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When Your Child is Seriously Ill: Coping with a Parent’s Worst Nightmare

Caring for a seriously ill child can be one of the most draining experiences a parent can face. Parents find themselves juggling their sick child’s needs while trying to maintain a sense of normalcy: they often struggle to meet work and home demands while losing time to endless medical procedures.

Kathleen McDevitt, an Advanced Practice Nurse with the Pediatric Palliative Care Program at Samaritan Hospice, offers the following advice for parents trying to create the best possible quality of life for their chronically ill child and family:

Prepare Yourself

• Get information. “By talking openly with your pediatrician or specialists,” says McDevitt, “you will come away with a more realistic appraisal of your child’s prognosis – often the first step in focusing everyone on the quality of remaining life.”

Build a Support Team

• It is difficult for any one person to provide all the necessary support for the physical, emotional, developmental, social, and spiritual needs of your child and family. Tap into community resources.
• Accept help! If other moms offer to drive siblings to the soccer game, say yes! You’ll need your energy, and people who care about you appreciate concrete ways to show their love and support.
• Build in respite time to eat, rest, take care of yourself, and nurture your relationships. Your child and family need you healthy and refreshed.

Plan Care Based on Your Child’s Needs

• The goal of palliative care is “to add life to the years, not just years to the life.” Communicate what’s important to your family from medical, ethical, cultural and spiritual perspectives.
• Include and respect your child’s wishes. Choose a care plan that allows him/her to remain a child first and patient second. Effective therapies can include music, art, and spiritual support.

Communicate with Your Child

• Help your child understand the illness in language appropriate to his/her developmental level. Answer questions clearly and honestly.
• Prepare your child for any upcoming treatments. Don’t say something “won’t hurt a bit” if it really will, as that will only erode trust.
• Avoid comparing death to “going to sleep” as it may make your children afraid to get proper rest.
• Reassure your children that the illness is not a punishment for anything they’ve done wrong, said, or wished upon each other; that it is not “catching,” and that they do not have to be afraid to spend time together.

Allow Children to Express Emotions

• Allow your children to express their fear, anger, guilt, depression, denial, etc. through both verbal and non-verbal means (e.g. music and art).
• Acknowledge that it is natural for him/her to express emotions that “it’s not fair” or “why me?”
• Try to find special time with siblings who may feel resentful about the attention being lavished on the sick child.

Most importantly, know that you do not have to “go it alone.” Many community resources stand ready to help you.

For more information about the Pediatric Palliative Care Program at Samaritan, developed in collaboration with Children’s Hospital of Philadelphia to serve South Jersey’s most fragile children, call 1-800-229-8183.