears with words, drawing or other forms of art will help them work through these tough emotions. 

When parenting a terminally ill child, it is also important to make them feel as normal as possible. That means continuing to discipline them, set boundaries, and keep normal routines as you would with any other child. This can be difficult but remember that they want to feel normal and don’t need to be spoiled or coddled.

Talking To Your Child About Their Illness

It can be stressful for kids to go through testing and medical procedures so communicating with them can ease their mind. Asking for help from others who have gone through the same or are professionals can really help ease the strain. Honesty is really the best policy in talking to a terminally ill child. It is important for the child to know the truth about their illness and that they are getting the best care.

For example, avoid saying “This won’t hurt” if the procedure is likely to be painful. Instead, be honest if a procedure may cause some discomfort, pain, pressure, or stinging. Then, reassure your child that it will be temporary and that you’ll be there to offer support. The hospital, tests, and medicine may feel frightening, but they’re part of helping your child feel better.

Supporting Other Children

It’s common for siblings of a chronically ill child to become angry, sullen, resentful, fearful, or withdrawn. They may start to have behavioral issues, pick fights, or fall behind in school. In all cases, parents should pay close attention, so that their other kids don’t feel pushed aside by the demands of their sick brother or sister. Try reserving time for each sibling to talk about their concerns, fears, and anger as well. 

Ways to spend time with other siblings

  • Although the new normal is not the same, there are still ways for siblings to spend time together. Maybe the usual 7pm movie night can’t happen because of a treatment. Being adaptable and open to changing the time is important.
  • Including siblings in treatments as much as possible will give them more time to spend together and create understanding between them. This may help them understand the illness better.

Support For Parents Of Terminally Ill Child

Parents of a terminally ill child also feel extreme stress, loss, and emotional pain during this time. If a parent is not healthy and cannot care for themselves, then they will not be able to care for their child. Tending to your own needs is a crucial part of parenting a terminally ill child. Getting plenty of rest, leaning on close friends, asking for help when needed, and developing relationships with the care teams that are helping with your child’s illness can all aid parents during this difficult process. Parent’s can not do it all, and that’s ok!

How George Mark Children’s House Helps Parents of Terminally Ill Children

At George Mark Children’s House, we provide care for anyone learning how to take care of their child, going through a terminal illness, and more. We collaborate with families to help them develop a care plan that they need.

Transitional Care

Facilitates an easier move between hospital and home, helping parents and caregivers gain more confidence about caring for their child. A transitional stay results in reduced stress, fewer emergency room visits, and fewer and shorter hospital stays. Our medical staff is available 24/7 to help parents and caregivers learn the appropriate safe care of their child, at their own speed, in a warm and supportive home-like setting. Transitional care can also help a child get ready for a medical procedure. Children have been referred to George Mark to achieve the necessary compliance and readiness for medical treatments.

End of Life Care

We provide the resources and support that families need at this time, in a supportive, loving, and peaceful environment. Families and friends can gather together without restriction. We honor and respect each family’s cultural traditions and care choices. In addition to our medical care, we provide counseling, home visits, support groups and participation in events held at George Mark for as long as a family desires, allowing every person to grieve and heal in their own way, and at their own pace.

Respite Care

We offer parents periodic breaks from the non-stop physical and emotional responsibility of home care for a child with challenging medical needs. While at George Mark for a respite stay, children receive quality individualized medical care, delicious home-cooked meals, lots of caring and attention from staff and volunteers, while participating in developmentally appropriate activities such as games and pet therapy. A respite stay is an opportunity for parents to step away from the intense around-the-clock responsibilities of caring for an ill child, to recharge and spend much-needed time on their own or with other siblings.

Learn more about how we help children and families  or refer a friend to our services.