Caring for a seriously ill child can be a tiring and emotional process.
“Meeting your critically ill family member’s needs is a major part of care, but your needs are just as equally important,” according to CHOC Pediatric Critical Care Specialist Dr. Paul Lubinsky.
“If you are well, you have the physical and emotional strength to support your family member and feel good about it. Take time to understand your family member’s illness and treatment options. Having this information will help you make decisions, feel confident about the decisions made and reduce stress. Ask questions, ask to meet with the care team, and keep a journal. Review the journal with a member of the care team whom you trust to make sense of what has happened and how you are responding to it. Progress often is unrecognized without a definitive timeline. Participating in patient care is another way to support your family member and reduce stress. The bedside staff can suggest activities for those who want to be involved.”
Here are some more detailed suggestions and tips for parents, grandparents, relatives and others involved in the care:
- Eat healthy.
- Get enough sleep.
- Exercise, take a walk or stretch your limbs periodically.
- Seek support and accept the help and support of family and friends.
- Keep a positive attitude.
- Use your faith and engage in spiritual activities, such as meditation or prayer.
- Read inspirational material.
- Keep a journal of thoughts and feelings about your child’s progress.
- Ask a family member or close friend to take messages or to be a representative for you.
- Organize a network to help with the activities of daily living. Make sure someone looks after your house and pets, and checks your mail and phone messages when you are not at home.
The illness of a child can also affect others in the family, especially siblings. Here are some things to look for or consider with them, so you can reach out for help and develop strategies to deal with any issues that may arise:
- Children in the family may feel responsible for a sibling’s illness because they had a sibling rivalry or there were tensions between the children in the past. There are a variety of therapists at the hospital available to help.
- The other children may feel ignored or that you are favoring the sibling who is ill by spending so much time in the hospital.
- Children may act out or may regress, such as losing bladder control.
- School performance due to a prolonged disruption in family life.
- Appoint spokespeople to provide accurate updates or start a blog to keep extended family or close friends informed.
Addressing these issues with the help of a specially trained psychologist or child life specialist, is often helpful. Family therapy may also help in dealing with the stresses of a seriously ill child. CHOC has a strong psychology department that can help, Dr. Lubinsky says.